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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

Kat L

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  1. I would be A-OK if I only had a problem with lactose and not with casein (e.g., could eat aged cheeses but not fresh milk or ice cream). I actually randomly came across some articles while browsing Wikipedia that say that the peptides that result from digestion of casein and gluten proteins actually have an opioid effect on the brain (see wiki articles on casomprohins and opioid peptides). It makes perfect sense that I am truly a cheese junkie...just jonesing for a cheddar fix...
  2. Thanks so much for all of the info and for sharing your own symptoms. I'm actually really surprised that so many things can potentially cause villous atrophy other than celiac, but it makes sense. Since it's so common for people to have similar reactions to gluten, dairy, and soy it's probably best if I avoid it all. I think will do a little bit more testing/challenges to see if I can narrow down what kind of reactions I have to dairy and soy, to see if I can tolerate it every so often (cheese, especially). Now, I just need to figure out how I can work 10+ hours/day, have a life, and never eat any processed foods... Btw, I have not actually been diagnosed with celiac. I had negative blood tests and biopsy results (6 locations), though I did test positive for the gene and have had some pretty bad vitamin levels. So, I could just be very sensitive/intolerant to gluten, or have had false negatives. Either way, I treat it as celiac to be safe and because my reactions are very severe.
  3. I've been off of gluten since December 2012, and have been experimenting with dairy-free for the last month and a half. I went off of dairy because I kept getting gluteny-reactions despite being VERY careful and really not taking any risks. Since being off of dairy, I haven't had any of my hyper-sensitive gluten reactions. I have done 2 dairy challenges (both social situations where it was much easier just to do a dairy challenge rather than explain I may not be able to eat dairy either...) and I didn't have any specific reaction to the dairy except maybe for some increased joint pain and stiffness, particularly in my hands. (Hard for me to discern because on one challenge I had used an electric sander for several hours the same day and on the other challenge occasion I had driven about 350 miles that day with my usual death-grip on the steering wheel). Does anyone else have similar experiences where eating dairy makes one more sensitive to gluten? Do you have any reactions other than stomach reactions to dairy? Thanks!
  4. I'm looking for some good storage containers to keep the various gluten-free flours organized. The POP containers from OXO seem pretty good, but they're pretty pricey: http://www.oxo.com/p-1144-5-piece-steel-pop-container-set.aspx I was thinking of using chalkboard re-writable labels to label them and keep them straight, although I'd kind of like to keep the original package label with them as well... Has anyone come up with a better/cheaper solution to the problem of too many flours? Thanks!
  5. I just got my HLA-DQ typing results back, and I'm not entirely sure how to interpret them. I know that I'm positive for HLA-DQ8 and therefore am genetically predisposed to the potentially developing celiac. But, what I want to know is if there's anything else that can be gleaned from the results, including whether I have 1 or 2 copies of the genes? My dad's had a number of the same symptoms as I have for many years and is on the verge of trying gluten-free. If I was able to tell him that I have 2 copies of the gene and therefore he has at least 1 himself, it might push him over the edge into actually giving it a shot. My results: Hla-Dq2: Negative Hla-Dq8: Positive Hla-Dqa1: 3 Hla-Dqb1: 301 Hla-Dqb1: 302 Typing performed by PCR and hybridization with sequence specific oligonucleotide probes (SSO). Interpretation: The patient has one of the HLA-DQ variants associated with celiac disease. More than 97% of celiac disease patients carry either HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302) or both. However, 39% of the general U.S. population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or DQ8 or both variants is not per se diagnostic of celiac disease. Background on me - I had negative IgA tests and endoscopy (while eating gluten), but also had low vitamin B12 and D3 results. My symptoms are definitely consistent with celiac and have improved IMMENSELY while being gluten-free (3 months and counting). When I have accidentally had gluten (once in ibuprofen pills and once in an Odwalla juice drink) I've had a severe reaction that lasted 3+ days, which was the same reaction as when I purposefully ate pizza to test it. So regardless of the test results, I'm operating under the assumption that I have celiac...and happy for it.
  6. Yes, there was wheat grass, barley grass, and wheat sprouts in the Odwalla. Like I said, it was a bonehead thing not to check.
  7. I got my biopsy results the other day, and they were normal (6 samples, normal). Other than a mild Schatzki ring and sliding hiatal hernia, the doc said everything was normal and nothing would explain any symptom other than a little heartburn. I, however, am not convinced. I've stopped eating gluten and will give it a month or two, and see how many of my symptoms resolve. I also plan on getting a 2nd opinion from another GI. But, at the same time, I'm concerned that if the GI is right and I don't have celiac, that I could be missing the real source of my problems. So, I have 2 questions: 1) Is there anything else that can cause B12 deficiency? As far as I know, there's not eating meat or dairy (which is definitely not the case for me), Grave's disease (I'm overweight, not under weight so I don't think hyperactive thyroid is my deal), and pernicious anemia/lack of intrinsic factor (my primary has ordered a test for intrinsic factor in February along with follow-up B12, so we'll see if that's the case pretty soon). Is there anything else that's a possible cause? My B12 was at about 300, and that's with me periodically (not routinely at all) taking a B-complex vitamin supplement. 2) When you get glutened, generally how long is the delay between eating gluten and a reaction? I've been gluten free for 8 days so far. I haven't had my most common symptom, which is really extreme bloating, all week - that is until last night after dinner when I blew up like the staypuff marsmallow girl. I went through everything I ate all day yesterday and I'm sure I didn't any gluten. Then I realized that the day before I did totally gluten myself. I had one of those green Superfood Odwallas for breakfast and didn't check the label at all- like a total bonehead, I thought it's just juice! no gluten to worry about. BUT, that was about 36 hours before I got the bloating. So, is it possible that the Odwalla caused my bloating? Or is this all a coincidence? Either way I'm going to stay off gluten and in another week or so purposely test myself with something gluteny.
  8. Yes, my doc did give me a printout of some scope pictures. There's nothing in these pictures that looks like you describe, though the copies I have are black and white. I'll get the full report after the biopsy results are in. To have EE, wouldn't I also have elevated levels of eosinophils in my blood? The results of a blood test from October show that I had 2% eosinophil (relative) and an absolute concentration of 0.3 K/uL.
  9. I had my EGD today and it'll be about a week before I get the biopsy results back. But, the doc did give me her observations. Apparently I have a sliding hiatal hernia and a Schatzki ring (mild, non-obstructing) - and everything else looked normal. I haven't been able to really talk to my doc about it yet, because I was pretty out of it and didn't have such a great reaction to the sedation. From what I've gathered reading on my own today, it doesn't seem like either of these are a big concern right now, but should be watched to make sure they don't get worse. I wonder if the hernia could have been caused by my constant severe bloating. I have often noticed that after a big meal, particularly when I'm with other people and can't burp, that I have trouble breathing. Does anyone have any experience with either a hiatal hernia or a Schatzki ring?
  10. Thanks everyone! I contacted my doctor's office and they confirmed that she will only be doing an upper GI and that the MoviPrep was completely in error. I also asked them to double-check the scheduling with the surgecenter and what they've sent to my insurance company. My endoscopy isn't scheduled until December 28th, so they should be able to get it figured out by then. Though, this kind of thing does nothing to booster my confidence in this doctor or office... Nothing worse than a surprise colonoscopy!
  11. When I called to schedule my endoscopy with my doctor's scheduling nurse, she asked me whether I wanted movie prep or something else. I didn't know what she was talking about and the doc hadn't mentioned anything like this to me. I had to check on something with my insurance before scheduling the procedure. When I called back later that afternoon she said that she checked with the doc and I didn't need movie prep or the like. Almost a week later, I got a call from my pharmacy saying a Rx was ready and when I went to pick it up, it was MoviPrep - a mega-laxative to prepare you for a colonoscopy. I didn't accept the giant box-o-laxative and told the pharmacist I had to check with the doc first. The instructions and brochure they gave me about the endoscopy didn't say anything about a laxative and I think this a mistake. I plan on calling tomorrow to ask...but at the moment I'm a little confused and am beginning to lose confidence in this doc, or at least her office... Has anyone else had to do a mega-laxative before an upper GI endoscopy? Or is this likely a mistake?
  12. Ruby - I'm a very similar situation to you right now. I'm fairly sure at this point that I have a gluten problem (though, the blood tests I had were negative) and I'm counting down the days until my endoscopy (39 long bloaty days to go). I also put together a bucket list of my favorite gluteny foods, partially to have them one last time and partially to feel like I have some kind of control over the situation. Right now, I am not eating gluten at breakfast or lunch, but making sure to eat it for dinner everyday. That way I pay close attention to what I eat and how it makes me feel. Also, I have less of the brain fog and other distracting symptoms during the day when I need to focus at work. I've found that when I have something I really love and was certain I was going to miss (like jalepeno cheddar bagels) and then feel terrible after eating them, I feel much better about the idea of giving them up. Plus,since I'm only eating gluten one meal/day it's much easier to observe the type of reaction I have to them. You're definitely not alone. Just keep thinking about the light at the end of the tunnel, where you get to start healing and those symptoms start slipping away...
  13. I hadn't realized that the B12 range was so much broader than it should be. I figured that it was likely, and really most vitamin results near the bottom of the "normal" ranges are generally suspect. Re: thyroid disease, I've actually had my thyroid levels checked every year for the past 6 years (at my annual gyno exam and every time a doc tries to figure out what's wrong with me). This is because, as the story goes, my mom had a lump on her thyroid removed when she was in her 20s. According to my dad it was just a lump, found not to be malignant, and they didn't know what it was but they took it out along with half of her thyroid and then she took syn-thyroid for the rest of her life. So, with that in mind, my thyroid hormones are always and thus far have always been normal. My last TSH result from a little over a month ago was 2.50 uIU/mL. Re: parathyroid, the parathyroid regulates calcium levels in the blood, and vit D aids in absorption of calcium by the intestines. So, if one's parathyroid is overactive (usually as a result of a tumor) then blood calcium levels in the blood are too high, being leached from the bones, and the body suppresses vitamin D production. So, after I had the vitamin D-deficient result, I went to an endocrinologist. Apparently, the parathyroid glands are still a bit of a mystery to many doctors (much like celiac) and in the early 1970s I'm sure doctors were even less knowledgeable. And like celiac, hyper-parathyroidism is also still an underdiagnosed disease. So, my working theory at the time was that perhaps the mystery lump on my mom's thyroid was actually a parathyroid tumor. (People typically have 4 glands, sometimes more, and their locations can vary quite a bit, including being inside the thyroid entirely). This was particularly concerning as thyroid tumors, which cause hyperactive thyroid but are not cancerous can be a result of multiple endocrine neoplasia, a disorder that also can cause stomach cancer. And...my mother died of stomach cancer when she was 45. So, I asked the endocrinologist to check my parathyroid hormone levels and she also did an ultrasound of my thyroid/parathyroid. All was normal. I've had broad autoimmune-like symptoms for many years and at several times, doctors have strongly suspected that I had an autoimmune disease but were never able to diagnose it. None of them had ever suggested celiac to me. The first time I went through this I was in college. Repeated blood tests showed I had elevated sedimentation rates, despite being otherwise, outwardly not sick. After months of repeated elevated sed rates and no positive results for the standard autoimmune diseases, I gave up and stopped going back to the doctor. At that time, I actually had had a surgical steel screw in my foot, and since shortly after I had it put in I became allergic to all of my earings, I figured that I had developed a metal allergy of some sort. This is pretty consistent with the latex allergy I have, which is not an actual latex allergy but rather a sensitivity to the hardeners in latex products - common in people who have had surgery as a baby. I figure I'm just predisposed to developing sensitivities to foreign objects/chemicals in my body. A few years ago, I had an orbital myositis in my right eye. Basically, one of the muscles that moves the eye swelled to 3-4 times the size it normally was and was INCREDIBLY painful. It took a few weeks to diagnose properly, but fortunately I was able to see a neuro-ophthalmologist, after having a complete meltdown on the phone with a nurse who squeezed me in right away instead of making me wait a month. According to the neuro-ophthamologist, orbital myositis can either be an autoimmune symptom or can be caused by a virus completely randomly setting up shop in a muscle. After 9 vials of blood being from my hand that day, because the lab couldn’t succeed in finding a vein in my harm….all those tests came back negative. About a month before the eye problem, I had a campylobacter infection (intestinal infection not dissimilar from salmonella – more common in Europe than the U.S. –WOO that was a fun vacation!). Wanting to make it back to the states by Christmas, I flew back home despite still having crippling intestinal umm…issues. Not exactly the smartest thing I’ve ever done, considering by the time I made it home I was so dehydrated I had chest pains. Also, in addition to the food poisoning, I picked up a nice plane-virus. When the autoimmune results came back negative, it was reasoned that the cold virus took up shop in my eyes, since I was probably pretty immune-compromised at the time. MSG – 12 years? Do you know what the relationship between gluten and MSG-sensitivity is? Beginning about 12 years ago, I started developing weeping rashes on my face and forearms from MSG. Sorry for rambling on about my various medical mysteries, but it's nice to type it all up in one place. Or - most if it in one place. I also have some physical birth defects that have their own set of doctor stories. One thing is for sure, I’ve seen A LOT of doctors over the years. Some of them very good and some of them quite terrible.
  14. I asked my doctor about the additional tests, and her response is basically that the tests I've already had have the highest specificity for celiac and therefore provide as much information as we're going to get. Her full response is below: All these tests exist and could be run, but I am not sure they would add much to where we already are in your diagnostic work up. You have had our standard celiac panel which includes the tissue transglutaminase iga and deaminated gliadin peptide antibody iga. In general, the iga is better than the igg. The igg tests are primarily used when an individual has low iga; low iga is a common variant in the population. Your total iga was already normal on the celiac panel so your iga tests are valid. In general, the deaminated gliadin peptide antibody is similar but better than the older aga. Here are some numbers about how good the tests are. You are going to want the most sensitive test (this is the one most likely to be positive when disease is present): IgA endomysial antibodies – sensitivity 85 to 98 percent; specificity 97 to 100 percent IgA tissue transglutaminase antibodies – sensitivity 90 to 98 percent; specificity 95 to 97 percent IgA antigliadin antibodies – sensitivity 80 to 90 percent; specificity 85 to 95 percent IgG antigliadin antibodies – sensitivity 75 to 85 percent; specificity 75 to 90 percent You can see the tissue transglutaminase is the most sensitive and you have had this one. You have also had the deaminated gliadin peptide antibody (better than the aga). I would like to send you a standard diagnostic algorithm and potentially even the whole article from a trusted medical source - I use UpToDate, for instance, it is like a textbook that is updated every few months. The article is by a leader in the celiac field and was updated in October. Shall I mail this to you or do you have a fax you prefer? Have other people experienced results where these less sensitive, less specific tests are positive but the three initial tests are negative? Also, when I asked her how many biopsies she typically does to screen for celiac, she said from 2 to 12 depending on the visual condition of the intestine. If I ask her to take at least 6, regardless of the visual, I doubt she'd have any problem with that. So, I think I'll schedule the endoscopy with her soon.
  15. CassP and Lisa, Thank you for the advice! I'll email my doc and ask about the additional tests and how many biopsies she'd do. I'll either be scheduling the endoscopy or finding another doc for a 2nd opinion. Here are my recent vitamin results. After I get the low vit D result, I saw an endocrinologist who ruled out parathyroid disease. Component Your Value Standard Range Units Date Vitamin B12 297 211 - 911 pg/mL October 2012 Folate 13.7 >5.4 ng/mL October 2012 VitD,25-Hydroxy Tot 71 30 - 100 ng/mL May 2012, after supplements VitD,25-Hydroxy Tot 12 30 - 100 ng/mL December 2011 Magnesium 2.0 1.8 - 2.4 mg/dL January 2012 I also have annual blood tests for work. I don't have those results handy, but I'm always on the low side for iron. I forget what if any of the other minerals skew low.