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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.

On My Third Month Of gluten-free Diet And Getting Worse?
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Hey guys! I'm kind of looking for some help, support, and advice here. Starting in October of last year, I woke up one morning feeling like I had a rock in my stomach for no reason and I knew something was different. I had a hard time initially describing my symptoms except I felt "full" and didn't know what else to say about it. My symptoms got steadily worse. I got to a point where I could feel hardness when I lay on my back just left of my belly button and when I REALLY pressed down while standing up. I can also feel a very strong pulse there. I had to sleep on my side though I have always been a belly-sleeper because it was uncomfortable to sleep on the lump. After seeing several doctors and having to wait a lot for test results, I was finally diagnosed after a biopsy/endoscopy in early April and have been (trying to be) gluten free ever since. I feel relieved finally knowing what is wrong with me, but I feel like I'm getting even sicker so I'm paranoid that something else could be wrong with me.

 

I can no longer sleep on my sides because I've been experiencing weird stiffness sensations in my sides, extending from my waist down to my hip. My left hip especially feels like it has a rock sitting against it. Sometimes I get weird pressure sensations across my back and back pain. When I try to lie down on my stomach, it no longer feels like specific swelling in my low stomach but like a generalized tenderness from ribs to hips. It also causes my back to break out in a tingling feeling and these weird prickly sensations will last a full day afterwards. I feel like I'm allergic to literally everything I eat. I get D every time I eat vegetables. I get gassy, squishy intestinal feelings whenever I eat cheese. AND THE BLOATING, HARD, FULL FEELING STILL REFUSES TO GO AWAY. I've experienced some headaches and fatigue recently (though I can't really tell if that's just humidity/stress). 

 

I am due for a checkup with my GI and gyno recently so maybe I can get a lot of these questions answered but I am really at the end of my rope. All I want is to feel normal again and I have to wonder why the heck I'm on this diet anyways if it isn't helping me. I'm a very anxious person and the fact that I'm getting worse just leads me to thinking the worst, like cancer and MS. Anyone who has had similar feelings or equally as rough a recovery would be really helpful. I'm just looking for comfort and any sort of advice you could possibly have.

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I was diagnosed in December and have just stopped getting sick in the past few weeks. It took a while to figure out where the gluten was hiding and what was making me sick. I'm also dairy and carb intolerant. Too many carbs feels just like getting glutened. Gluten free doesn't mean gluten free. I was still getting very sick from gluten free foods, then my nutritionist put me on only certified gluten free foods or those made in a dedicated gluten free facility. That made a huge difference but I was still feeling like I was getting it somewhere. I changed to gluten free makeup, hair and skincare products and finally started to feel "normal". Maybe you are still getting trace amounts somewhere like I was?

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Hi There,

It took me 5 1/2 months of being gluten free before my stomach pain let up. I am still recovering from other symptoms, but life is much improved without the constant stomach pain. It can take up to 2 years for the small intestine to heal and it seems to take a while for some of us to start to feel better. If you can eliminate dairy and eating out for a couple of months it should help. That is what I did and I saw great improvement. Keep in touch with your doctors about any troubling symptoms you have too. Good luck!

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It is a terrible thing that so many of us get so sick before we get diagnosed.  It takes awhile to learn the diet and it takes awhile to heal.  Some of that anxiousness might go away gluten free.  Try to be patient.  This will take time.  I was very sick and it took me a long time and effort to get better.  It was well worth it.

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This sounds a lot like how I felt, especially the constant D with veggies, and the feeling of fullness. It ended up being lymphocytic colitis, and your GI might not be aware that it's more common in those with celiac disease than the rest of the population. He/she might not consider testing you for it, because it's "rare". Unfortunately it takes a colonoscopy and biopsy to confirm, but I can attest that Entocort can alleviate the symptoms almost immediately. Don't give up! Keep fighting for answers! You don't need to feel this way!

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    • Hey Matt  thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous!  The fatigue is something I imagine every coeliac suffers with! I have to nap a lot.  Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely)  when I drink at home I'm fine!!!  I wonder if it's cross contamination from the bar or the level of alcohol?!  I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free)  it's a hard live but someone's got to do it!!  Thanks for the reply!  When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap?  Kind regards  steph 
    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
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