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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About CanadianK

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  1. Thanks for all your replies. It's been a topsy turvy week as I dealt with this disappointment, but I've come out the other side and I'm feeling ok with it all. Ultimately I know what I need to do. I realized I was also feeling challenged by certain family members doubting me and I just wanted proof/dr's approval to show this one person… I think I need to work through some "stuff" !! lol! I have lymphocytic colitis and I'm lactose intolerant which this GI found and diagnosed (so it wasn't ALL for nothing). The diet for LC is to stop grains, dairy, casein, etc. so I've been doing that and feeling tons better. The "gluten migraine" I get is flaring up less which means I'm avoiding even small amounts so I'll just keep trekking on. A I have an appt this week with the GI. I'm going to ask her where things went wrong. @Dania You might be right that it's the lab… I had researched which labs run which tests and chose accordingly. But from what you described and the tests your lab ran it sounds very similar to the results I received. It's times like these that I wish we had more power and transparency in our medical system.
  2. Thx nvsmom. I had done that but really couldn't find what I was looking for. I'll keep sleuthing
  3. In June I went to a Naturopath for all my gut/mental health issues and she ran a celiac test. The DGP IgA came back as almost positive. In the "normal" range, but where .9 was the positive, mine was .8. I had been gluten light for 2 years. So I decided I wanted definite answers. Went to my GP, got into a GI Specialist, and started the ball rolling. Colonoscopy done, as well as blood work for lactose intolerence. She recommended the celiac test (before I even mentioned that I wanted one) and she advised me doing a 10 week gluten challenge. I wanted answers so I did it. 10 weeks of feeling awful, more fights with my husband than we'd had in years, bloating, D, pain, joint pain, debilitating migraines... I'm sure you all know what I'm talking about. And during that time I read a TON about celiac. Visited these forums, learned, listened to podcasts and got myself up to speed about everything. Before the endoscopy I checked with the Dr. that the celiac panel she'd ordered for me to do after the endoscopy included all the tests this forum suggested. TTG IgA/IgG, DGP IgA/IgG, EMA, (the total serum had been done before and was within range). I requested 6-8 biopsies. She complied and said YES to everything, and assured me all my requests would be met... I felt so good and validated with her... Today I finally got my results and it turns out she only took 3 biopsies, and the blood work "Celiac Panel" she requested only tested my TTG IgA and DGP IgG!!! Both came back negative. I really wanted to see if my DGP IgA level went up since that one was so close to being positive gluten light... I am feeling so annoyed/betrayed/hopeless... I've now been off gluten (and dairy, grains and eggs) for 5 weeks now (since I thought I had allll my bases covered). I am 10 times better and I was really looking forward to having some closure with this. It's been years and years of not being well... I just feel a total sense of powerlessness in this. I advocated for myself so clearly and felt so proud of myself for finally putting forward my demands but the Dr had another agenda and didn't honour my requests for MY body. Argh. I won't do another gluten challenge. I just wanted some answers. Even if they were positive or negative. But I feel now that things weren't done properly I'm right back to where I started before I took on the gluten challenge. It feels like all that pain and mental health disruption was for nothing.
  4. I've been on the Specific Carbohydrate Diet for a few weeks now and I'm seeing great progress. Perhaps he has other deficiencies or adrenal fatigue… I've been enjoying reading and learning from this site lately http://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/#more-3490
  5. Thanks for your reply @nvsmom. All of this is so fascinating for me and I feel like I can't get clear information. My Dr is hesitate to call anything, anything! In fact, she felt perfectly fine to put my 4 year old on reflux meds indefinitely rather than "disrupt the family with diet changes" Um, WHAT?! I politely declined and so now I'm taking it all into my own hands. Over the past 2 years I've been listening and learning about my body's responses to food, and figuring out what the heck is wrong with me, but now to throw my daughter into the mix feels even more urgent - I need to figure all of this out. I just wish there was consensus within the medical community about all of this. Or at least some transparency… Anways, out loud thinking Anyone else have input about DGP IgA's role within our bodies?
  6. I've been thinking about all these tests and what they represent, etc. as I've been waiting for my results. I was just under the cut off for the DGP IgA test .8 where .9 is a weak positive (however I had been gluten lite for years). I've now done my gluten challenge, biopsies and needle pokes (with papers in hand from this group about all the blood tests and biopsy amts, etc. I was armed!). It feels like the end is near and I will have a full picture of "me". But I've been wondering. What causes your DGP IgA to go up and down? Would it be accurate to say that someone who isn't celiac would have a Zero for DGP IgA? Is it something that is just automatically formed in our bodies and sits dormant but builds over time *if* you're celiac? If it's an immune response to gluten, and a person has a low number of DGP IgA but "normal" doesn't that mean their body is making *some* antibodies and should avoid gluten (since I've read over and over again how specific this test is for gluten/celiac). I would love to hear some perspectives on this just for my own edification.
  7. THANK YOU!! I called the lab and they keep kids blood for a month! I'm in the process of calling my Dr. to get her to add it in. I can't thank you enough!!
  8. Hi all I was here awhile ago asking about blood tests and my daughters anxiety, etc. Anyways, I finally got her blood test done and the Dr called with the results but then said, there are no celiac results, but her IGA is fine. What?!? Turns out my dr. didn't specify on the form that she wanted the celiac panel, instead she just wrote IgA. I'm annoyed and feeling so stupid with myself. I just went through this with myself and requested all the tests, but it felt like I had to work to convince my dr. to request the test for my daughter, that when she wrote out the requisition I didn't go over it and I didn't request all the tests I had asked for myself. I'm so disheartened. It took all my daughter's courage to get it done and in my haste I dropped the ball… Of the tests she did get done: Ferritin 26.8 (range 30.7-177) Hemoglobin 129 (range 120-160) White Blood Cell Count 3.7 (range 4-10) Her B12, sugar, kidney, thyroid and all of that is fine and normal. She's exhausted all the time and pale with dark circles under her eyes when she eats gluten (as well as the tummy aches, headaches, etc) She's continuing to eat gluten and we've been referred to a Peds GI. Anyone have input about what the appt at the GI will be like? How to they usually handle things with children? Thanks for listening. I'm beating myself up over here…
  9. I just wanted to follow up here and add some info I was given. Just to preface this, my total IgA count is within normal ranges. And when my tests were done I had been gluten light for the past 2 years. I contacted the lab that did these tests and enquired about the kinds of tests these were since someone had commented about the reliability of the tests I was given (seems that post was removed though?) Anyways, the lab wrote back and said: "The gliadin IgA test that we employ is a deamidated gliadin peptide test. Both the Deamidated Gliadin IgA and Transglutaminase IgA are the recommended screening tests for Celiac Disease, which should be done after eating gluten containing foods. The Gluten/gliadin IgG test is meant for assessing reactivity to the native gluten...as this test is designed for assessing sensitivity to the entire gluten molecule (which contains the gliadin in it). This test is meant more for non-celiac gluten sensitivity rather than Celiac disease. I hope this information is helpful." I appreciated their response and in all honesty I didn't pay any attention to the Anti-Gliadin IgA only the TtG IgA. But that I look at how close my numbers are on the Anti-Gliadin (0.8 with 0.91 being an "equivocal") I'm wondering what that means… I kind of understand what the lab explained but if anyone else can add info that would be great. I have just completed a 9 week gluten challenge and did another blood test and endoscopy with 8 biopsies so now I'm just waiting for more definitive results. 3 weeks to wait…
  10. Thank you -- sleep was exactly what I needed. I woke up this morning realizing I was already on my way to being dairy free because since Jan I have been swapping out cow milk for almond or coconut milk. I do love my specialty cheeses but I'd rather feel good. Yogurt will be tough. Although I've been making my own and apparently after I've healed for a bit I may be able to introduce that again.. or make it with goat milk or one of the nut milks. I'm on day 1 of the SCD and feeling good - tired, but good and ready to HEAL! The Dr. called last night as well saying my fecal sample showed a parasite so now I'll do 10 days of AB. I've avoided AB for 10 years now but I'm willing to take these to help kick this thing out and get some good healing results. Any suggestions for a probiotic? How many a day and for how many days?
  11. I just completed a 9 week gluten challenge today and did my endoscopy as well as the celiac serology panel (had 8 biopsies taken as well as all the blood work recommended by the many fabulous ppl on here!) I had a colonoscopy done a few months ago, and copious amounts of blood taken. I'm feeling overwhelmed and weepy after all of this. I think it's a mix of FINALLY being done the gluten challenge as well as the meds for the endoscopy and some of the results I was given... Here is the info I was given today: Low B12 Low Iron GERD Gastritis Severely lactose intolerant (was NOT expecting that!) My colonoscopy showed that I have: Lymphocytic Colitis Now I wait for the rest of the results for celiac. After being gluten light for 2 years, then doing the challenge for 9 weeks I know I will be gluten-free no matter what the test results. It was not a good 9 weeks for me. I'm trying to process what food will look like for me now… gluten-free, lactose free, and I'm allergic to eggs… I would love any support, advice, etc.
  12. Yes it is the same. Mine was called Lymphocytic Microscopic Colitis. There are two kinds: Collagenous and Lymphocytic (or others I'm not aware of?) LC is more closely related to celiac disease
  13. I am just about to undergo the endoscopy to test for celiac since I was diagnosed with Lymphocytic Colitis and my GI said the LC is usually a symptom of a larger issue -- and closely related to celiac. She does not want to treat the LC until we know the celiac results because she said treating the celiac (gluten-free diet) will help the LC. I'm not entirely sure which comes first, but my GI said she would really like to avoid steroids and if we can control it through diet that would be her preference… so perhaps looking at diet would help avoid the steroids. I will be starting the Specific Carbohydrate Diet after my testing is done. I had great success on it before and am really looking forward to feeling well again (currently on gluten challenge :/)
  14. I'm genuinely curious here if there are long term negatives to NOT doing the testing on my daughter. I am in the process of celiac testing for myself after my initial blood work showed Non-Celiac Gluten Intolerance and just under the cut-off for celiac. I had been eating gluten light for 2+ years. So I'm currently on the gluten challenge and then doing all the blood work, biopsies, etc. My daughter who is 6 has been on and off gluten for years since I noticed cutting it out really helped her with her painful belching, belly aches, dark circles under her eyes, and daily headaches. I haven't been consistent though and the past 2 mths she's been eating gluten with me on the challenge while I decide what to do. I wrote a post yesterday about helping her get blood work done and her anxiety around that. I'm going to assume she will do what she does at most medical appts/new experiences….stand at the door threshold with her toes just before it and become a statue that I then have to carry into the establishment with her kicking and screaming, fighting and punching me. It's like her "flight drive" is locked in gear. It's intense, and scary for both of us, and just a very hard situation. We've been going to therapy for this, etc. But she is genuinely afraid and no amount of coaxing/bribing, preparing beforehand, talking about things, etc helps her… In actuality going OFF gluten helps her with coping and she is less anxious, and more easy going. I've done a ton of reading on this and definitely think there's a correlation (SC Diet will be our go to diet after all this) ANYWAYS! Tough stuff. So - with that in mind... If I know being gluten free helps her and it is very obvious to me, why would I do the invasive procedures that I know will be emotionally tough for all of us? (and yes I do consider blood work an invasive procedure) Is there really a medical reason that I need to know her blood numbers? If she has an endoscopy they may not find any damage yet so what information would this give me -- I don't foresee myself doing regular endoscopies anyways, the one would be enough for me. Does it really matter if she's Celiac vs. Gluten Intolerant in terms of how we deal with this? We are in Canada so diagnosis won't affect benefits, taxes, etc. And we homeschool so I don't need forms for school. Thank you all for your replies. You all have given so much and I have learned tons in the short time I've been on
  15. I actually can't find the info as to whether or not this was the "deamidated* gliadin test. The test calls it an "Allergy IgG - Gluten (Gliadin)". It may be the old one, which is why I'm doing further testing… Again, I was gluten light for almost 2 years when these tests were done. I also had the Anti-Gliadin IgA which was just under negative. The lab also noted in regards to my tTg IgA (which was just under negative): "A negative result indicates that patient does not have elevated levels of IgA to tTG. It does not preclude a possibility of a negative result due to selected IgA deficiency or gluten deficient diet. If Clinical Symptoms are ongoing and consistent with those observed for celiac disease, it may be of value to test for IgG to gliadin (if patient is not on gluten deficient diet)" Again, not sure if this is helpful. Can you look up the tests online and see how they're interpreted at your lab? There isn't much info in the lab I used, but maybe at yours?