Gluten Allergy Description, Severe Case

by Allergy Guy

Gluten allergy can have very severe and unusual symptoms.  Here is an example one woman’s experience with a gluten allergy.

Mindy left this as a comment on the Gluten Free Diet and Celiac Disease Self-Diagnosis post.  I think it deserves its own article to highlight how severe a gluten allergy can be.

Keep in mind that this is self-diagnosed, so it can’t be considered scientific.  But that doesn’t matter to the individual experiencing the gluten allergy attack.  If a gluten-free diet works to alleviate symptoms, then that’s what you’ve got to do.

hello, To start… I personally say, if you are having unexplained symptoms go gluten free and then go to your doctor and say … Look at this study I did on myself____________________.

I want to tell you, before I went Gluten Free, I was tested for Celiac and I was told in no uncertain terms I had no problems with gluten and I should not even consider giving it up. But…..

I would like to share my story…. My symptoms went on for over a year and no one could explain them. But, oh my, the finger pointing between doctors was amazing! The triggers didn’t make sense, but it was always be in the morning if I was going to have symptoms; however, the “safe”time got progressively later as time went on. (“safe” time: If I did nothing until about 10 am when this started Nov of 2010, then it became 1 pm about 6, then 3 pm about 2 months ago I was okay to do drive and go about my day). But we never knew what was going to trigger it, driving, looking as pictures, giving speeches, doing laundry, cleaning, etc….

But, the symptoms where always the same… first the pictures on the walls would start to bounce, my speech would be slurred (unknowingly), I would repeat myself (babbling and unknowingly), I couldn’t walk or crawl as I had no balance at the peak of the episode. There was one medication that worked, Meclizine. It is used for vertigo. It basically suppresses your entire nervous system. So all those symptoms as well as not doing anything but sitting or lying there helped things get better.

Also getting my neck adjusted by a chiropractor seemed to help at times.

The last 3 weeks before I went gluten free, my parents had to drive me around with a wheel chair in the back of the car because we never knew when a spell was going to hit. At that time – there was no “safe” time. I also have a walker at my apartment just in case I should need it. I haven’t seen it for 7 days! The first 3 days of gluten free I kept it around!

I have since found out (today) that the gluten intolerance is actually triggering anxiety.

So ——– Yes – go for it – don’t wait for you doctor. Do your own study at home while you are going to the doctors if nothing else. And keep a journal!

Although my symptoms are very different, Mindy’s symptoms ring true, they are in many ways exaggerated versions of what I can get when I eat gluten.

Note that not getting a celiac test is not the best advice for everyone.  It is a good thing Mindy was strong enough to ignore her doctor’s unhelpful advice!

What symptoms do you get when you have a gluten allergy attack?

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{ 10 comments… read them below or add one }

1 Colton December 4, 2015 at 01:50

Help please! I have a sister that has to carry Benadryl and an epi pen on her at all times because of her reaction to some foods, she has had many er visits and a couple life flights. Her reaction is so server that she goes in to shock and is unresponsive and also can belly breath. It seems as if it is getting worse, the last visit she had fluid on her lungs, I’m wondering which visit will be her last. Any directions you can point me in? Anything can help!

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2 carolyn hunter February 14, 2015 at 17:27

I am as severre as the above stoiry, but it may be causing my addisons disease and other problems?

i did have a DNA positive result, which showed i was allergic to gluten, had one allele in cheek swab test. BUT GOING GLUTEN FREE HASNT YET HELPED MY ADDISONS DISEASE AND PERIPHERAL NEUROPATHY OF HANDS AND FEET AND LEGS.

PLEASE SOMBODY ….please ….TELL ME OF A NEARBY DOCTOR THAT TREATS THIS.

I AM IN OROVILLE ca. AREA……. AND CAN ONLY DRIVE A LITTLE BIT. …….WRITE TO ME ASAP, AT; (email removed – if you want to contact her please leave a comment – mark it private and request email. Our policy is not to publish emails on this website -editor)

MY CURRRENT DR. IS NICE BUT DOESNT KNOW ANYTHING ABOUT THIS ALLERGY OR CELIAC DISEASE IF I HAVE THAT TOO.

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3 Meredith August 5, 2014 at 16:16

Thank you for your posts!! I went undiagnosed for many many years with severe anemia, Psoriasis, headaches, stomach upset, nasal symptoms, and fatigue to name a few. The drs would treat each issue indiuvidually and the issue was still there. I ended up on an atkins diet one year and almost all of my symptoms went away in time. I then realized that atkins cuts out gluten (wheat and Barley). I ended up self diagnosing and have lived in a very healthy state for years now. I know when I come in cotact with Gluten right away!! Most restaurant ice teas have it and I react right away. So now i drink more water than anything or gluten free hot teas. I am grateful for the blogs on the internet and sites for information on these types of things. Without it, I may not have put two and two together!!!

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4 Allergy Guy August 5, 2014 at 19:49

Really glad this helped, Meredith! I didn’t know iced tea might have gluten in it, thanks for the info.

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5 lisa April 23, 2013 at 13:40

I was tested for vertigo, but it came up negative.

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6 Lisa April 22, 2013 at 03:38

What a story about the severe reaction to gluten than Mindy shared. Several years ago I was diagnosed with vertigo and I take a blood pressure med (Verapamil) that works with vertigo and although it has not fixed the problem, the spells are manageable and no longer severe. I wonder if vertigo is a symptom of gluten sensitivity? I have the gut symptoms but did not think about other symptoms like vertigo. Anyone else experience this? Thanks, Lisa

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7 lmtroch July 8, 2012 at 05:36

Whah! I’ve been reading, for about 45 minutes now. I’m amazed I what I’ve learned! I’ve been feeling very, very poorly for a few years now. However, I’ve always had stomach issues. Diarrhea, constipation, severe cramping, since middle school I can remember riding my bicycle as fast as I could to get home and go to the toilet! Lately, it’s been effecting me terribly. I have pain in my right side and anxiety so bad that I feel like I could die. A few times, I thought I was dying. For years I’ve stuttered a bit, but only at times and lately I cannot keep a clear thought in my head for even a few seconds. I used to write, write, write, but I just can’t do it at all any more. I sweat, I’m in nearly constant pain, have slime with my stool, suffer anxiety and the crazy things going on in my stomach and bowels is just maddening. I can feel so tired, that I need help walking to the bathroom. The symptoms seem to get worse and worse and I get more and more different symptoms as well. I’ve been tested and retested, probed (literally) and have seen most of the specialists out there and everyone says I.B.S. So, I started taking some meds after my colonoscopy, but then things got even more scary. I raced to the emergency room after getting a rash that took over my entire body. My eyes, throat, etc. AH! I was actually looking into gluten intolerance for my son who, not so ironically anymore, has Autism. At the E.R. they gave me Zyrtec, which I took for 2 weeks. In those two weeks I felt better than I have in a very long time. That’s when I thought, perhaps this is all an allergy! My findings have proven to be quite interesting. I’m off to the doc for sure!

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8 Stephanie February 5, 2012 at 01:06

Ok, so this game of life has hit me hard! I have been stressed for years. I also have herniated discs and a thyroid issue (goes from hypo to hyper). Course, the Docs gave me prescriptions but the stress and pain got worse. Getting a divorce didn’t help matters and then my symptoms becoming so bad I could no longer take care of my children.
I was laid off 2 days before Christmas, applied for unemployment, and still do not have any money at all. I think getting laid off just was the icing on the cake. I have to go to the food bank and only get to see my kids minimal. My ex does not understand these severe issues.
The symptoms are severe knots and pain in my back, panic attacks, too much yeast (thrush, yeast infections, scalp fungus), sleepless nights, gas, bloating, etc.
I have gone to Docs and no answer. I decided to do this Gluten Free diet and it has been 3 weeks. The pain and knots are gone most days, still working on the other issues but it is much better! I still have panic attacks so I think I may be allergic to something else. Unfortunately, having no funds I can’t go to the Doc (a new one)!
I would like to say though being gluten-free and drinking Apple Cider Vinegar ( only Bragg’s-natural) is also helpful in maintaining your mood, weight and yeast symptoms. I appreciate everyone posting so I can try to figure this mess out. Thanks!

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9 Allergy Guy February 7, 2012 at 08:56

Some of your symptoms may be stress, and keep in mind that stress is additive, and that allergies are a stress.

You’ve taken a big step in the right direction, discovering that a gluten free diet causes an improvement. And keep looking for other food allergies because where you find one, you are likely to find others. If you can find ways to reduce your stress levels from other sources, that will also be helpful. The better you feel, the easier it will be to deal with life’s other problems.

Keep at it, you’re on the right path!

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10 Allergy Guy January 17, 2012 at 12:31

Thanks for sharing your story, Mindy. Doctors definitely don’t have all the answers, in fact, they only have a very tiny range of answers for the entire range of human health problems.

I would suggest to anyone that they do get tested for celiac before going gluten-free. If you get tested and are not celiac, certainly you should ignore your doctor’s advice to continue eating gluten, in fact, why even ask the doctor at all? just do it!

For those who intend to go gluten free religiously for the rest of their lives no matter what, a celiac test may be redundant, but such people are few and far between, few have that kind of self discipline.

In your case Mindy, you have all the evidence and knowledge of consequences to avoid gluten for life. It is the most

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