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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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  1. THANK YOU guys for the helpful info – the WP sounds good, with no magnesium stearate, which gives me some problems. And there IS cornstarch in the Levothroid, so there’s another avenue to pursue. A non-prescription alternative to consider also! Will keep in mind that I may need less now. Mamaw, Prickly Pear, Stephanie, GFinDC (your boiling bowels scripture makes me smile every time), thanks for the recommendations. Gemini and Laura - I’d surely rather give up a pinky finger than my thyroid meds if I could help it. There are several situations where thyroid supplements can cause problems, with adrenal issues being the first that comes to mind. Doctors can be good collaborators, but I don’t substitute their judgment for my own (and I do have a “true thyroid condition”, with a TPO of 1196 and 19 years of steady doctor-supervised thyroid supplementation before veering off the standard path). I agree it’s important to monitor thyroid numbers and have the most possible information. Yes, non-functional is an accurate description, yet I did better overall when off the thyroid meds. My particular situation and diagnoses are unique and would take a lot of disheartening effort to relate, but I'm doing the best I can, as we all are. I’ve been without medical insurance, but hoping for some soon that could allow for more testing. If there’s a specific GI test you are recommending, let me know. Meanwhile, people here with similar intolerances seem to benefit by removing the foods. That could be very helpful to know that a celiac response is delayed, not immediate.
  2. Hi Guys! Has anyone had a strong reaction to Levothroid or another thyroid medication? I've been gluten-free now for two or three months and I seem to be very sensitive. Don't tolerate gluten-free oats, rice, corn, soy, dairy, nightshades, bananas, shrimp, yeasts, fermented foods and others I forget. So, I've been really incapacitated by all this (or that, who knows by now?) and had eventually narrowed my diet down sooooo far, just to avoid reactions but with no health improvements. THEN I made the gluten connection and that led to figuring out the other grains so now . . . there's some progress and have so much hope for improvement. Amazing-to-me is that I now have bangs on my forehead that were never there before - about three inches of hair growth in the front where it must have been bald for the past ten years or so. Now that's a problem I hadn't even known about until it grew back, but I LOOOOVE that visual evidence of healing. I don't feel so ravenously hungry all the time and now I eat my salad with a fork instead of with my hands like a starving refugee - I hope other things will keep getting better and better. (I had a negative blood test, but THAT dr would only order one most basic and I felt it was urgent to get off gluten without waiting for more tests) I only experienced diarrhea as a symptom in the last couple years, long after I was knocked far down by other issues with a body just not working. ( I have something that looks like possible D. H., so perhaps that is why? Still have lots more to learn of DH, but think I read it can have fewer digestive symptoms? hope to have it checked out later). After many many years on thyroid supplementation (autoimmune thyroid issues), I "knew" I needed to stop taking my thyroid medication, that it was making things worse. I couldn't explain it, but trusted my instinct (the doctors appreciated THAT!). In the past, I'd taken a lot, even 200mcg at the highest. I took myself off and it's been a year or two now. Now I really want to get back the benefits from thyroid supplementation and my bloodwork still shows the need for it. Most of all, I want to get some sleep. Yesterday for the first time I took Levothyroid (50mcg), a pretty small dose for me, then had immediate, ridiculous diarrhea after my dose, followed by a few later bouts and other pains / sensations in my stomach areas, like I would get from grains and stuff. I took another dose today with the same result, again most severe within a minute of taking it. Please, does anyone have insight into this reaction to the Levothroid? I would really appreciate it. I guess my post also turned into sort of an introduction, so HI! and I would dearly love to hear from those with a similar situation to mine, it'd be so good to hear experiences of coming back from all this, that it's worthwhile trying the 9,999th thing. Thank you Thank you ))))
  3. Just to update: When the GI doc reviewed my son's symptoms and test results yesterday, he said that neither pointed to celiac, in fact he is "certain" he does not have celiac (ex-husband trembled with glee that he'd have no inconvenience with dietary restrictions) and he would not waste an endoscopy in this case! This doctor said it would be too unusual for the EMA and TtG IgA to be negative. He also said that the TtG IgG was known for an extremely high false positive rate. He said in a study done at his center (unpublished), it was only about only 20% for specificity. I asked him how he would explain the 85-95% specificity in other studies and he said perhaps it was due to the population sampled, that they had such a high likelihood of being celiac to begin with instead of starting with healthy controls. I haven't had a chance to review the methods for those studies (much less info on this test as it's rarely used anyway), but maybe I will check it out later. Moving on....we have no official diagnosis but now to give a gluten free diet a good try! Intuitively, it sure feels like a relief for me not to give him gluten anymore. Hope the payoff will come soon. Meanwhile, it's very challenging because he cries from hunger even just after I fed him five courses. He asked today, "How long have I been eating?" and it had been over an hour, full-on eating, not stopping really. I'd like to keep him off all grains at first and challenge them later, but I can't afford to because he's feeling so hungry after I feed him every thing I possibly can. I recently switched to white rice from brown, but he says it makes him feel badly, "stopped up and tight", so I guess back to brown rice and oatmeal for starchy, please-god-fill-him-up carbs (he's always been fairly adverse to potatoes) Just so weird, that this white rice causes him more problems than wheat of all kinds and brown rice, neither of which cause immediately observable symptoms. I had read it would be easier to digest than brown rice. Anyone else experience something like this with rice?
  4. Thanks Nicole! super helpful again. Off to see the dr in the morning and see what happens.
  5. Ohhhhhh, thanks so much for that info! Incredibly helpful. His pediatrician ran the test results and thankfully she was willing to order every one I asked for. He will certainly be going gluten-free regardless of the biopsy results. Actually, it is almost physically painful for me to give him gluten at this point, but for various reasons, but it will take an official diagnosis to get my ex-husband to follow the dietary restrictions when they are together, so I am holding out for a doctor's degree and throwing a bagel his way every day. Our first consult with the specialist is Tuesday and I'm hoping the biopsy would be soon after, since it only took two weeks to get a new patient appointment? but if the dr. is willing to diagnose without biopsy, that'd be great, so a lot depends on the consult. All in all, I'm hopeful that dr will be helpful, but totally prepared to handle it if he's not. We get to see the dr who published the list of gluten foods (which I think I found through this website) so it's a good sign that he's knowledgeable overall. He WILL.... make up for a long string of doctorish disappointments, so long it stretches back to before my son's birth, but that's another story. No pressure or anything, doctor. You wrote: I know that for the tTG IgA tests, a weak positive can sometimes be caused by thyroidistis, diabetes, crohn's and colitis, liver disease, and severe infections; I don't know if that is the same for the tTG IgG tests though.... then: IgA is based in the mucosal linings, like in the gut, whereas the IgG is throughout the body, and not as location specific Any chance you meant to say IgG in the first quote? Wasn't it statistically unlikely for him to be negative on all these other tests if he has celiac? maybe .....since all these studies were on biopsy-positive people, it'd be statistically unlikely for a biopsy-positive patient to be negative on all these tests....and if that reasoning makes sense (my brain is a bit twisted now), it makes me think a biopsy positive would be unlikely for my son. Based on such high specificity, is there a decent chance the dr. will diagnose based on tTG IgG alone? I'd prefer to skip the endoscopy since I reasoned (up there) it will likely be negative and start gluten free sooner. Do gastroenterologists typically order the genetic testing? and is it usually covered by insurance? (we have United Healthcare). Thanks DEARLY for your help and patience with my questions!
  6. Hi Nicole, Yes, the Immunoglobulin A was normal. Diabetes has been ruled out. I found that report very helpful, but confusing when it comes to the TTG IgG. It doesn't give it's specificity and sensitivity alone, but groups its specificity and sensitivity (last) along with some of the other tests? Does that indicate the reliability when the tests are combined? Under the paragraph titled "IgA TtG" it sometimes speaks of "tTG" tests, but it's not clear if that includes TtG IgG or only the IgA of the heading. It seems to be the most mysterious of the tests? Is there any other info you can give me on it? Yes, we will do the endoscopy if possible.
  7. Hi everyone, my first posting! Please share any thoughts, I will appreciate it so much. And this one is for my son: He's eight and has been through such a rough time with a broad range of symptoms, from learning issues to emotional problems that don't seem to "match up" with him to low weight and height. Stranger issues too, like an insane hunger even when eating really huge, hearty meals four times daily, extreme thirst, and frequent urination with high volume. Thankfully I am hopeful that placing some gluteny puzzle pieces will bring some relief. So far, his tests show: weak positive TTG IgG normal TTG IgA normal total IgA normal EMA, normal DMG IgA and IgG The TTG IgG is 8.0 U/ML negative range: <6 weak positive: 6-9 positive: >9 (Schedule for first consult with gastroenterologist for next Tuesday) Do these test results seem to indicate greater likelihood of gluten sensitivity than celiac? Is it unusual to have celiac, yet be negative for each EMA, DMG and TTG IgA? Also, he frequently tests low (just slightly) for carbon dioxide. The doctor always says it's irrelevant, but it's perfectly consistent in being always low when it's been tested over the years, so I feel it's a clue. Thanks for your help!