Gluten allergy symptoms may be similar to the symptoms for celiac disease. You must learn what to eat and what has gluten.
Whether you have a gluten allergy or celiac disease, management is the same: avoid all gluten. Still, I highly recommend you get a test for celiac to rule out this disease. If you have a gluten allergy, you don’t need to worry about tiny amounts of gluten in your diet as long as you feel OK.. On the other hand, if you have celiac disease, you must eliminate all gluten, even if you feel OK.
Gluten allergies are relatively common. Some studies indicate that 1 in 167 apparently healthy children (0.6%) and 1 in 111 adults (0.9%) have a gluten allergy. When people with gastrointestinal complaints were studied, 1 in 40 children (2.5%) and 1 in 30 adults (3.3%) were found to have a gluten allergy. This makes a gluten allergy quite common, especially when people with chronically uncomfortable guts are considered.
The only way to verify a gluten allergy is with a proper test, however you can use following symptoms as a guideline. If you have several of these symptoms, an allergy test for gluten is highly recommended. Insist on one even if you have a stubborn and ill-informed doctor!
Symptoms of a Gluten Allergy
- Upper repository tract problems (sustains, glue ear)
- Fatigue
- Chronic fatigue syndrome
- Mouth ulcers
- Anaemia
- Iron-deficiency anaemia
- Osteoporosis
- Weight loss
- Short stature in children
- Diarrhoea
- Constipation
- Abdominal bloating
- Crohn’s disease
- Diverticulitis
- Depression
- Attention and behavioral problems (in children and adults)
- Autism
- Skin problems
- Keratosis pilaris
- Asthma
- Irritability
- Wheat-Dependent Exercise-Induced Anaphylaxis
Please note several things when considering this list:
- Individual symptoms can vary tremendously. Someone with a gluten allergy will probably not have all of these symptoms, and may have other symptoms not listed here.
- Although some symptoms seem contradictory, it is possible to alternate between one symptom and another, for example between diarrhoea and constipation.
- Just because someone has one, some or all of these symptoms, does not mean to say they definitely have a gluten allergy. Other causes are possible.
Unless you have celiac, you can often decide whether to include gluten in your diet based on how you feel when you eat gluten. If eliminating gluten from your diet makes you feel better, and you find it is worth the effort, then that is enough reason to stop eating wheat, barley and rye.
For parents, it is a matter of observing your children’s behavior as well as asking them how they feel.
Doctors often think they know better. If you feel better when you avoid gluten, follow what your body tells you.
Avoiding gluten can be the key to more energy and clear thinking for many people.
There are tests to see if you have celiac disease or a type-I food sensitivity (classic allergy).
These are not the only root cause for a gluten sensitivity however. Many, if not most people who are effected by gluten will get negative test results.
This is why I strongly recommend an elimination diet, even if laboratory tests come up negative.
Gluten and Fatigue
One of my biggest complaints when I am suffering from my allergies is fatigue. Everything and anything seems like too much effort.
There are many reasons why you might feel fatigue. If you’ve looked into other causes and not come up with anything, I suggest you try cutting out wheat, rye, and barley, in other words gluten, from your diet for eight weeks and see if you get some, most or all of your energy back.
Internal Links
- Gluten-Free Diet Story by Ashley
- Gluten allergy
- Gluten Linked to Seizures and Epilepsy
- Celiac vs. Gluten
- Gluten Allergy Description, Severe Case
- Top 20 Food Allergies with Delayed Reactions
- Self-Testing for Food Allergies
- Allergy Symptoms
External Links
Gluten Allergies – What is Your Experience?
You are welcome to leave your comments below about living with a gluten-free diet, or your road towards discovery that you must eliminate gluten. Maybe you are on that road now? Tell us about it!
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I have always had stomach issues my whole life. I have acid reflux, and over years I have always had stomach pains followed by diahhreoa. When I finally saw a doctor she told me I was lactose which was false. Then a couple of doctors told me I had IBS. My final doctor gave me an endoscopy and saw that I had a stomach infenction, but even after that I still would have these stomach pains, sometimes they would happen often sometimes I would go months without having them. Over the years I have limited myself to foods and am always afraid to get a stomach ache when I eat something. Recently I have been trying to get over that fear. Also recently just last week I had a week full of diahrreoa and stomach pains, then I had a fever and also very gassy I eventually went to the emergency room. They weren’t really much of help they got my fever down but nothing seem to ease the pain. They gave me a sonogram and took my blood and said everything was normal, leaving me with no reason for my pain or my fever! The next day I was in terrible pain. I was curled up in a pall hysterical. I have also been constipated so I believe this was where the pain was from. Some friends suggested that maybe it was a gluten allergy. I do have some of the symptoms that I see I am usually fatigued and I do forget things often and I am either constipated or sometimes have diahrreoa so I definately want to get tested and I am going to try the gluten free diet. Is abdominal pain a symptom, because that is my biggest problem is the pain. I am afraid to eat anything I have lost 6 pounds in a week because I haven’t really ate and anything I do eat seems to bother me. The little things I do eat are pretzels so maybe I am allergic. I hope this works!
While it is possible that you have a gluten allergy, celiac disease is also possible.
I suggest you get tested for celiac as soon as possible. This should be done before you go on a gluten-free diet. If you have been on a gluten free diet for some time before taking the test, discuss this with your doctor.
Have them test your Gal bladder. I was having many of the symptoms you had and they were associated with certain foods. I had unbarable pain that would come and go and not around for months and then have a bad spell. Do you ever have shoulder pain before the stomach pain? If so that could be it. It took them a while to find it in me because i was 19 when I had mine out! I had been having the pains since middle school.
Hi! I too am overweight. I discovered I had gluten, casein, soy, and egg white intolerance through a test w/ Enterolab done w/ a Chiropractor. I’ve done a lot of reading and I found that on celiac.com there are articles listed concerning celiac/gluten intolerance and obesity. It is a common misconception amongst doctors that it only affects the skinny. I have PCOS and I read somewhere that gluten intolerance affects 85% of people with this condition and most people w/ PCOS have weight issues.
I have abdominal migraines, Yes, migraines in my abdominal area. Right around the belly button, like a knife being slowly twisted with no relief. This has been on-going for 14 years now. I have a very sensitive nose for food smells when I don’t feel well *which is often* and I wake up every morning feeling like I have IBS.
I can identify with your fear of being in pain, I have had many comments said behind my back about eating disorders merely because of my reluctance to eat, ESPECIALLY away from home.
I’ve had a baby with an epidural that did not work, and the pain from my migraines are still MUCH worse.
I am now in a Pain Management program, I’ve been using narcotic pain medication to feel good when I leave our apartment.
I have a friend who just recently asked me if I’ve ever been tested for Celiac. The one test I’ve never had! I’ve always tried to eat as “healthy”as possible, (i.e. whole grain, fresh fruit/veg) and I never considered my diet as a reason for my unexplainable ill health.
I’ve been gluten-free for 8 days as of today, I have been feeling better with each passing day to the point that I haven’t been taking my pain medication. I know I will have to talk with my doctors about the test, but for now I am enjoying a feeling of well-being that I haven’t had since I was a young teen.
DON’T GIVE UP!!!!
Patricia, Happy that you are feeling better on a GF diet. You should be checked for celiac disease, but beware that if they do a blood test to check for antibodies, and it comes back negative, it does not mean that you definitely don’t have the disease. There are many reasons for a negative finding. The second test that doctors routinely recommend is a stomach biopsy, where they put a flexible tube down to the intestines, like during an endoscopy and take small samples of the lining of the intestines, to see if there is damage there. This too, though can come back as negative for various reasons. The only test with high accuracy to determine if you have this is a through a gene testing (need a small amount of blood). If after all you don’t happen to have the genes that predispose you to be a celiac, you could still have a gluten sensitivity which is called “non celiac gluten syndrome” and the diagnosis is made based on your report to the doctor, that your symptoms improved on a gluten free diet.
So, it it probably best, not to go back to eating gluten, because even if you are not a celiac, you could still cause a lot of damage to your health if you keep eating gluten. If nothing else, the gluten you ingest regularly is causing an inflammation in your body, and if you’ve read any recent medical reports, you know that this inflamed state is not beneficial for you. Good luck to you!
for two years or more i had a problem with IBS, odor issues, and just plain old stomach pains and irritations including gas, gut rot, acid reflux and heart burn. The past 6 months i’ve spent in an almost depressive state mostly because of the smell that I would emit from my body….it was nasty. I decided to give “Glutin free” a try…it’s been 8 weeks of rice based food diet only. I can tell you this…smell is gone, regular bowel movements, no heart burn, no acid reflux, I feel 110%! The only other thing I did was took an anti-biotic for 7 days to restore the “flora” in my gastro tract, as per the doctor….it’s amazing how they don’t believe you when you tell them what is going on….I even had one specialist ask me if it could be my clothes that smell….I almost smacked him!
That’s great that a gluten free diet has sorted you out!
I hope you meant ‘pro-biotic’ when you said ‘anti-biotic’ because an anti-biotic destroyed the flora in your gut, causes lots of problems. Anyone who has taken anti-biotics should take pro-biotics or at least yogurt with live culture (not all yoghurt does) to restore flora.
No I took an anti-biotic first to remove the bad bacteria
During which I was talking triple dosr of probiotic.
Normally, antibiotics are fairly harmful, although they are sometimes better than whatever infection they are trying to fight. I wonder if the doctor took this into account, or just wanted to feel useful and write a prescription? Anyhow, it sounds like you are recovered now, which is great, and I’m glad you took probiotics too.
My daughter has had stomach issues for many years, lately she is quite fatiqued, IBS symtoms on occasion and her hair is falling out by the handfuls. She is very distressed about this. She has been to several doctors and all testing is normal. Wondering if it could be gluten-intolerance or celiac disease. Thank you!
check for thyriod or hashimoto thyriod disease.
It sounds like classic symptoms of Celiac. Visit their website and read carefully about the testing process to make sure she is tested properly.
After 20yrs, multiple ER visits yearly, illnesses no one could pin down, I was referred by my MD to see a Chiropractor/Nutritionist. He ordered a gastrointestinal function profile by Metametrix and though I did not have Celiac my test revealed a high sensitivity to gluten. By the elimination diet I already knew soy, high fructose corn syrup and most deadly to me, food dyes were culprits but even dropping all of these from my diet, I still had problems but when I stopped the gluten my life became almost normal. The celiac test did not show a gluten sensitivity. Symptoms are not the same for all. With all of my illness and allergy’s, MD’s seemed to think it was all in my head because I was not skinny and I looked healthy, but when I was laying on my bathroom floor so sick, with chills or heading to the ER with my B/P on the rise and rashes I would get there, they would do an ekg say it was all normal and I was having a panic attack. Well in the last two years since diagnosing the gluten intolerance, I have not seen the inside of an ER and have fewer ills. One thing I have done, is kept a medical journal for these 20yrs which was advised by my family physician. It helps me when looking back determine what many of the true culprits where in making me ill.
I’m researching possible culprits for the constant nausea and random bouts of vomit that I keep having. Along with that, I do constantly feel tired. This has been going on since January. My doc did blood tests and also checked out my gallbladder, and found nothing wrong. It is very frustrating to feel like this and not know why.
While your doctors are looking, it would not harm to try an elimination diet and see if you feel better when you cut out certain foods. Gluten is a common problem, but not everyone has the same problem. Milk/dairy is another common problem.
Background:
I’m a 30yr old Indian born male living in London from past 6yrs.
I’m a 69kg fit person and I workout a lot (probably 5-6 times a week) with no medical conditions. (Although I’ve had a sinus operation about 15 years ago, not sure if that is relevant).
History:
Since last 1.5 years (from May/June-2010) I have had hacking cough and skin urticaria (dermatographism).
Following were some symptoms I had in July/Aug-2010:
- Bad taste early morning.
- Choking and wheezing after having dinner.
- Slight pain in the chest.
- Running made everything worse.
- Cold made things worse too.
- Skin dermatographism (urticaria).
I starting visiting GP’s and NHS doctors in Sept-2010; they asked me to use their favourite drug “paracetamol” which didn’t improve anything. After a while they referred me to a chest specialist who made me try different cough syrups, nasal sprays and also did some chest x-rays, lung function tests, CT-scans of chest etc and said everything was normal. (NOTE: NHS docs did not X-rayed or scanned my skull). Eventually NHS docs in London diagnosed the problem as “sarcoidosis” which I think was a total BS, but anyways… (I can sit here and rant about NHS docs but that is pointless)
In Dec-2010 I went to Delhi (Apollo Hospital, one of the best private places). They also did number of tests but they also did a skull x-ray and said I was suffering from allergic-rhinitis and sinusitis.
They give me good medications and everything was honky dory in 2 weeks (apart from skin urticaria), I returned to London in Jan-2011 and the symptoms started to come back slowly and in a month I was back to square one!
Early this year, I gave up and just accepted that I’ll have to live with the conditions; well time and again I try to Google it and get to the bottom of it; but it seems like I’m swimming in Atlantic (no visible bottom and I keep drowning rather than identifying the cause).
Current State:
Recently, I tried to understand from Mr Google and “chronic coughs due to post nasal drip” is the one that makes the most logical sense of underlying cause of my painful 1.5 years. Over the last 3 months I’ve tried cutting out various food items, stopping the protein shakes, bought a couple of air purifiers, moved to a new house!!!!!, started taking different antihistamines and doing nasal irrigation (doing Neti using Salt and baking soda powder), and started applying vicks vaporub on my chest before sleeping every night (been doing that for almost 2 months).
Some of these things help like Neti and acrivastine antihistamine but not for long; after 2-3hrs I feel the nasal drip at the back of my throat! Vaporub helps me breathe well when I’m sleeping without which I’ll get up in the middle of the night and cough like a mad dog. The True-HEPA air-purifier from Honeywell (£150) was a waste of money.
Something tells me this forum might help me (well I’ll find out soon enough). I still have the following symptoms:
- Feeling of something dripping at the back of my throat ALL THE TIME.
- If I snort it and spit it out, it is yellowish green in colour.
- Early morning my chest feels clogged with this drip.
- Early morning chest pains.
- I cant go for my 5km runs, because it makes nasal dripping worse and makes me cough a lot.
But is this due to allergies? Is this due to something I eat? Does this problem have a name? Or is simply hay-fever and I just need to put up with it?
Is there something you can advice?
MSM
To MSM: let me start my reply by telling you, that a food allergy can definitely be the cause of your symptoms! This may sound really unlikely, but food allergy can be the cause of your “post-nasal drip”. One of the first symptoms I get when I eat an offending food, such as gluten, my nose starts to drip into my throat, and if I happen to be lying down, I feel like I am going to drown. It is very unpleasant. The tightness you feel in your chest could also be a symptom, because an allergic reaction will dilate your blood vessels and your heart has to work harder. Your body produces histamine to fight the “invaders”. The problem is, that this dripping down your throat can easily turn into a sinus infection down the road, and you will have to be put on antibiotics. This journey is very difficult because you can develop a never ending quest of taking antibiotics, feeling a bit better for a few weeks and then getting a new sinus infection. This is what happened to me, until I figured out that all the bread products and wheat pasta might be making me sick. I would start my day feeling relatively OK, but by late afternoon I would be deadly sick. I would wake up with a horrid headache, pressure in my scull, the bones of my face, a stiff neck (the lymph nodes under my jaw and the back of my head swollen). After I got up these symptoms would improve since I was now upright and not lying down. As the day progressed, my stomach would start to act up, and by the evening, whatever food I ate, would sit in my stomach undigested. My heart would be racing, my blood pressure would go up and down. My heart rate would go from a resting 70-80 to 200-220 while I was sitting down! The way I figured out the problem, is by using logic. I said to myself, that whatever was the root of my misery, it was something that I did everyday and it had to be food, because my stomach was OK after a 12 hour or so of a break (overnight). The obvious culprit was wheat (and also rye and barley) because this was the only ingredient that was potentially highly allergenic and something I ate every day, whereas other things I ate varied from day to day. Plus, whenever I tried a diet, such as the “candida diet”, where you have to cut out all sweets and bread, I had lots of energy, and felt better for it. So I cut out all gluten, which wasn’t easy. Until you make a conscientious effort to do that, you don’t realize how many products are made with gluten. For example soy sauce, the constant ingredient in Chinese food is made with wheat. If you want to try this elimination diet though, you have to do lots of reading, gathering lots of facts, you have to also learn to read the label and know the ingredients of every piece of food you eat. My situation was desperate and I was very sick, so I was highly motivated to get better. You would need at least a month on this diet, although you could find vast improvement in a fortnight as I did. My energy level is way up, my heart feels fine, and I haven’t had a sinus infection in over 2 years. And in the future you start to feel the old symptoms propping up sometimes, that might mean that you ingested some ingredient that contained gluten, or that you are developing a new allergy (that can happen unfortunately) to milk and milk products, or nuts, or tomatoes etc. I for example only drink rice milk, soy milk, hemp milk or coconut milk now. Can’t drink almond milk because it gives me blisters on my tongue, inside my mouth and on my lips.
Good luck to you, hope this information helps. If you have questions I’d be happy to answer.
Thanks Agnes,
Your reply has been exactly what I have been thinking.
I have stopped taking gluten related products from last 3 days but like you said, its a long and horrible journey when cutting out gluten from your system.
Well, I guess only time will tell me if gluten is the cluprit for my problems.
Thanks once again
MSM
Hi MSM,
Give the GF diet a couple of months, it can take weeks before you notice any difference at all, but then the difference may be huge.
Hi Allergy Guy & Agnes,
Thanks to both of you for your responses. Really appriciate this.
There’s one quick question I have if you have time and care to answer:
As I’ve moved on to GF diet, I was also thinking of getting a food intolerance test done (some people call it allergy test, although I dont quite understand the difference between allergy and intolerance).
My question is, do you think being on GF diet and getting an alergy test at the same time may be counter-productive and wont bring out true results? i.e. Do I need to be on my regular diet (and of course stop antihistamines) before taking such a test?
MSM
Such tests may not be accurate for gluten, you’ll have to ask your allergist. However they should be as accurate as they can be (not very I’m afraid) for everything else.
Use such tests as a guide but don’t depend on them. They can produce false negatives and false positives, for example it may show that you are allergic to something you are not, or miss some food that you should cut out.
The best test is to do an elimination diet and see how you feel.
Good luck with it!
A year ago I heard a speech by a man with celiac disease. Some of what he described got me thinking. I recalled my long history of sensitivity to foods and air-borne substances. I wondered if I should get tested. Then one day I decided to eliminate gluten from my diet.
I cannot tell you the difference it has made in my life. At 68 years I feel like a new man! This is no exaggeration and I have no incentive for saying this except that it feels good to tell my story to anyone who might listen.
When I was a kid I was called lazy. All my life I’ve had difficulty concentrating. I did well on IQ tests but was criticized for doing poorly in school. I had to repeat two high school classes because I slept through them. I now realize that I was “lazy”. I was chronically lethargic. I had little energy. I didn’t go out for sports because I couldn’t keep up with the other guys – low energy and little ability to concentrate. I’m a musician, but did not stick with any instrument long enough to maximize the use of my talents.
Now that I am gluten free I feel better than I have in years – in some ways better than ever! I have energy, I can concentrate better, my thinking is more clear and my post-nasal drip is gone, but bouts with colds and flu are less frequent. As long as I stay away from gluten I am now more tolerant of other foods and am less sensitive to air-borne substances. I wake up every day with gratitude for my new life, gratitude to the man who gave the speech on celiac disease and thank you for informing people aware of this silent enemy!
So glad you have discovered the secret to your health, Tom. I must say, I like to hear when someone tells me a story that proves my theory that wheat and gluten are evil! Too bad your long life so far was so marred by low energy due to gluten. At least now, at 68, you can feel younger than you did years ago.
I have the following symptoms (every day/all day):
* itching without rash (but sometimes flushing of the skin and I feel warm)
* acidic/metallic taste
* acid stomach (gets worse with stress and some foods etc., but always there and no acid reducers help)
* appearance of fuzzy/fungus-like globs/coating and thread-like strings in my stool
* bowel pain (under diagphram and in sigmoid of large intestine)especially if a BM is missed, delayed or incomplete
Symptoms that come and go:
* extreme fatigue and flu-like symptoms when I have missed a BM or it is incomplete (so whenever there is feces in the sigmoid, feels like a brick is in there) Happens 2-4 days per week and often need to be bed ridden due to fatigue.
* brain fog
* depression
* anxiety and lack of concentration
* thirst and burning mouth and lips
* frequent urination
I have been tested by an immunologist/allergist/rheumatologist; GI doctor and several upper, lower GI’s and colonoscopies; neurologist who tested me for MS and no findings!
Recently tested for Celiac and the blood test was negative.
Waiting for lyme, wester blot results.
All blood work (sugar, hormones, thyroid, mastocytosis) all fine or negative.
What the heck is wrong with me!!!
www.integratedobgyn.com/intmd/int_yeast.htm
Much of it is indeed candida yeast infection, which I am treating and seeing slow improvment. I was also diagnosed with Lyme Disease, which can lead to gluten/wheat intolerence. I was on Nystatin for the yeast,but now am using Syntol and caprylic acid and doxycyline for the Lyme’s.
Hello, I first commented on this site about 3 months ago, after finding out my children ages 9 months – 11 years. we have battled with excema, asthma, always sick, attention problems, mood swings, fits, stomach problems, anxiety, depression etc over the years. So we originally started out going Corn and Yeast free along with little Dairy, only hormone free organic products. But it seemed that almost all the foods have some reaction and since we have eliminated most.
When they do have something bad there behavior suffers bad! My question is could it be more of one or two kind of allergies rather than so many???? Here is our list that we have found. I am now leaning toward the Feingold Diet or ADHD Diet,
Here are the bad reactions, Chocolate, Gluten, Corn (not sure if its all or just like High Fruc. surup), Red apples, green grapes, raisens, wheat (i think?) red dye, blue dye, additives, pesticides, even uncured bacon, carrots, yeast, dairy, wondering about Celiac too?
They keep getting rashes too but not sure if its from detoxing or food? Im sure I forgot something but seems like everything were allergic too. Ive changed things even down to salt, detergent, rice milk, hemp milk, So anyone with info or have gone through this please let me know, I have spent close to 3 hours at least a day reading and researching allergies and how to cook everything from scratch. Please help anything? Thanks! Also the Feingold diet, why is it so expensive to find the info.
It is possible that some allergens are worse than others, that the minor ones push them over the edge, and the major ones are primarily at fault. Or it could be that all the allergens are just about as bad. The only way to find out is experimentation.
Keep in mind that some allergens, i.e. foods they are allergic to, can stay in the body for weeks. If you switch foods in and out too quickly, you won’t really know what is problematic and what is not.
When you cut out a food, cut it out for at least two months. That gives time for it to be flushed from the body, and also to see the change in behavioral patterns. Many things affect a child’s behavior, they may have bad days for any number of reasons. You need to see if they have more good days, and if the bad days are less bad.
If possible, eliminate all the foods you think are problematic, then reintroduce them one by one, every two weeks or so.
Ive had somach problems for years and they are getting worse. could this condition get worse over the years?
Considering that you are getting worse, I’d say so unfortunately. I’d recommend for you to see a gastrologist if you haven’t started to do so already.
I have suffered from what i thought was IBS for years. Excruciating .pain and extremely offensive diarrhea. It was really getting the better of me. I finally decided to go on a gluten free diet. Within two days I was a different person. The only trouble is now if I get the smallest amount of gluten the symptoms return with a vengeance. I just have to be vigilant. Life certainly has improved. Has anyone else had this experience?
I never had diarrhea, but I had plenty of abdominal pain, bloating, GERD like symptoms, always tired and off focus, depressed, moody, etc. I went gluten free and by the end of the day was my complete old self again. But currently as we speak, if I do have the smallest amount of gluten, my symptoms go haywire. You are not alone.
Hi, for the last 4 months I have had extreme fatigue and pretty much constant diarrehea, and I have to wee many times a day. Even if I have a sip of water I have to wee. I am now suffering from anxiety as I’m scared to go out in case I have to go to the bathroom and can’t find one. If I don’t wee straight away I get diarrhea. The doctor has performed many tests including a colonoscopy which came back normal. He has found that I pretty much have no vitamin d or iron levels (I have had high iron levels all my life) and that I have high hormone levels in my thiroid but he said not enough to worry about. I recently saw a different doctor for a second opinion as I just want my life back and he said he’s sure I’m gluten free. My first doctor tested me for this but it was negative. Second doctor said that I could still have it. I have been gluten free for 3 days and I just want to know if anyone with it thinks I have it? I don’t get the stomach pains that everyone mentions. I do have really low blood pressure so do feel dizzy a lot. I am desperate for answers and a cure – please help me!!! Thank you!!! I am doing a gluten free diet for 30 days under my doctors advice. Thank you for any advice!
Hi Molly,
I suggest you stick to a strict gluten-free diet for at least two months, and see if you get better. If you do get better within that two months, you will probably want to remain gluten free permanently. Tests are not 100% accurate. Celiac does not always come with stomach problems. Stick with it and see how you make out. Good luck!
I am 13, and i have had stomache pains since 5th grade. i have been tested for many different things. everything turns out positive. my stomache hurts after i eat alot. and i feel bubbles in my stomache. it stops me from doing what i like. i had to cancel a b day party in 6th grade because my stomache hurt so bad.. any suggestions?
Canceling a party is no fun!
Since the tests you have had are not helpful, I suggest you try eliminating different foods from your diet and see if that helps.
The most common problems seem to be milk/dairy and gluten, but they are not the only foods that might cause people problems. We are each unique and almost any food might be a problem for someone out there.
Please read Elimination Diet for another way to find the problem.
Good luck! Let us know how it goes.
Symptoms:
odor emitting from body – smells like fecal matter
stomach pains
Constipation
indigestion
anxiety and social retraction
depression
weight flux weekly
Can someone make a suggestion
I was told years ago I have IBS – I don’t get diahrea, rather I get completely backed up espcially under stress. For two years now i have had issues with smell. I smell bad and get told i smell bad…the smell gets worse with stress sometimes. I shower daily, sometimes twice…it’s in my breath, and from my skin and others
Hi Joe,
That’s really tough, you must feel really bad when people tell you about the smell.
I hope you’ve followed up with a doctor lately, and maybe got a second opinion. Your comment is under the gluten allergy symptoms thread, so I assume you suspect gluten. It is worth cutting it out for a couple of months, along with dairy and sugar.
It would be a great idea for you to visit a nutritionist, they may be able to help you out as well.
With luck, someone else will see your comment and respond based on personal experience with those symptoms. Good luck! Do come back and comment as you discover more. And do make sure you see a doctor.
I think some questions I would have for you are: Are your symptoms get better overnight? Do you feel better in the morning than the night before? Has it ever happened that you couldn’t eat for a while, during a bad cold? Did the smell get less or went away? Was there ever a time when you noticed that you were feeling better?
The reason to ask these questions and to find an answer, is to get a clue for what makes the symptoms worse. F.ex.: if you feel better in the morning after your stomach had the chance to recover, it could very well be that the cause of your discomfort stems from something you eat habitually, and everyday. Gluten is one of the worst allergens, and it does cause many divergent symptoms, including neurological symptoms. Whether you have celiac disease, gluten sensitivity or gluten allergy, you can find out about is from a blood test. Your body produces certain antibodies which show up in the blood. It can be measured. As far as celiac disease is concerned the only certainty would come from genetic testing, because you can have a false negative test with a blood test only. If your symptoms are as severe as you described, these simple test could give you an answer.
But, before I finish my comments I have a few more questions: have you ever been on a prolonged antibiotic regimen? Have you had repeated infections?
The reason I ask, is that you could have developed a systemic candida infection, when the balance of beneficial bacteria was upset by repeated antibiotic treatment. The candida infection in the gut changes the structure of the gut lining, allowing pieces of undigested protein to get into the blood circulation, which sets up your immune system to react to these invaders and start an immune reaction to foreign bodies such as gluten. So, every time ingest gluten in a piece of bread, pasta, beer, cookies, soy sauce, etc. your whole body goes crazy.
If you did take some antibiotic for a while, your best bet is to see a doctor specializing in candida yeast infection, stop eating sweets and sugar, and start eating some plain, unflavored yogurt. Until you find a specialist and get an appointment, do the things I suggest. They will certainly do no harm. This is just a slight diet modification. By denying the candida its main food source, which is sugar, and by eating yogurt which replaces beneficial bacteria, you will take the first step in getting yourself better.
Also, please let me know the answer to my questions, I am very intrigued.
i) I smell bad most of the time (75%) of the day, every day
ii) It used to go away for a day or two, but doesn’t anymore
iii) The smell is in my breath, and coming from my anus
iv) I am always constipated with diarrhea occasionally (1 time per week)
v) I know it’s not a psychological thing as I am told by others about the smell
vi) I have lost approx 40lbs since September 2009 (currenly 175lbs)
vii) I have a weight flux of +/- 8 lbs over the course of a week
viii) I have trouble sleeping/falling asleep
ix) Every time I eat my stomach hurts, so I have slowly retracted from eating many foods and sometimes meals, which I know isn’t good. I was so uncomfortable yesterday after eating the foods that mom ordered. I should have known better not to eat it.
x) I’ve tried enema’s to clean out my bottom end, and stool softeners and prescription meds to clean out the top end…it’s not working. Even when I did the “fibre” thing like daily cereal of 56% daily recommended fibre I wouldn’t get bowel movement. It’s like my bowel has stopped working efficiently.
Eating habits :
i) Eat healthy most of the time
ii) Rarely eat greasy foods and if we eat out like Burger King, I either get a kids meal or share with jewel
iii) Eat oatmeal for breakfast all the time (1 tbl spoon brown sugar, cinnamon)
iv) Usually tuna, salmon, or some type of fish like sardines for lunch two-three times per week or veggies, sometimes fries with meatless chilli on them the other days (cooked in Canola oil)
v) Dinner lately has been at the restaurant but hardly hot dogs…usually a wrap, or pita (I usually eat two hot dogs per week (our dogs are not full of junk)
vi) Only drink 1 cup of coffee per day with splenda.
vii) Drink 4-6 bottles of water per day
viii) Started a vitamin regime of 500mg C , Omega 3-6-9, and B complex 100mg
Physical issues:
i) Trouble sleeping
ii) Stomach always feels bloated and sore
iii) Sometimes (usually once every two weeks) I have a bowel movement that is almost green in color
iv) Once in awhile, I’ve had blood (bright red) in my stool and on the toilet paper ( I can’t feel a hemroid)
v) Whenever I eat, I don’t feel too well and that curbs me from eating
vi) I usually get skin tissue folds in my mouth on both cheeks (like dead skin wanting to pull away)
vii) Get constant constipation and might have a decent bowel movement once every three days and minor movements that are rock hard once per day (might explain the weight flux)
viii) Weakness in my joints often
ix) Constant back pain especially lower back/spine
x) I used to have gas all the time in the form of flatulence but lately I rarely have gas.
xi) When I feel I am ready to have a bowel movement, it seems I don’t have the muscle contraction to get it out? Not sure I am explaining the correctly…it’s there, but not moving!
See my previous post, but I suspect candida yeast infection of the GI tract.
Also, I have tried EVERYTHING and every kind of fiber to manage constipation/sluggish bowels and am finding magnesium citrate powder from a health food store to be the best most tolerable remedy (1-2 TBS. in warm water before bed).
[This comment has been changed into an article, see Gluten-Free Diet, On-Again, Off-Again]
Addie tells the story of cutting out gluten, feeling better, eating it again and then feeling worse than before. Read the full article and add your own comments at the link above.
Thanks for your long comment, Addie. You so well described your experience that I gave your comment the honor of being it’s own article. If you want to follow the thread of responses, leave a quick comment under the article at the link above.
Best of luck staying gluten-free!
Thank you! I appreciate learning that it is indeed a shared experience. I look forward to hopefully hearing how others have overcome obstacles to living gluten-free.
My problems all started up in July of this year (2011). I started having a lot of GERD like symptoms, and I’d have an attack once a week starting out. I went to the doctor and she diagnosed me with acid reflux. I went on acid reflux medication, the first medicine only worked for a week, and the other didn’t work whatsoever, so I ended up stopping the medication. My symptoms slowly increased to twice a week, three, four, and so on to the point it affected me just about every minute of my life when I was awake. In the meantime I got a sonogram and a hide a scan done on my gallbladder, was transferred to a gastroentologist, and had an upper and lower GI performed. My sonogram and hide a scan results were perfectly normal, along with my upper GI results. The only thing my doctor said on my upper GI was that I was taking in tons of air that was going straight to my stomach. It wasn’t until I got my lower GI that something was truely found out. They found an ulcer half the size of a pencil eraser in my colon, in which they biopsied it along with several other spots. The results came back which found that I was making up a gas in my colon which is only made up if you have an allergy. My dad did more research on the computer and came to find out most allergies in the colon are from food. So I decided to start eliminating food, and my parents and I decided to eliminate gluten from my diet. By the end of the first day, I started feeling 100% better. I ate some sliced cheese the next morning, and had a mild reaction in which I found later that I’m not supposed to eat. So apparently I have a gluten allergy! I’m thrilled that I have found relief to my problems, and I’m so thankful I had tons of support and that prayers were answered.
P.S.- I’ve been tested for Celiac’s already and it came back negative.
I am 21 years old and have been having terrible stomach pain for as long as I can remember. I did notice it became much worse after I started high school and had less of a regular diet. I went through many test through high school ruling out everything therefore being diagnosed with IBS. However they did not test me for a gluten allergy. This idea has only recently came about because my roommates is a ciliac and was explaining to me that she had chronic yeast infections and always had a white discharge until she became gluten free. I too have this issue. I also have bad insomnia, an attention disorder, chronic fatigue and bad acne that I’ve tried everything to get get rid of, yes including Proavtive! I was just wondering if this all could be related to a gluten allergy or if you have any other ideas I’d love to hear them. Thanks
It sounds like it could be either a yeast problem, a gluten problem, or both.
By all means, try going on a gluten-free diet. It sounds like you can get a lot of help and support from your room mate.
Also look at reducing sugar and refined carbohydrate intake which would help with yeast issues. There are yeast cleanses you can take to deal with this issue also.
I am not sure that i have celiac disease or gluten allergy, But i have mucus in my throat it is always filled with mucus and i stayed clogged up. i have has all kind of tests. all of the tests comes back good.
Why do you think it’s gluten? Have you tried eliminating gluten and found the mucus goes away?
Milk is mucus-forming. Have you tried cutting out milk?
Hi, I just read Joe’s post, and can so relate. I also suffer from fecal smells. One is a “dirty diaper” type smell, the other an “unwashed butt” smell. I have been lucky enough, through trial and error to figure out the latter. I had given up corn and wheat a couple of months ago, and it went away. It has come back only twice. The first time from drinking buttermilk. After checking the label, it is made with cornstarch. The second, was yesterday, after eating something I had baked using baking power. It seems it is made with cornstarch. I guess I will have to keep not eating processed foods or eating out, as just about everything has corn syrup or cornstarch in it. I hope this can help someone else!
I have been having stomach issues since august, which seemed to come on suddenly, waiting to see a gastro doctor.. which could be a year or more.. but my symptoms are, acid reflux and i can literally feel the acid in my stomach , dry mouth and sore throat(no infection) almost constant gas, bloating severe cramping at times.. sudden frequent urges to have a bowel movement which is either diarrea or just small pieces..foul smelling going from 8-20 times a day, more frequent headaches, heavy menstrual cycle or missed ones , joint pain, some numbness at times in left side of face and once in left hip. when i feel the symptoms the most i feel exhausted and muscles burn. cold chills no fever… the stomache issues are the worse with the rumbling and burning gas etc.. of course i think stress of worrying about going in public because of frequent bathroom trips makes acid worse… there is the rare day that if my stomache feels good i feel good… doctor said lactose intolerance which turned out wrong.. any help would be good i am fed up with this… some days i dont eat just so it doesnt hurt. another symptom is feeling full even with eating a little bit of food,, and i can stand to lose a few pounds so havent lost weight.. thank you..
There are several things that can cause your symptoms. Not being a doctor, I am neither able nor qualified to give you medical advice.
You can try cutting out gluten. Certainly what you are describing is consistent with celiac disease. If eliminating gluten clears up the problem, then there is a high chance that you are celiac, but this would not be a definite diagnosis.
If you cut out gluten and then get tested for celiac, the tests may not be valid. So you may have to assume you have celiac and act accordingly (never eat any amount of gluten). On the other hand, if you want to be sure, you may have to reintroduce gluten into your diet before getting tested.
If I were in your position, I would gut out all gluten completely from my diet for at least two months (if you ‘cheat’ or slip up, the clock starts over from zero) before deciding if it might be the cause or not. If my symptoms cleared up, I would avoid all gluten in any amount for the rest of my life.
I can’t tell you that this is the right course of action for you.
Thank you for your input…I am hoping to find something out soon,, like everyone else it is frustrating and exhausting to keep going like this.. and for sure if it turns out to be gluten causing the problem it will be cut out.. thank you..
I started to get stomach aches last June, when I was 5 months pregnant. Drs blamed gas and the pregnancy. Almost two months after having my baby, they began to get more frequent, every few weeks, then eclvery other week, now for the last month and a half it’s been once a week. It always happens about an hour after I am awake, and comes on strong. I can barely move and am doubled over in pain. The painis sobad it makes me nauseas and sometimes I vomit. Otherwise it feels like I have to goto the bathroom but it doesnt feel better after . the only thing I can do is sleep it off for about 4-5 hours then I feel alot better. I have no idea what goin on, waiting for a GI dr to call me back. Does anyone have any suggestions? I am healthy eat well and exercise and feel great in between these episodes.
I have had stomach issues my entire 25 years of life. Constipation being the main culprit. When I was about 19 I started getting really intense episodes of bloating. It literally feels as if one huge bubble is inside of my stomach. The pain has been so bad I’ve contiplated just stabbing myself to relieve the pressure in there. When these episodes come on, I can burp for hours. When I stand up they project even further and they literally feel as if they are coming up through my lower abdomin. While I can burp forever to release gas it does nothing to help the pain. I am wondering if gluten could possibly have something to do with this? I’m 25, I excersise a minimum of 4 days a week, I do not drink soda or eat fast food. I rarely even eat beef anymore. I mostly stick to chicken and turkey. The only alcohol I consume is red wine. I also don’t eat anything “white”, I stick to whole grain pasta, rice and bread. These stomach episodes are as random as they get. I have been unsuccesfully trying to pin point my problem for the past 6 years. I’ve been to a gastoenterologist who told me simply to drink more water…..not helping. I’ve had a colonoscopy with nothing found abnormal. If you have any words of advice, or if you feel this could be a case of a gluten allergy please let me know. Desperate for help at this point.
Christy
Hi Christy,
One couldn’t rule out gluten allergy. They only way to know for sure is to cut out gluten (unless one of your doctors has a better idea – apparently they don’t!)
I’d give it at least two months minimum, and if you realize you’ve eaten gluten for some reason, you have to start over.
I also suggest you keep a log of all food that you eat, and note how you feel. Food allergies can be delayed by up to a week, so don’t assume that what you ate an hour ago or yesterday is the cause, although it may be.
Good luck. Let us know how you get on!
Similar symptoms with one other. For the past two years an awful smell that wouldn’t go away. Doctors didn’t do much so I self diagnosed. Went gluten free for 8 weeks. For the first time in about w5 years, no gas, stomach pain, weakness, or mood swings. Then I introduced bread again and within two days every symptom was back. So now it’s all about changing my diet and making sure I don’t eat gluten.
Hi I’m 13, and I just found out I have the allergy. My whole life till now, Ive had problems concentrating. My parents knew I didn’t have ADD or anything and just thought I was a slower mature-er.
In the past year, a lot of these symptoms are happening to me. I have been always tired, but then didn’t sleep much ( I don’t know if this is part of it) I had a lot of mood swings(Maybe puberty) Easily mad, constipation sometimes, My stomach always popping out like I’m fat and then after a while it goes back looking skinny again, I get depressed for a day or a day in a half at a time (like once every 2 months), and more I cannot remember.
My mother has the allergy, My grandfather, My brother, and my nephew is having signs of it.
Sadly, this is a upsetting thing. All my life I have loved the taste of pasta and bread, loving how it tasted so good. It’s been my favorite food for a long time.
I have had my mothers gluten stuff, but it’s not the same. It tastes like rice, not the soft stuff.
Right now, I wish I knew of something that I could do just to get rid of the allergy- all my favorite foods in the world are now foods I cannot eat…
Cutting out gluten and forgoing your favourite foods does suck.
On the other hand, the symptoms are worse than missing out on your favorite foods. Actually, you’re lucky to discover this at 13. I discovered my gluten allergy at 22. I went through a lot of tough years, had trouble studying, had trouble socializing and was generally unhappy.
You can find other favorite foods. That will take a while, you have to get used to new food and that’s a drag.
For example, get your mom to find rice pasta – its really good and you can hardly tell the difference from wheat pasta. And there are gluten free breads that really are pretty good. It does take some searching though.
Good luck. If you have any specific questions, ask them here and someone is bound to have an answer for you.
There are many foods for sure…the only problem is most store bought stuff is expensive. like a loaf of frozen raisen bread at $5.99! Ouch….
I’ve gotten used to Quaker rice cakes in place of bread…there are multi-flavor and the company assured me they are gluten free…
In the Asian foods isle, i have found “rice stick” which looks like a pasta noodle and is very light and good tasting and is much cheaper than “gluten free” pasta. I stay away from the “bulk food” stores becuase of cross contamination.
There are lots of foods now in the regular food isles that are labling gluten free…you just have to look…Healthy Lifestyles clam chowder from Campbells for example.
As Allergy Guy says, there is so much out there now. My frustration lies with restaurants…most do not have a Gluten Free menu.
Even before i self diagnosed, our restaurant had a small menu of gluten free foods “without raising the price”. Now we have so much that people can order, like fresh cut fries with gluten free gravy, our gourment foot long hot dogs are gluten free, we have gluten free ice cream….
You’re right, Jason, the prepared stuff is expensive. That forces you to avoid over-processed, high-carbohydrate food, which is good for your health but yes, you have to reduce the amount of such food due to expense. Not such a bad thing when you get used to it, in my opinion.
I didn’t know that Cambells produced anything gluten-free, how about that! It is work rescanning brands you’d given up on long ago because they may change!
Restaurants are a problem. I find that the ones who can’t offer gluten-free or don’t know what’s in the food are also inferior restaurants, generally speaking. Once again, one must often resort to the more expensive restaurants. At least the restaurants that can serve GF are usually more switched on and have better food.
Hi everyone, I posted on this site a few months ago now and just wanted to give an update. After going gluten free my problems seemed to go away, which as you can all imagine was a major relief. I was so worried about what I ate/drank that the only thing I would eat was Kettle salt & vinegar chips/crisps and cans of coke. After my issues cleared up, and I became less anxious I worked out the major cause of my problem was stress. Looking back I had two major things happen in my life within a couple of days and instead of dealing with it, my body just shut down pretty much. I changed jobs in my company and my very sick father began to recover, I had also started to talk about all of the above with friends etc and it made a huge difference. I am almost completely back to “normal” I still have a few bouts with anxiety and for the most part I’m gluten free but when I do have it I don’t have a reaction anymore. I just wanted to post so that the people who are struggling with this alone may be tempted to speak with someone about what’s going on in their lives, as it helped me a lot. I also wanted to say that this site is an absolute godsend, not that I wish anyone to be sick but knowing I wasn’t the only one going through this made it a bit easier to get through. Allergy
Guy – you are amazing, your quick responses, your encouragement and support that you give to all these people desperate for help and a shoulder to vent on is nothing short of heroic. Your advice made a difference to my life. Please know that you are doing an amazing thing here. I will
continue to read the posts that come through as it reminds me of how far I’ve come. I hope each and everyone of you is feeling better, and if not, stick to your gluten free diet, you will feel better soon and you are not alone. Thank you so much X
Hi Molly,
Thanks for your update. It sounds like you’ve both improved your health and grown as a person, so there’s the silver lining!
I appreciate your encouragement of my work, it really is wonderful to be able to help so many people!
Why would a twice diagnosed coeliac have, Allergic reactions, high blood pressure 210/108, nose bleeds, mood swings, trunkal rash (not DH) require up to 6 Piriton daily during episodes 12 to 17 days when on a gluten free diet ie 20ppm of gluten or a wheat derivative ?
Not IgE or skin prick test positive to wheat.
There could be several reasons. Maybe you are still getting gluten in our diet. One can have allergies without being a celiac. There may other medial issues you have to look into. Are you seeing a doctor? There is no way you can get reliable and definitive answers from the internet, although you can get plenty of ideas to try and avenues to explore. And many doctors can bark up the wrong tree. You should still be seeing one though, and also searching for your own solutions.
I hope you find the answer soon. Do please share it with us when you find out.
According to medical science I am a twice diagnosed coeliac who has been investigated by a professor. Results : IgA = neg, IgG =neg, ttg =0.9, AGA =42. HLA-DQ2=positive, Professors prognosis = Excellent if I stick to the gluten free diet, this has been making me ill.
When I become ill like now (covered in rash/spots not DH etc) I find what is different in my diet and research the ingredients the latest being cranberry juice, which contains sugars…when researched it produced different results ie aspartame for one.
It sounds like you should follow up on the allergy theory. The tests are not very accurate, they should be used as a guide, but you could get false positives or false negatives. The only thing you can really go on is how you feel when you eat/don’t eat certain foods.
Prior to this second diagnosis I was using chemicals, many litres because of work, one chemical I researched indicated damage to the GI tract, another being a pesticide which when questioned why it “may produce an allergic reaction” the response was that it contained a chemical that became banned the following year.
I have since using these chemicals had two cancer scares lungs & hips both negative.
Contrary to belief I went completely wheat free 8 weeks prior to endoscopy biopsy and had an active CD result but an endoscopy in 1992 had shown nothing.
I am finding it difficult to find a medical professional who will carry out a gluten skin prick test for me.
Well, if you had a positive CD result, then there’s no need for a gluten skin prick test, in any case such a test is not very accurate. You already know to stay off the gluten!
Stay vigilant on your gluten intake and keep looking for other allergies.
I have an allergy to Wheat, Barley, Oats, and Rye, with Very High to Extremely High Genetic markers. I am told I do not have Celiac Disease can you explain this? I avoid all Gluten–but even going on a gluten free diet I have not gotten any better. I am also very b12 deficient–I don’t understand any of this–I still feel like garbage after everything I have taken out of my diet. I am currently now removing all grains, I am limited on what veggies and fruit I can eat because it seems everything I eat effects me gastrically in horrible ways–any explainations? I have heard of LGS or intestinal permeability can an allergy cause that as well?
Celiac disease is not an allergy. So you can be allergic to gluten without having celiac disease.
How long have you been 100% gluten free?
I have now been barred from two “gluten free” sites because I make people aware that the gluten free diet is not gluten free it has contained 200ppm of gluten per kilo up until 1st January 2012 when it was reduced to 20ppm and there has been no explanation as to why it was reduced. To avoid all gluten you need to know where it is legally hidden.
There are distinct differences between Coeliac Disease and an allergy even a “Food-exercise induced allergic reaction” so if you have to totally avoid all gluten you are basically on your own even if a diagnosed coeliac as well, you can be bot coeliac and allergic to gluten which is not catered for.
In what country are you referring regarding 200ppm vs 20ppm laws for ‘gluten free’? Do you have references to news items or government websites etc?
I refer to European Union, which introduced new food labelling regulations from the 1st January 2012 foods labelled as “gluten Free” cannot contain more than 20ppm the level before was 200ppm. Foods labelled “very low gluten” may contain no more than 100ppm. This is supposed to be law throughout the EU.
Had you read my 10.35 post you will see that I mentioned being diagnosed twice, which had a gap of 45 years in between. All I seem to hear is false positives and false negatives yet a skin prick test if positive will give a diagnosis of an allergy now again another inaccurate test? what are the positive tests for coeliac disease or gluten allergy?
As this condition is not IgE mediated but delayed why would my arms swell and become very red the next day following my test?
It is not as simple as “stay off gluten” as to some it is a minefield with food/beverages and drugs as there are many that do not have to be declared on labels which is my problem and others do not understand.
Going on 4 yrs. I have tried many different diets, nothing has worked. Dr doesn’t think bile reflux is the cause even though I have excess bile in my stomach as a result of gb surgery. I have gastritis symptoms daily. I have been completely grain free now 4 dtays, minimal benefits so far.
Possible answer to my problem is gluten triggering a histamine response : http://www.jimmunol.org/content/174/3/1657.full.html#ref-list-1
I am 37 years old and have struggled with many odd symptoms since I was an early teen. I always thought people were thinking that I was a hypochondriac, or making things up for attention. In my early teens I started getting horrible bouts of nausea when I woke up. I also got daily headaches. It was so bad, I would roll on the floor and break out in a cold sweat. My family thought I was just trying to get out of going to school. I wasn’t! Then came the fatigue. Over the years, my mind wants to do a whole lot of things, but my body just can’t seem to match what my mind wants to do. In my early teens, I started to develop anxiety and bouts of depression. In my early 20′s, after having my second child, I developed acne, which I never had even as a teen …
[Melissa left a long and informative comment, which I have turned into an article in its own right. Please see Gluten Free Success Story for 37 Year Old Woman for the complete story (well worth reading) and further comments, click the link above. -editor]
Hi. I found your site and am thrilled. Ive been dealing with so many symptoms…
Extreme fatigue
Bouts of nausea
Heartburn / reflux
Always have to blow nose / clear throat
Constant itching
Headaches
Bloating which is severe
Bad constipation
High liver enzymes ( neg. hepatitis)
Decided I would try gluten free. I noticed I smell better and had more energy, lost weight. I felt great. I think I, by accident ingested some gluten. Would it give you mouth sores on tongue and inside of cheek so bad I can barely eat, talk, the having to clear throat feeling is back.
I thought I was being so careful. Or does this sound like a reaction to an herbal supplement or because I’m weening off my mood stabilizer and anti depressants? I also have had a fever under 100 and a headache for 3 days… Sometimes unbearable.
Thanks in advance. Sandy
A small amount of gluten could really set you back, and even if you are very careful, it is hard to be perfect all the time. Never the less, you should keep an eye on how the other things you mentioned might effect you.
Sandy, just a quick note to you. Yes, the mouth sores (or on the tongue) are signs of gluten contamination. You must have ingested some unknowingly and the following day you can develop these pesky sores. I get them too, and sometimes they make it hard to talk or eat. You are doing well on the diet, but in my experience there is a point where we become complacent and assume that we know. Yet we pay for being arrogant. I have been humbled many times.
The last 10-12 days I had ingested some gluten accidentally, and was up half the night riding the waves of my bodies reaction. I am now super careful. I am having a fruit and vegetable smoothy for dinner. I was in the hospital overnight, getting blood transfusion, because I became so anemic. I still obviously have some issues with absorbing nutrients. I have been on a gluten free diet, for years and I have had many setbacks. I do best on a diet of home made food (from scratch), and even here at home I had to designate a toaster, cooking implements, sieve, jam, honey, etc. gluten free.
As for the post nasal drip from gluten ingestion, it is another common effect. This is why we struggle with constant sinus infections. The fever and headache could be connected to this, but it could just be a viral infection of cold or flu.
I don’t see how your herbal supplements could cause you problems, unless they contain gluten ingredients. In my experience supplement manufacturers pay attention to things like this.
As far as you prescription meds are concerned you can always check some web sites for side effects and possible allergic reactions. Good luck.
There needs to be more knowledge about the effects of coeliacs and histamines as it does account for some of what I read on here and is normal for coeliacs to have excessive histamine
http://www.jimmunol.org/content/174/3/1657.full.html#ref-list-1
Recently a friend and I were discussing my series of tendon injuries and she asked if I had any other health issues. I mentioned, without expecting it to mean anything, that pretty much all my life I’ve had itchy skin and chronic diarrhea. She asked if I’d been tested for Celiac and thought I could have that or just gluten allergies, and she sent me a few links including this one.
I see a lot that’s familiar here. Besides non-rash itchiness and diarrhea at least half the week, I defecate 15-20 times a day, pee way more than that (at times every 10 minutes), and my stomach is always a bit uncomfortable (I was shocked when I discovered that other people don’t experience hunger as a painful sensation). I also have a fair amount of joint pain, and as I mentioned originally, I’ve had issues with a number of different tendons getting damaged. I also clear my throat a lot and tend to be sniffly.
So this all makes me think, maybe I have a problem with gluten (unless someone here can suggest something else that would result in the same sort of symptoms). But I probably won’t have the celiac test, because I just don’t have the money for doctors.
My question is, in terms of gluten, would I see an effect from just lowering the gluten in my system? Because I see that making sure your diet is completely gluten free is pretty tricky. And it sounds like for some people, even the tiniest bit of gluten messes them up. So I’m just wondering if it’s an all or nothing thing, where I won’t be able to tell whether gluten is the problem unless I completely cut it out, or whether just cutting way down on things with gluten should, over the next few weeks, show some change that would at least let me know if I’m on the right track.
Hi Charles,
For most people, it’s pretty close to an all or nothing thing. For me, the more gluten, the worse the symptoms, but I’m not sure that I’d have known for a fact that gluten was a problem had I not completely eliminated gluten from my diet. And at the low end, the symptoms were still pretty bad.
So I suggest to you that you eliminate ALL gluten from your diet. Don’t stress if you slip, but do remember that each time you do, the ‘gluten clock’ gets reset and you have to start over, until either you’ve given it a good try (a couple of months) or you see that it really is making a difference. Then you’ll know. From there, you can experiment to see if you have a tolerance for small amounts of gluten or not, if you feel like revisiting your symptoms.
I really believe that cutting out all gluten is the only way to know for sure.
Also, if you’re celiac, you won’t know, you won’t know if you’re celiac or have a gluten allergy. If you are celiac, you have to cut out all gluten, regardless of how you feel, or risk other complications. That’s another reason to cut out all gluten.
Do please let us know how it goes.
Having now been diagnosed twice as a coeliac and have my coeliac disease well under control I found the answer to why I had continued symptoms when on a “gluten free” diet so I shared this information with many others. If you want those who claim to care to avoid and ignore you share your information I did and have lost a lot of faith in others who should know better.
The gluten free diet does not suit every coeliac.
Hi Jack,
Sorry, but I think I missed the point of your comment. What was the cause of your continued symptoms?
When you say that the gluten free diet does not suit every celiac, what do you mean by that? Because suit you or not, gluten-free is your only option if you are celiac and want to stay healthy!
Sorry allergy guy but it is not the only option open to some coeliacs as indicated in a previous response, according to the American Journal of Immunology coeliacs have an elevated amout of mast cells that secrete histamine, histamine binds to the gluten peptide creating more histamine which equals overload and brings about allergic reactions, therefore a health risk to some coeliacs as I believe blood pressure of 210/108 to be rather high. the link to this has already been posted but is of interest and may answer some questions for others if read.
http://www.jimmunol.org/content/174/3/1657.full.html#ref-list-1
Hi Jack,
You have posted that link before, I’ve not had time to go through it yet. Being a scientific journal, it probably won’t mean much to many people. So in your opinion, what alternatives do celiacs have to manage their disease, based on the article?
I have read other posts where coeliacs are referred to the gluten free diet and have continued symptoms but never ever consider that the permitted gluten in foods etc may just be to much to toleraste, because a healthcare professional says stay on the gluten free diet it does not mean its right for you.
To avoid gluten as much as you possibly can do and if you feel you are still suffering remove ALL gluten from the diet just to see if it helps.
Today I had a cooked breakfast at 10.20 by 12.30 an allergic reaction starts, heavy sweating/then cold..breathless, bloated stomach.
I drank plenty of water obtained more, vomitted twice. slept from 15.30 to 17.10 and been to the loo twice with big “D”.
Breakfast was small portions of, 2Xbacon, 0.5 tomato,baked beans, button mushrooms & scrambled eggs there should be no gluten in any of this food but might have been in the coffee.
I am now tired with a fuddled throbbing head, what is going on as coeliac disease is clouding these other issues.
Well, there could have been gluten in your breakfast somehow, but it is also possible that you’ve become sensitive to other foods, or even just had ordinary food poisoning or flu. How long have you been gluten free? Maybe you’re not healed enough and react to ordinary food?
There may well have been gluten in the foods ie Dextrose in the bacon, it can also be found in baked beans as a sweetner and scrambled eggs as a thickening agent even the coffee could have it as a sweetner. Or it could be the histamine that is found in processed foods.
Food poisoning no my 80 year old father-in-law ate the same as me and filled his plate from the same source.
I was first diagnosed at 6 years old in 1955, 1962 biopsied to be told no get back on proper foods. This reappeared in 2007 45 years after the first diagnosis and all the symptoms are identical.
I first avoided any wheat based foods eight weeks prior to biopsy and still had a positive result I then went “Gluten free” in November 2007
The “gluten free” diet gave me the same symptoms as eating normal bread.
My bloods are IgA neg, IgG neg, ttg 0.9, ggt fine, AGA 42 (gluten antibodies still in bloods) HLA-DQ2positive (40% of UK are the same)
Endoscopy biopsy = Marsh 0= Normal
IgE to wheat neg skin prick to wheat neg
A lot of my results or symptoms are not what can be expected from a coeliac today.
I can now only put it down to excessive histamine
You may be right. Mean while, I suggest you cut out all ‘long-shot may contain gluten’ foods just to be sure, and see if that helps. Glad it wasn’t food poisoning!
I am caught out by the legally permitted gluten so eating out is a nightmare otherwise there is nothing at home with gluten in.
Sadly the medical profession do not understand my condition or even want to know.
I truly believe all gluten intolerant or celiacs benefit from going grain free, dairy free and even lecithin free. I have finally healed my gut issues by doing so.
Hi Penny I would not go as far as eliminating all you suggest without good reason as it is not the best advice.
Have you had a repeat biopsy to see if your gut has healed?
How are your bloods as AGA can still indicate antigliadin antibodies in the blood ?
I cannot respond to any answer you give as its holiday time starting tonight.
This all started again 5th January 2006 and if the medical tests are collated it comes across as reactions to histamine, as a coeliac you may have elevated mast cells which excrete histamine, the gluten peptide stimulates these mast cells and produces more histamine add to that the many foods that contain histamine that you eat. These might not have been a problem until your coeliac disease is triggered, but in total may result in allergic reactions, therefore the amout of gluten in european foods are a risk to these coeliacs.
There is also the point of food-exercise induced allergic reactions from the minute amounts of gluten in the gluten free diet, ie climbing steps/stairs
I have recently eliminately gluten after having several years of constant congestion, sneezing, itchy watery eyes, runny nose. I have read a lot about gluten allergies, but have never seen these types of symptoms associated with Gluten. The only info I have found is about stomach issues. Why are these symptoms not listed anywhere?
Almost any allergen could potentially cause almost any symptom, and gluten allergy symptoms are no exception. It is a mistake to try and diagnose what you are allergic to based on symptoms. All you can do is guess that you might have allergies based on the symptoms, then try to confirm this and work out what you are allergic to.
You will certainly find more than stomach issues listed as allergy symptoms on this website. It is impossible to list every last symptom because some people have their own private list of symptoms, and you’ve found yours.
I have ulcerative colitis, interstistial cystitis, eczcema, chronic ear and throat pain,chronic “depression”, severe anxiety, and possibly a patch of psoriasis but I am not sure because I am done seeking help from doctors. Eating a vegan gluten free diet has gotten me off the ten toxic pills I was taking a day for my UC for the last 6 years. Its been 9 months since I changed my diet. and four months since I stopped medicine (I had to slowly ween myself off the medicine so I didn’t get sick until my body had a chance to heal itself) I have’t seen a doctor since. Thank god because I have no health insurance and my medicine costs up to $1000 a month. None of the medicine they gave me ever helped me get better or live a normal life. They would give me so many steroids over and over again and I would not seem to heal. Doctors will not even consider that anything your eating or drinking has anything to do with it. If they did than all of the greedy insurance and prescription company’s would stop getting rich off of helpless suffering poor people. I am just thankful that I met someone who had krohn’s disease that suggested I eat gluten free. When I told my GI doctor I was going on a gluten free diet he was concerned about me not getting enough nutrition and losing weight. Instead his solution was putting me on a leukemia drug called 6mp. I asked him if it had any serious side effects because prednisone messed me up really bad. He said no. I went home googled 6mp and was scared outta my mind That crap causes brain cancer and other cancers. Are you kidding me I’d much rather lose weight and be “malnourished”. I went on a 3 month cleanse. looked good cuz I was skinny and felt awesome. Never took that cancer drug that cures cancer and causes it at the same time. Screw insurance company’s and screw drug company’s we all need to wake up and have a revolution and stop putting up with all their greedy lies and garbage “Health Care” no one is healthy anymore no one, but they sure are freaking rich.
You’ve made some great points, Zora.
Has the GF diet cleared up all your problems?
I still get eczema whenever I touch any soaps. try to stay away from chemicals. My bowels are healing slowly. I mean its not going to heal overnight. I was hospitalized for anemia because I lost so much blood. The drugs never healed me because I feel my immune system wasn’t the problem. That is why the drugs never worked. The problem was my stomache and bowels were reacting to something I was consuming. I would say I am definitely getting better and don’t take meds but haven’t healed completely yet hope to some day. I asked the doctors when I would feel normal again when I was in the hospital they said maybe never. I have some hope now. the best thing is that I don’t take medicine thank god. They are expensive toxic and dangerous.
Further to my last about “Histamine” I have come across another from “The American Journal of Clinical Nutrition” that makes good reading and may answer many questions, they did for my as I am now taking triple antihistamine doseage, Sadly it little known about here in the UK so my research is now guiding my healthcare professionals even though there is need to make others aware.
The article in question:
http://www.ajcn.org/content/85/5/1185.full
Accumulated histamine mimicks allergic reactions
About two years ago, I started showing signs of what doctors called IBS (mostly constipation, but sometime diarrhea too, blood in stool, etc.) and then started getting heartburn. Before I realized it was heartburn (it took me a little while to figure it out, as I’ve been fairly healthy all my life) I was having horrible panic attacks– a response to the nausea, fast heartbeat and dizziness I’d feel.. My doctor had me go on prilosec, and my heartburn went away, but I was told I might have to take it every day for the rest of my life! I wasn’t happy with that answer, so I slowly weaned myself off of it over a long period of time, and I’m proud to say I rarely ever get heartburn anymore and haven’t taken prilosec in many, many months. However, my other symptoms did not go away– in fact, they got worse. Besides the stomach issues, I got really horrible headaches which would sometimes last up to 5 days in a row! I always feel tired, whether I’ve gotten a lot of sleep or barely any. I take a multivitamin every day. I was told I am not diabetic, anemic, have a thyroid problem, and I’ve had more than one blood test where the doctors tell me I am “perfectly healthy”. I’m a normal weight for my height and age (not overweight, not “underweight” or whatever the correct term is). When I was still on prilosec (when things were really bad) I stopped eating, then would eat only during the day (as my heartburn attacks were triggered mostly at night) until I got well enough to eat normal, small meals throughout the day. I lost a lot of weight during that time and lots of people were complimenting me but I felt miserable– I wanted to get complimented for losing weight from eating healthy and exercising, not because I was too scared to eat due to a potential panic attack, heartburn, stomach problems, etc. I felt miserable! I’m doing better now, but one night last week I had a half of a really heavy red beer and a slice of pizza. I woke up in the middle of the night sweating and vomited, as well as had a bad stomach. I knew it wasn’t food poisoning, because I’ve had food poisoning before, and trust me, food poisoning feels a lot worse. Call me crazy, but this just FEELS like my body wasn’t digesting properly. I’ve seen 3 doctors now over the past two years and have been unhappy with all three for various reasons. My boyfriend suggested I might be allergic to gluten. My boyfriend has tried to help me a lot in the past year and a half, and I’ve tried eliminating lactose (found no difference after several weeks), and I’ve tried getting more fiber (this would just make me more bloated and sick, to the point of extreme discomfort), but reading up on gluten allergies, it seems to make a lot of sense. I refuse to believe in the IBS diagnosis, which I feel is a little like the I-don’t-know-what-this-is-so-we’ll-call-it-an-obscure-name disease. I tried looking up IBS diets and was exasperated! Every website said something different. So I’m going to try to eat less and less gluten to see if I get more and more energy. Please, any suggestions or comments, let me know. It has been a hard two years and sometimes I can deal with it, but sometimes I get so tired and depressed from the constant pain, fear and discomfort that it makes me want to burst into tears! Oh and I should mention that I constantly have awful neck, shoulder and back pain. Unfortunately, though, I can’t afford all those chiropractic, massage and acupuncture bills. I do love acupuncture though, as I’m more a fan of holistic medicine then masking your symptoms with potentially harmful, money-making pharmaceuticals. Anyway, I know I’ve put a lot down here, so if you have any questions, please ask– I’m looking for some answers, but also support and encouragement.
I d say stay away from crappy food . Eat healthy all the time. And only eat gluten free. you say you ate a piece of pizza and a beer and felt like crap. You can’t do that or your body will never heal itself. If you just eat gluten free sometimes it won’t help. you have to do it all the time. Coffee, and Alcohol is very very bad for us IBD and IBS people. If you think that its okay to drink these things your wrong. Try it. Stay away from them and you will stop cramping and bloating. Also I would start stretching and working out for your back and body aches. Working out and staying in shape on a regular basis helps tremendously. Trust me I know what its like to be in chronic pain but you just have to suck it up and go to the gym if you want it to feel better. Also I read this book called how to cure ulcerative colitis naturally.(ulcerative colitis is pretty much like IBD but worse) I recommend doing this diet for at least 2-3 months. It is a fruit and vegetable diet only. I guarantee if you eat this way for 3 months and go on a gluten free vegan diet after your bowel symptoms will be 75 to 100% better. My entire bowels were ulcerated and bleeding and eating this way got rid of the ulcers bloating cramping and constipation. and a lot of other issues with my body. I plan on going back on it in a month or two just for a nice cleanse of all the toxins in my body.
Also I am no doctor but, the fact that you have blood in your stool means you have an ulcer. Blood in stool is not a symptom of IBS. It is a symptom of krohns ulcerative colitis and celiac. Do you see a gastroenterologist? You may have IBS and one of these other serious health conditions too. I am not trying to scare you but blood in your stool, if it is not hemroids needs to be looked at and I am pretty sure that IBS does not cause blood. Ulcers cause blood. Just a suggestion. Ulcers are very hard to heal. That is why your diet has to be very strict.
Blood in your stools can be for many reasons including untreated Coeliac Disease, it does need checking out by a professional as it can also be bowel cancer.
On the 14th May I saw my Dermatologist and showed him what had been happening lately ie the Turkey return trip plus two other recent episodes. I also gave him a copy of the Abstract from The American Journa of Immunology http://www.jimmunol.org/content/174/3/1657.full.html
I am now prescribed Cetirizine 10 mg twice daily topped up with Piriton up to 6 per day which take three weeks to be effective. These drugs are both antihistamines and are having some effect on the histamine but still permit coeliac symptoms to continue.l
That’s a very good point, Jack. If what you mean by “the gluten free diet does not suit all celiacs” is that the permitted gluten in foods (currently 20ppm in most countries if I’m not mistaken) is too much gluten, then I agree with you, and I would say that it isn’t truly gluten-free. It should be called “near gluten-free” or something like that.
So yes, if you aren’t improving as a celiac, avoid ALL gluten. Which is a challenge in itself. I’ll see what research I can do on that.
Just returned from a great week in Turkey, only one bad episode until I had to board the aircraft up a stairway, which quickly triggered an allergic reaction that lasted over 4 hours again no reason for it to happen
There must have been some reason, I wonder what it was?
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