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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.

Atypical Symptoms
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4 posts in this topic

Hi,

I am only about 8 mos into this gluten-free lifestyle, but I was wondering if anyone else has the symptoms I seem to have. I do not have the intestinal issues that seem so common with wheat/gluten sensitivity but I get tight in my chest and get a lump in my throat. Also, I was getting very very tired and irritable--almost depressed even-- in addition to the difficulty breathing. I was told by my doctor that only a biopsy can indicate gluten/wheat allergies but another doctor did blood work. It came up negative for celiac but I KNOW that wheat/gluten is my problem. I have eliminated it and feel fine. Except today I ws shopping and was getting a headache from missing lunch so I grabbed a McDonald's new holiday peppermint McFlurry. Oops, before I even got home I could tell it had something in it my system didn't like. I used my inhaler and am still feeling the chest tightness but it is better. I should have know better. Ugh!

Any insight into why my blood work was negative yet I feel lousy on wheat would be a great help. My husband is a natureopathic doctor and has tested me on wheat products and I test that they are not good for me but I am confused.

I also was wondering if I should have a biopsy just to determine there is no damage from gluten intolerance, any thoughts? But I don't even know if it would show up since my symptoms appear to be atypical.

Thanks for any helpful hints. Sometimes I get very discouraged being gluten-free!

Janice

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Your reaction, in some ways, sounds more like an allergic reaction than a celiac reaction to me, but we all react very differently so there might be someone on the board who is similar. Fatigue and depression are not unusual to celiacs (or many other autoimmune diseases for that matter) but the chest tightness and lump sounds asthmatic.

You could be a celiac, since somewhere close to a quarter of all celiacs test negatively on the blood tests. You could do a biopsy to look for damage if you are fairly sure you are having an autoimmune reaction to gluten, but the biopsy isn't infallable and damaged areas can be missed.

It could also be Non-Celiac Gluten Intolerance (NCGI) which has many of the same symptoms as celiac disease but the intestinal damage is not present. From what I understand, it can make a sufferer every bit as uncomfortable as untreated celiac can be; the only problem is that you can't test for it except to see how you do on a gluten-free diet.

Best wishes to you. I hope you feel better.

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Hi Janice, I agree with nvsmom that it could be more of an allergy.

I have similar reactions when I have milk and cheese.. and also my levothyroxine meds. My throat feels like it swells, inhibits my breathing, causes phlemn and a tightness in my back and chest. When I eat dairy-free Im so much better.

Hope you find out what is causing your symptoms.

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Even if it is "only" a wheat allergy, you still have to avoid wheat protein, aka "gluten," so don't be shy about hanging around and learning. As long as you recognize that you need to avoid the wheat family around here, you have common interests and nobody is going to quibble over diagnosis status whether it is an "intolerance," or something else... (as long as you don't start telling us to eat it !). B)

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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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