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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 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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Hi there, this is my first post ever, on any forum. I just don't know what to do anymore. I was diagnosed with celiac disease about 2 years ago. Blood test showed positive twice then a positive endoscopy. I have been able to keep my symptoms (fatigue, anemia, hair loss, anxiety) under control with a strict gluten free diet, until a few months ago. My symptoms started coming back, at first I thought I was accidentally ingesting wheat, but I can't seem to pin point what I was eating. Finally after a few weeks and some serious crashes (including bad cheats pains and being dizzy to the point of blacking out every time i stand as well as often when i am just sitting), I went to my doctor. He ran blood work, and said my celiac seems to be under control, he said when i was diagnosed my number was at 156, and now is at 11. Unfortunately, my blood cell counts were down, low red and white as well as two other blood related counts. He said my iron is fine, as well as all my other vitamins and nutrients. He does not think my symptoms are related to my celiac. I am now permanently off work, and waiting for more tests to be referred to a hematologist. The problem is when I am not doing any physical activity, my symptoms subside(I even had a second blood test when I was feeling better and my numbers were back to normal), but as soon as I go back to activity (walking, doing the dishes, act..) The symptoms come back(and the blood cell count goes back down). I realized today that I have been eating oats I got from a gluten free store recently. They say wheat free on the bag, but are they gluten free? I also work with hair dye that all contains wheat on a regular basis (when i wash it out it is on my bare hands about 4 times a day 5 days a week). I just want to get back to my regular life, and currently this is not an option. I still think this has something to do with my celiac, as the symptoms are very similar to the ones I was having before I was diagnosed, but my doctor thinks it has to do with my blood or an unrelated auto immune deficiency, and not the celiac. Has anyone had a similar experience? Can celiac result in a low blood cell count? Should I seek a second opinion from another doctor? Please help. Thank you.

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Some Celiacs react to the gluten in oats.

If the oats were made in a dedicated gluten free facility then this might be the case for you.

If they were not made in a dedicated gluten free facility then they likely contain gluten, as virtually all oats are contaminated with wheat unless they say they were made in a gluten free facility.

I would only eat certified gluten free oats to do the experiment to see if you still feel sick.

Can you wear gloves when you are working with wheat containing ingredients at work?

Unless you are able to clean all of the dye off your hands and from under your nails, your food could be getting contaminated from the gluten residual on your hands.

Just a couple of thoughts for you before the hematologist weighs in.

Good luck.

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Thanks for your thoughts, i really appreciate it, i never thought about the dye under my fingernails. I am going to cut out the oats and since I'm not currently working, no dye either, and see if i start feeling better. thanks again.

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I would use gloves for dyeing. My stylist does and she doesn't have any problems with the ingredients.

Your " numbers" for Celiac are normal? Then this may have nothing to do with Celiac. Your red and white cell counts go low with activity? My thoughts are that this is not Celiac related and you might need to see a " blood" doctor ( hematologist).

I know people with some odd blood disorders that are quite manageable.

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I would use gloves for dyeing. My stylist does and she doesn't have any problems with the ingredients.

Your " numbers" for Celiac are normal? Then this may have nothing to do with Celiac. Your red and white cell counts go low with activity? My thoughts are that this is not Celiac related and you might need to see a " blood" doctor ( hematologist).

I know people with some odd blood disorders that are quiet manageable.

I guess I was just hoping there was an easy answer to this, like diet adjustment, but thank you for your honest opinion. Its good to hear that lots of blood disorders are manageable, because google gets scary.

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I guess I was just hoping there was an easy answer to this, like diet adjustment, but thank you for your honest opinion. Its good to hear that lots of blood disorders are manageable, because google gets scary.

It is good that you are following up with the hemetologist and hopefully he will have some answers.

You could of course also have other intolerances. Soy and dairy being a couple of the most common. Have you tried doing a food and symptom log? Or going with just whole foods like meats, fruits and veggies, for a while to see if it helps. You also need to make sure you are taking all the precautions needed at home.

If you can remember what may have changed when the symptoms started that may also give you a clue as to what is going on. New med, new job working around gluten, new hobby, home remodeling etc...

I'm sorry you are feeling so badly and hope things get figured out and you recover soon.

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It is good that you are following up with the hemetologist and hopefully he will have some answers.

You could of course also have other intolerances. Soy and dairy being a couple of the most common. Have you tried doing a food and symptom log? Or going with just whole foods like meats, fruits and veggies, for a while to see if it helps. You also need to make sure you are taking all the precautions needed at home.

If you can remember what may have changed when the symptoms started that may also give you a clue as to what is going on. New med, new job working around gluten, new hobby, home remodeling etc...

I'm sorry you are feeling so badly and hope things get figured out and you recover soon.

Yeah I was actually thinking about getting one of those food allergy tests done to see if I do have anything else but I've been researching them, and it seems they may be somewhat inaccurate. Have you heard anything about these testa? I might just get one done anyway, some people seem to find success with it. Going on a food elimination diet may be best. It looks like soy, lentils, dairy, and eggs are pretty high on the list. I am 27 and have never consumed meat in my life (parents are vegetarians, raised that way), I would like to avoid it at all costs, any thoughts on other forms of protein? I also can't seem to find any research pointing towards the drop in blood cells being related to food allergy. Everything seems to be related to gastronomical issues, but even with my celiac that has never been a major problem for me, who knows? I'm willing to try just about anything.

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If gluten free oats turn out to be a problem for you then be aware some gluten free products can have cross contamination from them also. I am EXTREMELY sensitive to gluten free oats and even slight cross contamination from them. The CC kept me sick for 8 months before I figured it out. I already knew I couldn't eat the oats but didn't think about CC from them. If I carefully source gluten free products that don't use any gluten free oats then I'm fine.

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I don't know if anyone is still paying attention to this thread, just thought I'd let ya'll know that since going off the oats, and not being at work therefore not being in contact with the wheat containing hair dye, as well as being extra careful with my diet (no eating out) I am finally starting to feel better. I did a lot of research on what was going on, and it turns out celiac disease can cause a temporarily low blood cell count, and if you're not consuming large amounts on a regular basis, you blood will test negative for celiac disease (I'm sure everyone knows that). Why am I not a doctor?...and Why does gluten want to ruin my life?... :(

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. 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