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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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    • I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this: is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't. I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain? I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think. I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say...  I feel good  Feel good IT. You've done as much as anyone could to find an answer. Maybe there's one around the corner or maybe there'll be one in 5 or 10 years when the likes of Marios Hadjivassiliou, Umberto Volta or Alessio Fassano have completed their research. Or maybe not or never. It's in the 'nice to have' than the essential's for me now. Do the diet, note your symptoms, stay connected with your doctor so that if there is anything that sticks around suggestive of other things you're on top of it, but feel good and focus on that and enjoying life.  All the best!    
    • I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?  
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