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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.

Do Gi Docs To Med School?
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Ok so I wrote earlier about my severe iron defienciency I was having and my need for a GI workup based on advice from the doctor at the hospital. I have not gone to the GI doctor yet but work as a nurse and saw a doctor that works with my GI doctor. I was talking to him and telling him about my previous EGD results (villous atrophy in duodenum and jejunum) with negative biopsies and blood samples. He asked if they checked my poop for blood in the hospital which they did and it was negative. Even though I have had symptoms of celiac before but I am now on a gluten FULL diet and have no diarrhea just constipation and mild cramping. He swears I must have some sort of GI bleed somewhere and there is no way I hAve a malabsorption issue because I have been tested for celiac, UC and crohns (although I still believe celiac could be my culprit) he even said himself maybe it's gluten intolerance you have but that wouldn't cause iron defienciency so it must be a bleed. Is this guy that uneducated??? I have no symptoms of an ulcer and I am already on prophylactic meds for that and my stool has no blood. If I am eating enough iron and not losing blood the only other option is malabsorption. I am so frustrated really hoping when I meet with my own doctor (who really isn't much better) he will listen to me more. Even my hematologist said I may just be one of those people that dont absorb and need infusions every once in a while for the rest of my life. So even she thinks its malabsorption!

Btw anyone here still not have resolution of anemia with gluten free diet and need iron supplements or infusions?

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I'm sorry, but.... I really just don't understand this, you say you have villous atrophy but you're back on a gluten FULL diet for testing, yet you're low on iron ?

Uh, no wonder. B Vitamin malabsorption causes anemia sometimes. You know, these doctors get paid for testing you, they don't get paid if you just eat gluten free for long enough, (and supplement,) to heal up.

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Okay, I agree that doctors are uneducated and ignorant, but a response with regard to that would take up several pages. Yes, I believe that you're suffering from malabsorption issues. Yes, I believe you probably have celiac. I wasn't able to absorb iron for a LONG time after going strictly gluten free. I had to get infusions whenever my numbers dropped, and it was only after I had to undergo chemotherapy that my gut finally healed so that I didn't need the infusions anymore. I've followed a very strict gluten-free diet since that time and definitely no longer need infusions or even oral supplements. I don't know if the damage to your villi will ever heal enough to allow you to stop infusions. I hope so, for your sake....

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I was told after my biopsy last year my biopsies were negative and told to eat gluten I went a few months gluten free then brought it back and have had no problems. Also I am only iron deficient not b12 or folate. I have now presenting a year later with severe iron deficiency my HGB was almost nine normal is 12-15 depending on gender

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Rosetapper,

Why did you have chemo? I am interested that you resolved with chemo. Because all my medical problems started after I did chemo. I even had one doctor tell me that the blunting was from my chemo, I was like ummmm what??? You obviously have no answer

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I had chemo for breast cancer six years ago. Before I underwent chemo, I contacted Dr. Peter Green at the University of Columbia to know what to expect (he's an expert on celiac disease and wrote the book "Celiac: A Hidden Epidemic"). I wanted to know if my celiac would worsen during the chemo. Surprisingly, he told me that I should expect an improvement in my celiac symptoms. He said that he did not know why this happens, but other celiacs had reported that some of their symptoms had actually improved while undergoing chemo. In my case, he was right. Perhaps it depends on what type of chemo a person has to take (??). I've never heard of chemo blunting villi....but who knows?

Is it possible that the chemo--or even the cancer and your feelings about it--could have triggered your celiac in the first place? Were you diagnosed BEFORE or AFTER undergoing chemo? One thing that Dr. Green stressed is that, while undergoing chemo, I should be VERY careful not to eat gluten. He said that it could do a great deal of damage while I was undergoing my chemo treatments. Perhaps that happened to you?

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I have not been officially diagnosed yet, my primary and OB/GYB and the hospital doctor think I have it but because my labs and biopsies were normal although after the test the GI said your intestines look like that if a celiac patient. I do believe my cancer was my "trigger" of whatever is going on with my stomach because I had no problems before and now for about 6 months out of the year I have nearly controllable diarrhea then about six moths of constipation, the diarrhea got so bad I had to get FMLA at work

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I would strongly recommend that you go strictly gluten free to see if your health issues resolve. Because you only just developed symptoms, it could be that there was not enough damage to detect with an endoscopy. Also, the damage could exist farther in than the length of the scope. Therefore, since two doctors are suspicious that you might have celiac, I'd definitely go gluten free if I were you. You don't want to mess around with cancer! If you do, in fact, have celiac (or even gluten sensitivity), your immune system will not settle down until you stop eating gluten. Otherwise, your immune system could continue to be activated...and that could mean the return of your cancer. My oncologist discovered that so many of his patients had celiac, he routinely tests new patients for it. He agrees that, as long as the primary auto-immune disease is not being treated, the cancer will thrive.

I was glutened accidentally last February, and two months later my cancer metastasized to my lymphatic system. My oncologist and I believe that the complete collapse of my immune system because of the glutening caused the cancer to advance.

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It's interesting you comment on the immune system, because since treatment I have developed thyroid issues, clotting problems and inappropriate sinus tachycardia, all believed to be either auto immune or an autonomic dysfunction. I get another EGD soon and I am curious what it will show. Even if the biopsies are negative again if the damage is worse I am taking that as a diagnosis

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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
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