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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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4 posts in this topic

Ok. Here's my story.

In March, I started having some horrible, gut wrenching pain below my ribs, with bloating, diarrhea, nausia, you name it. I figured it was a virus, until the symptoms didnt go away. So, I went to my family doctor. She had me tested for Celiac Sprue. One of the antibodies came up at a 40 (30 or below being a moderate reaction?) or something like that. I'm really not sure. And put me on a gluten-free diet, then sent me to the Gastroenterologist.

I was on the gluten-free diet for 4 weeks, started to feel better when the Gastroenterologist said that this blood test that my family doctor used was not difinitive, and he wanted to run more tests. So, I had to go back on a wheat filled diet. He took more blood, and did a biopsy. The biopsy came back normal. The other blood work, normal. Now, by this week, because I was told to go back to eating a regular diet, I'm having soooo much pain again, it is almost unbearable. And the crazy thing is, I havent really been eating a whole lot of gluten/wheat products. I just went out to dinner twice, ordered things that would be less contaminated, so to speak, and at home continued to eat gluten-free because it overall makes me feel better.

So I called the Gastroenterologist and asked what's up with my results - Did I not eat enough wheat? They said that the blood work was sent to a very special lab, and these particular test was not dependent on gluten in my system. And then she said "Celiac Disease is just not in my mechanisms". What does that mean? What test(s) could they have possibly done? And why am I still feeling so miserable? I'm wondering if I'm allergic to wheat. Can a wheat allergy mock celiac disease symptoms? I mean, I not only felt better stomach wise on a gluten-free diet, but I had more energy, less fatigue, less achiness, less mood swings, less everything! But now I wonder if it was all in my head.

I probably should add, I have tons of other allergies that plague my life. I take two antihistimines: allegra and zyrtec, a steriod nose spray: rhinocort, another nose spray: astelin, advair and albuterol for asthma, and I get two allergy injections once a week (one in each arm). I'm frustrated because my Gastroenterologist is so overbooked with patients, I'm going 4 weeks between appointments, and I just want to feel better! Where should I go from here, what questions should I be asking, should I talk to my allergist instead of the Gastroenterologist. I just dont know anymore.

Thanks for your advice!

Melanie

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Melanie,

I'm sorry you are not feeling well, and having such a hard time with your doctor. However, you can completely do away with the stress of dealing with the doctor if you want to. You have learned from the diet itself what makes you sick. I have never heard of a Celiac blood test that does not rely on gluten consumption. Enterolab's stool panel can be done while glutenfree, but not the bloodwork. A biopsy will only come back positive when there is significant damage to the villi. It is very possible that you are in the early stages of celiac, and the damage just has not happened yet. 4 weeks glutenfree could very well have been enough to mess up the bloodwork results. You could have a wheat allergy, yes, but the treatment is the same: a glutenfree diet for the rest of your life. You do not need a doctor's note or diagnosis for that. It is nice to have confirmation from a doctor, but it is not required. Many celiacs use the improvement on the diet as confirmation enough. Feel free to come back and ask us questions, we will do our best to help!

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Melanie,

And then she said "Celiac Disease is just not in my mechanisms".

Melanie,

This sounds like your doctor tested you for the HLA-DQ2 gene which is connected with celiac. Did she say anything about gene testing?

You can still be gluten sensitive if you do not have the HLA-DQ2 gene.

Lisa S

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Well, I had food testing done for allergies because I have a ton of other non-food allergies. And, I had a mild reaction to wheat and dairy. So, I have taken both out of my diet and am feeling tons better. My eczema has cleared up as well. The doctor said I could try re-introducting the dairy back into my diet slowly in about 6 months, and same with the wheat. I'm nervous about the wheat though, as I only got negative tests for the celiac disease. So, I continue to eat gluten-free anyway, because I feel better.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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