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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About MargoS

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  1. I know when I've been glutened. I get a severe pain in my GI tract- it usually starts about 40 minutes to an hour after eating, and begins underneath my breast bone and radiates all over. It feels like I ate a bunch of glass. It hurts. It then moves lower into my stomach, upper and lower intestines, with a dull, but presistent radiating pain, I feel bloated and very unwell. I then have copious, frequent large, pale (almost yellow) stinky stoools for days afterwards. I notice that it takes about 7 full days before I feel back to normal again. I think the pain in the intestines makes me feel generally maliase (and depressed- that I've been glutened again!!!) and will I ever be free of this. Its mostly hidden gluten in sauces that I forgot to be vigilant about when eating out. Once I was also made a gluten free sandwhich from a yoga retreat that were very sensitive to gluten-free diets. I ate the sandwhich and commented on how darn GOOD the bread was-it was like "real bread." One half hour later I was in severe pain. I went back the next day to inquire, and yes, they gave me regular bread. I blamed myself for trusting them-and not triple checking. And if its too good to be true- it probably isn't gluten-free bread! I also have been tested for IgG food allergies and was told I was allergic to almost everything. But, I don't seem to have any symptoms after eating non-wheat/gluten things...I wonder- does anyone test positive for food intolerences (besides gluten) and yet have no symptoms? I wonder if its just my leaky gut letting food in my bloodstream, and my body building antigens to them-and yet I have no symptoms. Only to Gluten...?????
  2. Hi a1956chill, It's so nice to hear from a fellow/former vegan. It must have been tough for you. My husband said last night that he would understand if I needed to start eating meat again. I told him I think I can do it with seafood. We'll see....I am so thankful salmon was okay (the lowest on my list) as its such a healthy protein. I am just worried I will overdo it if that is all I eat... So what happens to you when you eat rice? That is the one grain I just don't want to go without. (I will, if I hav too....). For me, I'm not really getting any symptoms from rice or the majority of other foods listed as "allergic"- wheat/gluten, and I suspect all other grains are ad-and I think (boo hoo) corn as well. Thanks for your help and encouragement!
  3. Eatmeat4good, That's amazing. I was thinking I would go down that road. Tough for me, being vegetarian (pesco/lacto/ovo)-so looks like I will be eating a lot of seafood. It's really amazing to me that certain foods are safe havens, and that meats are one of them. What does that say about human evolution and adapation? Thanks for your help.
  4. Hi sb2178, Thanks- sounds like good suggestions. I actually don't think that I react to many of the foods listed-including fruits and veggies. Maybe I am just not noticing things yet? The only for sure, absolute reactions are wheat/gluten; and I suspect all other grains (except rice, I think is okay). Corn is suspect. If I don't have reactions, do you think that because I have leaky gut, anything getting through into my bloodstream is causing IgG to build up? Nevertheless, I will stop all the high allergens for now and rotate the lowest...thanks for your advice.
  5. Hi Cypressmyst, My doctor suggested getting tested for the same things- parasites, bacterial overgrowth, yeast, etc. We'll get results back in a few weeks. Half of me hopes its one of those things so we "know" what is causing this and can treat it. The other half of me dreads any more bad news..."You now have this!" and have to treat it with antibiotics, etc. My doc is a Naturopath so she already mentioned some herbal treatments. She said it depends on how bad it is (if it is positive for one of these things) whether we can use natural herbal remedies or go for aggressive antibiotics. For you-when did you find out and how long of a treatment have you been/will you be on? What are your 15 good foods? Good luck and keep me posted!
  6. Thanks Jstric, Thanks for the suggestion on Sunbutter-I will try some. Its good to know there is a way around this. Cheers!
  7. Just when I thought I was getting the hang of being gluten free, my nautropath got results from BioTek's ELISA IgG food testing for some 100 foods. It broke my heart when she came in and announced that I had "major digestive problems." I'm a vegetarian, but now I have no idea of what to eat. Listed as very high reacting foods, includes virtually all fruits and vegetables (except for strawberry, blueberry and plum for fruits; and beet, garlic, mushroom and spinach for vegetatbles). All forms of dairy were high. Corn, of course all wheats and glutens high. Only safe nuts for me are sunflower and peanut and soy was marginal. Grains are all high except for amaranth. Eggs were very high. Sugar high. Yeast very high. For goodness sakes- the only things that were low were meats and seafoods! The vegetables kill me. That's what I eat most of. Am I just suppose to eat salmon the rest of my life? (It was THE lowest allergen tested). This must be leaky gut, and I must have to go on a rottation diet. But my goodness. Anyone else out there have so many other intolerances? How to you handles it? How do you heal the leaky gut? Thanks for your help. I am really, really depressed by this...
  8. Hi All, I just got my DNA tests back. This stuff is so confusing to interpret! Anyone of the well-versed board members able to help answer this? Here are the results: HLA-DQ2 (DQA1*05/DQB1*02) Positive HLA-DQ8 (DQA1*03/DQB1*0302) Negative HLA-DQA1* 02 HLA-DQA1* 05 HLA-DQB1* 0201 HLA-DQB1* 0202 Am I right to say that my "type" is DQ2.5/DQ2.2? If that is so, having two of the DQ2 markers- I have read, puts those people at a higher risk for celiac disease (which I already have) - AS WELL as sensitivity to oats? Anyone else out there with this typing that know they are sensitive to oats? Thanks!
  9. Hi All, First- THANKS to all who post and answer on this incredible forum! Second- HELP please with interpreting DNA results. My Quest lab results just came in, "typing by PCR and hybridization with sequence specific oligonucleotide probes (sso)." It states: HLA-DQ2 (DQA1*05/DQB1*02) Positive HLA-DQ8 (DQA1*03/DQB1*0302) Negative HLA-DQA1* 02 HLA-DQA1* 05 HLA-DQB1* 0201 HLA-DQB1* 0202 The lab report concludes I am positive for "one of the variants of HLA-DQ associated with celiac disease" but aren't there more than just the HLA-DQ2 and HLA-DQ8? Also- does it look like I have two varients of HLA-DQ2?????? How do I figure out what the serological equivalent is, and the subtype (x,x) is? Do I have a homozygous or heterozygous genetic expression here? (Both parents, or one parent carried the genes for celiac disease?) I'm so confused..... My sister said she tested positive for two. I'm trying to get her lad report too to compare. Thanks to the experts who have posted in the past on genetic results. I searched the forum and didn't quite see this one posted, so thanks in advance for your help!
  10. Hi all- I just got my results back and it was done (or reported by) Quest. I don't have the official report yet- just the doctor's lab report, but mine said the following: HLA-DQ2 (DQA1*05/DQB1*02) Positive HLA-DQ8 (DQA1*03/DQB1*0302) Negative HLA-DQA1* 02 HLA-DQA1* 05 HLA-DQB1* 0201 HLA-DQB1* 0202 ------------------------------------------ Question-and help!: Which type of testing was this (serological?) - and could other labs do more "typing" or present more information? It looks like they tested for just the DQ2/DQ8- or did they do more (what are the 4 sets underneath the positive/negative lines)? Do I need to know more (like if they only look for HLA-DQ2 and HLA-DQ8, and one is negative, could there be one of the others - or is this all I need to know?) Does anyone know where we can learn more about interpreting these test results? For instance, people with homozygous vs. hetrozygous sets of these "phenotypes" may put some at higher risks for refractory celiac disease and for lymphoma. Thanks so much for your insight to this!
  11. Foot Pain, Anyone?

    Yes-me too! I actually think this is significant and glad you brought it up (but sorry about your pain!) For me, I had a bout of very bad food poisoning in November, followed almost immediately by painful metatarsalagia in my right foot. The pain in the foot started a week after being sick, after walking about a mile in high-heeled boots on cold pavement in DC. I went to a podiatrist and he said my feet were "normal" and it was essentialy a stress injury, and should heal in a few weeks. That took nearly 5 months. That is not normal for a healthy, active 40 year old. Anyway, I thought there might be a correlation. Fast forward to Jan, when I had a severe reaction to eating a gluten-loaded dinner. I had never heard of Celiac, but went to the doctor, requested the tests, and it came back positive. My foot still hurt. I went for nutriotional counseling, and mentioned my foot. I was almost embarresed to bring it up (was I turning into a hpochondriac, I thought people would think...). However, my nutrionist thought it was absoultely related. It's been explained to me this way: your body is not absourbing nutrients with celiac disease. You have an out-of-control inflammatory response running through your blood and tissues. In my case, I had very low Vitamin B-12, and it takes its toll on the outer nerves (hands and feet, first). A small injury will take longer for the body to heal. He recommended lots of fish oil, B-12 shots, and a good anti-inflammatory diet. It finally has healed. In the meantime though, I have "Blackberry thumb" of all things fromtexting. It has been months on that one as well. I decided to see a Naturopathic doctor. I was very impressed and mentioned this. She took it serious. Turns out, its too complicated for me to explain here, but there is a connection between what is going on in your gut and what is going on in your hands, feet, and other joints. Unfortunately, it may be another side effect of Celiac: Anyway-I wish more doctors were informed abour Celiac and the other symptoms and side effects of celiac disease. Its often on us to find multiple doctors who will listen, and understand what its all about. Good luck and hope your foot heals fast and you are on the mend!
  12. Dear Kate< I am newly diagnosed as well-just last week. I am 43, and I have been mostly asymptomatic my entire life, though looking back now, now I understand why I may have had bad heartburn and headaches all those years. I chalked it up to a hectic lifestyle and moved on...Until I got really ill after eating a big portion of wheat-meat (seiten) new year's eve and got violently ill. I think I am really lucky- I suspected a wheat allergy (not celiac disease) and asked my doc for a food allergy test. Syhe decided to screen for celiac disease too. I thought, "impossible." When the results came back, we were shocked- off the chart high antibodies on 4 tests. I have been struggeling with the same question as you. Should I get the endoscopy? I went to a digestive disease specialst and was so happy that the doctor basically said, there is a problem with diagnosing the disease because there are currently two gold standards - and there should only be one. The two are the positive serum tests, and the second is the confirmed damage by endoscopy. He said in my case, my serum levels were so high on all tests- there was no way it wasn't Celiac- and in fact, if I had the endoscopy and it missed sampling a damaged area or didn't show damage, we would both still believe I had celiac disease- so why go through all that? He was very philisophical/logical about it. He said with patients who may not believe it or need more convincing or motivation to stay on a strict gluten-free diet the rest of their lives, the endoscopy is important. Also, for cases where only some serum levels our high or there are mixed results- or maybe no antibodies yet- an endoscopy is good. Also, if they suspect a lot of damage, they may want to look and see. With me, it looked like it developed rapidly and I have not had a lot of gasterenterological symptoms, so he thought that I would not show much sihns of damage at all. He said however, that he would have no problem at all with giving me the diagnosis of celiac disease right now with no further testing, and to eat gluten-free the rest of my life. I agree and need no more motivation through testing to follow a strict gluten-free diet the rest of my life. Doubt will not creep back in for me (do I really have celiac disease, or can I have this slice of pizza???-Nope-I'm convinced based on my serum levels and family history- my Dad had all the signs of celiac disease and no one ever suspected it- and he died at age 57 from lymphoma, after lups, arthritis, gout, gallbladder, heart attack, etc.- all probably stemming from undiagnosed celiac disease) Its really a highly personal decision between you, your loved ones and your doctor. In your case, sounds like you already have the results you need- do you need more to know/convince you to eat gluten-free the rest of your life? If you have doubt- the endoscopy may help- but it comes after having to reintroduce gluten and perhaps cause health issues in the meantime...... Good luck to you! I'm also glad to hear your boyfriend is so supportive. I brought my hubby in to the digestive disease consultation and it was great that he could here the conversation first hand, not just my translation if I had gone alone. It will involve the whole family and your loved ones so its best to include them so they know how serious it is- but what an EXCELLENT prognosis you have if you follow a gluten-free diet. Hope this helps and keep on the forum! Cheers- Margo
  13. Mushroom and cassP- thanks again. The gluten free goddess website is excellent!!!! CassP- I'm curious- being all new to me, how does fructose effect your gluten sensitivity/celiac disease? The day I first got sick I ate a lot of grapes, then the seiten, and a cheese plate (with some red wine). All those things are now suspect for me - you know how you may have lingering food "suspects" but never really know? I long suspected dairy (and there is good reason to avoid that for at least 6-months), the sulfites in red wine....and maybe fructose? What is your reaction- and is it to processed forms or fresh fruit? I would bet that with the onset of celiac disease, the body is probably hypersensitive to a number of possible things....does anyone know a good book that recommends the MOST safe and easy to digest foods to help minimize any reactions and help the healing process??? Hope you are feeling better today! Thanks again-Margo
  14. Hi CaspP, Hope you are feeling better soon.... Well. I've been a vegetarian for 18 years....I loved all the "fake meat" products and ate a lot of them- Tofurkey, veggie burgers, fake sausage, and I loved the "wheat meat" I got at vegetarian oriental restaurants....I wanted to do a "mock" meat holiday dinner and this was the second time I did this dish. I NEVER suspected it could be so damaging. I used 4 cups of vital wheat gluten, kneading the dough, and then boiling it in a veggie made a mock Beef Bourgegion dish that was quite good....until I got deathly ill. I had no idea....vital wheat gluten is like 99% gluten, so if you have hidden Celiac, what better way to bring it out? It will be tough for me being a vegetarian- and really shouldn't eat diary either. I will NOT go vegan and plan to make salmon a and healthy fish a big part of my diet-but no chicken or beef for me, and no TVP (textured vegetable protein), veggie burgers, or "meat" replacements..... Again thanks for your comments- hope you feel better!
  15. Dear Mushroom- thanks so much for your advice. It seems like the lactose is especially a major contributor to my issues- and makes sense. I'll re-post results and follow-up with my doc - this valentines day! Cheers-Margo