Gluten Free Diet and Celiac Disease Self-Diagnosis

by Guest Writer

Gluten free diet is one thing, a celiac self-diagnosis is another.  It is a start, testing is a good idea.  Here is a personal anecdote about celiac self-diagnosis.

The following was contributed by Agnes Mouroulis as a comment.  It is so long and detailed, that I thought I’d publish it as an article. This may be a very late reply to this email, but it might be useful for others reading the comments.

I don’t know for sure whether I have celiac disease or gluten allergy or even both. I diagnosed myself after a lot of daily misery and taking 8 kinds of medication to alleviate my various symptoms.

Gluten Symptoms

I did notice that in the morning after my stomach was empty for 10-12 hours I would feel well, but as the day progressed I would feel worse and worse, and by the evening I was is agony: bloating, sweating, sour stomach, acid reflux, swollen feet and hands, rapid heart beat (pulse of 200 while sitting), tingling in hands and feet, blood pressure going up and down, and feeling like I just got a huge injection of adrenaline.

I realized that the one ingredient which I knew was a constant was wheat or some form of gluten in each of my meals. I also remembered that I felt much better on the Atkins diet and on a Candida diet years earlier. So, I went on a gluten free diet and now that I made a very serious effort to be gluten free, I am finding my way back to my old self.

I am more emotionally stable, I have more energy, my brain fog is gone and I am loosing weight. But most importantly, the point I wanted to respond to is your question about emotional response to gluten. I can tell you, my earliest warning sign that I had accidentally ingested gluten (most often in a restaurant meal) is my emotional response. I am like some angel/devil creature and sometimes those around me don’t know which personality is going to pop up next.

I become unbearable, if I say so myself. I would have never believed this myself if I was not living through this. And worse, I know I am being snappy and short and bitchy, I can’t stop myself. Of course, later I have the other horrible symptoms coming along too, but my emotions are my first indicator for something worse to follow.

I have to say, that I have been on this diet for over a year, but only since I became very serious and vigilant about being gluten free, had I seen the true rewards of my hard work.

Gluten Free Diet – Stick With It for Longer

And a word to all those who want to “try gluten free for a week or two”, you have to have a more committed attitude to feel better, because I you don’t approach this problem very seriously, you might conclude that your problem is caused by something else, and discard gluten as the critical factor that is making you sick.

Will Your Doctor Help with your Gluten Free Diet/Gluten Allergy/Celiac Disease?

Your doctor does not have the time, the inclination or the training to sit down with you and work out a solution. You might think that should be so, but it is not. You can get divided up by specialists who will look at a narrow field of your body and say, “Yes, I see you have a problem with your digestion”, or “Yes, you have a problem with becoming borderline diabetic”, but nobody, not even your Family Doctor will put the puzzle together for you. You would think that the person who has all the information from the various specialist would look to see what it all means. But they won’t!

As I said, I was very sick, but now, I am down to 2 medications, no more anemia, better blood sugar control, no more repeated sinus infections, no irritable bowel or irritable bladder problems, no more dandruff (a big plus), etc.

Steps to Becoming Gluten-Free

What I had to do: I bought my own dedicated toaster (no more sharing), I bought my own kitchen implements, my own colander, my own cutting board, knife, I designated my own gluten free butter, mayonnaise, jam, put a notice on the yeast packet to remind anyone using it to use only a clean measuring spoon, otherwise it will become contaminated.

I thoroughly scrub, and wipe and wash everything I have to share with gluten eaters. If I am not sure of how clean something is, I was it again. My husband cuts his crusty bread by the sink, and before I do anything else I clean the counters of bread crumbs. Bread crumbs are very insidious, they get into coffee cups, cracks, etc.

Sorry, my answer went on for so long. We all want to contribute to others, and this is one of the best human traits we have. I consider this my contribution to fellow sufferers.

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{ 5 comments… read them below or add one }

1 Mindy January 17, 2012 at 03:16

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…..

[the full text of this comment has been moved to its own article: about severe gluten allergy symptoms. Check it out and leave your comments! -editor]

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2 Alexis October 20, 2011 at 13:50

hello,
I have been having symptoms for almost a year now I have had to discontinue my schooling just from the sheer pain and everyday fear now of not knowing what has been wrong with my body. I ready your article and it literally brought tears to my eyes I am 22 years old I am on beta blockers(pulse 253), 50mg prilosec twice daily with carafate, also I am taking medicine to help me retain salt for days my blood pressure decides to go too low, I have not yet been tested for this but I am about to start a gluten free diet as well as get the testing done I pray that this is the cure and I can go back to ME not this…. your article has given me hope!
Thank you,
Alexis

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3 Allergy Guy October 20, 2011 at 14:31

Hi Alexis,

I’m sorry to hear about all the health problems you are having, it sounds very debilitating. It’s really too bad that you feel you can not continue with your schooling for now.

With luck the gluten free diet will help you out. Remember to cut out all gluten for at least two months, or you won’t really know if gluten is a problem or not. It can take weeks for the effects of gluten to clear out of the body, for your body to heal, and for you to feel better. Even small amounts of gluten can set you back to the beginning.

Do please let us know how you’re doing. Good luck!

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4 Bridget April 16, 2011 at 22:03

Whenever I eat something in “Breadcrumbs” like fish or snitzel beef or chicken. After 1 hour or so I get terrible pain in the side and feel bloated.Even though I do not have a large appetite.It is so anoying as I use to love my food in breadcrumbs.I started beginning of last year after a terrible case of influnza that would not clear up. Also when my back went and for 8 months I had to go to the doctor every week….Still have problem with my foot.I do have the numbness and tingling in the hands and feet also….

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5 Allergy Guy September 21, 2010 at 18:44

Thanks Agnes, for all your great information.

I agree with everything you said – it is nearly the same as my own story.

It sounds like you are completely convinced that any gluten at all will be harmful to you, so I guess getting tested for celiac won’t really make a difference to your life, either way you will avoid it.

I do suggest to most people that they get tested though, to be sure they know what they’re dealing with. For those with celiac disease, it is important to avoid all gluten, not to go on just how you feel.

Anyhow Agnes, I’m glad you’ve found the key to good health. Cheers to you!

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