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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.


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JaneWhoLovesRain last won the day on December 1 2012

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  1. I was at a used book sale yesterday and happened to see an old dermatological textbook. Of course the first thing I looked up was dh just to see what it had to say. What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line. The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember. Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back. Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this. That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.
  2. I'm wondering if anyone has found they have a problem with this granola. I was happy to find this as it is a good dollar or two less expensive than other brands and it tastes great. But starting a day or two after my first serving of it my intestines are totally messed up. It says "gluten free" but nowhere do I see where it says "certified" or that little picutre of wheat with a red line through it. Jane
  3. As i figured they would tell me at emergent care, it's a "virus." grrrrrr It seems that is the standard medical answer for everything. This just doesn't feel like a "virus." So I'll wait a few more days and if not better, I'll go back.
  4. Now day 6 I thought I was better, I felt better and did lot of gardening this morning, then came in to eat lunch and suddenly felt sick and the di came back. Very distressed over this. The thought of some food carrying germ has come to my mind many times but I am super ocd about washing my fruits and veggies before eating, always worrying about getting listeria or e-coli or any of those things. I even wash pre-washed stuff, I even wash oranges!! And I won't nibble on a grape in the store to see how sweet or sour it is because I know they aren't washed. So I've kind of put the idea of of anything along this line aside, not to mention I haven't heard of any recent food borne illnesses. I know my diet can be rough on the intestines but for 5 weeks I had no problem at all, it wasn't until week 6 that I started to feel unwell. That is what is so confusing about it. If there was even the possibility of having cross contamination I would consider that but with a diet consisting mostly of veggies and fruits I don't know where the problem could be. I have a gluten test kit and tested my pumpkin seeds and Planter's mixed nuts and they both turned up negative. I have one more test left and I'd try it on something but I have no idea what to try it on. Orange juice?? I think I'll head over to the emergent care, hopefully they won't just brush my symptoms aside.
  5. UGH!! I am now on day 5 of diarrhea and am getting worried. Having dermatitris herpetiformis my GI symptoms with celiac have always been minimal. I accidentally got glutened earlier this year (didn't realize baking spray had wheat and was eating muffins in which the tin had been sprayed with this for about 3 weeks) and my rash which had been gone for 3 years came back, my tum-tum was okay though, no problems there. So I doubt this has anything to do with being gluttened but I wanted to ask if anyone has any insight or idea what this could be. Six weeks ago I started going to a chiropractor for something unrelated and he put me on this new diet, basically no carbs or grains, no sugar, no dairy, no nightshades, no chocolate and lots of fruits and veggies. Meat and chicken are allowed as are nuts and eggs. So for the last six weeks I've been eating a big salad of raw kale, spinach, carrots, cucumbers every day and in general have upped my fruits and other veggies. If the diarrhea started right after the diet I would say aha, but for the first 5 weeks I ate this diet with no problem at all. It wasn't until six weeks that this all started. I have no fever and my appetite is okay but I feel exhausted and achy, no energy at all. And I'm very worried, afraid I will never be well or that it is something serious. I have to say I'm not real happy with this diet and the last 2 days I have been eating foods that are on the no list (granola, tomatos, potatos but not a lot of these). This doesn't have any connection with the diarrhea cause that started several days before I strayed. I was on the thin side to start with and have now lost about 10 pounds and am seeing bones stick out that I never saw before - I don't like this at all. Do you think there could be any connection between the diet and the lousy intestines after having no problems for 5 weeks? Oh, one more thing. My magnesium was on the low side in January so I've been taking supplements for that. A couple weeks ago I had my blood retested and my levels are back up so I stopped taking the supplements last week, and it was a couple days after that the diarrhea started. I only mention this because it is kind of unusual. Usually people get di when they start magnesium, but not me! I get it when I stop. Jane
  6. It doesn't sound weird at all, but unfortunately I don't think I've had any new foods or prescriptions though it is hard to say cause it's been going on a couple years now and I can't remember what if anything changed two years ago. My two prescriptions haven't unless the inactive ingredients have changed.
  7. I kind of assumed it was a vitamin B issue and probably B6, but now after researching some more I see it can be yeast or bacterial. I have used bacitracin, cortisol and a couple of other things with no improvement. I decided to pick up some anti-fungal medication at the store yesterday but all they had was stuff to stop jock-itch. The only thing that went through my mind when I thought of putting that on my lips was ewwww. I read somewhere else that a couple people found relief with Vicks Vap-O-Rub so I tried that and I do think it is getting better. Jane
  8. I have no idea if my vitamin B complex is methylated or not, and I honestly never even heard of this. It is a CVS brand, buy one, get one free, so I would assume it probably is the more common kind. I don't see anything on the label that has either of these words (but it is gluten-free). Vitamin B12 isn't even part of this pill. But I did buy another separate B12 pill when I realized this one didn't have it. However I stopped taking the B12 because I found it had mannitol and I am very sensitive to that.
  9. Does anyone else have this? It has been about 3 years off and on for me. I thought it was because I was deficient in vitamin B so I started taking supplements. It finally cleared after a few months. Everytime i stopped the vitamin B, even for a week, it would come back. I asked my doctor and he said it looks like rosecea (stupid response, it does NOT look like rosecea, I have cracks on the corners of my lips not a bumpy red rash on my face). Finally I stayed on the vitamin B and it went away. Then my yearly phyiscal was coming up and I did something stupid, I stopped the vitamin B about a month before my appt hoping it would come back so I could tell my PCP and insist he find why I have this. Well, this time it didn't come back and I never even mentioned it to the doctor thinking it was gone for good. I stayed off the B supplements. Then about a month after my appt it came back. This was in June and it is still here. I started again on the vitamin B and it has lessened but has never gone away 100%. It hurts, itches and looks awful. And I'm scared as to why I can't get rid of it. Obvious answer probably is to go to to the doctor but when he looks at me and says it roseca I feel like I am fighting a losing battle. So I wondering if a anyone else has this and if so do you know why and how did you get it to go away? Jane
  10. Hi Loverbug - yes, I've been down the scabies road and so have many others here. The dermotologist I saw insisted it was scabies because it itched so bad, he said dh does not itch (he was very stupid). My PCP's PA also said it was scabies. I saw another dermo and had a biopsy for dh but it was negative, too late I found out she biopsied a lesion, not a clear area. This doctor said it probaly was not scabies. I live alone, I had virtually no physical contact in the weeks before my rash. Unless you can get scabies from a grocery store cart it would be almost impossible for me to have had it but they insisted that is what it was. No one ever did a scraping. If I had it to do over I would not have done the scabies treatment because now I will never know with 100% cetainty that it was dh I had. It was a GI doctor who told me I had dh/celiac but by the time I saw him the rash was 99% gone. I also suffer from vertigo attacks and because they may be gluten related it is not safe for me to take the gluten challenge so I was told to assume I have celiac and never eat gluten again. My biopsy came back as possible allergic reaction, which sounds similar to your possible medication or bug bite. At the timeof my rash I had been gluten-free for a year or two but I believe I had cross contamination. There are a lot of similarities between the two but also some differences. Both itch like the dickens, but dh itches more.. You wrote "so extremely itcy I serously wanted to die." I so well remember thinking that if I had to live like this for the rest of my life I would rather be dead. A classic symptom of scabies is that the rash is between the fingers; it dh it presents mostly on the knees, elbows and buttocks. That's where mine started but slowly spread elsewhere. Mine was exremely bilateral. Almost a mirror image from side to another. Another dh sign is burning a few hours to a day or two before a new area of breakout. Did you husband or daughter ever break out? If not, it would be quite unlikely that you have scabies, it is really catchy!! The dapsone could definitely be the reason things are getting better. Can you post pictures?
  11. RIta - I had poison ivy quite regularly as a child and can easily tell the difference. They both itch terribly but there are differences. DH will be symetrical and the blistering isn't as obvious. For me the majority of the poison ivy would be gone in a week but DH seemed to last forever. Also my skin was much more sensitive and inflammed with DH. They felt different, but I don't know how to explain a sensation. Have you tried taking an antihistamine?
  12. Hi - I just happened to log in today! When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone. He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees. I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t. Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement. I've never taken it though, so I can't speak from experience, just from what I've heard others say. Jane
  13. Hi - I'm wondering if you are eating anything that has the ingredients sorbitol or manitol or inulin. These give me terrible stomach and intestinal cramping and diarreah and nausea. They are right at the top of my do not eat list along with gluten. Edited to add - xanthan gum can do it also and unfortunately it's in a lot of gluten-free food as well as non gluten-free food.
  14. Personally I think if my dentist has sent me a similar letter 15-20 years ago I would have 1) not believed him for a second that I might have celiac and 2) freaked out cause it would be scary to get a letter like this. However, I will say that if he examed my mouth/teeth and then verbally told me his findings it would have gone over much better. He could have answered questions I had, reassured me I'm not going to die within the week, given me a print out, offered to write a letter to my doctor, and also told me that chances are I do not have celiac but I should perhaps be tested because there is a slight possibility of it, and it would be good to know this sooner rather than later so I can start treatment. I think if any medical doctor/dentist sees something that is not in his field of expertise but is concerning he has an obligation to inform the patiet (for instance if the eye doctor notices a bad looking mole on the tip of a patient's nose he needs to tell the patient to get it checked out and follow up to make sure this happens, unfortunately most doctors don't have time to make sure the patient follows up.) I remember going to a new dentist 15 years ago and the hygenist commented on something about my teeth, I don't remember exactly what it was other than some sort of abberation such as ridges or pitting or something that I now know can be indicitive of celiac but back then I hadn't a clue. This along with a lifetime of multiple cavities, root canals an crowns should have clued a dentist in somewhere along the line that something might be going on but other than this one hygienist there has never been any mention of anything at all by any other dentist or hygenist. Probably most dentists are as clueless about celiac as other doctors. SInce my siblings have similar dental issues but do NOT have celiat it may just be a genetic thing. (As an aside I just did a search of images of "teeth celiac" and I've got to say my teeth don't look like any of those. IMH, I think the vast majority of teeth problems are not celiac related)
  15. Thank you for the explanation Peter. I appreciate it.