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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 Megan1980

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  1. Oh, I also should have said, to Ravenwoodglass, my B12 was normal. It was also normal last year when tested but the folate was super high. I asked my doctor what that meant and she said "I don't know" and left the office. This year when tested the B12 was about the same but they've changed levels for folate so I'm not sure if it's okay now. It still looks high but was not in the "abnormal" category this time around-- but I don't really understand the results.
  2. Thanks for all your comments and advice. I had many symptoms suggestive of thyroid issues so I got those antibody tests too. All my panels came back negative. I believe I got the full celiac, including the IGA deficiency or whatever that is, the test to see if you even have enough of the stuff to make it show up. My score was slightly higher than the one I had 15 months before but still not even into the "weak positive" category. I got the thyroid peroxidase enzyme test (TPO) and another couple of thyroid antibody tests. According to all the blood work I've had, nothing is wrong with me besides a low vitamin d level despite my constant high intake and low ferritin, and some BUN level in the blood that when I looked up online said indicative of either low protein diet or malabsorption. I feel I must have some sort of absorption issues to be having those lowered levels. The thing I can't get an answer on is whether non-celiac gluten intolerance can cause malabsorption or deficiencies. And I know they can cause similar symptoms, but are there any symptoms that would be more indicative of celiac rather than just intolerance. I know I have the genes for celiac and my sister is positive, my other sister has the gene but got a negative blood test, says she feels better when she's gone gluten free but since she doesn't have celiac she doesn't stay on the diet because it's too hard. My mother has never been tested but knows she has issues with gluten. There are lots of other aunts, uncles, and cousins in my family who have confirmed celiac. Now I'm at the point where I'm being flagged as nuts by my doctors and I'm running out of hope. I have so many symptoms, it's crazy. I've had full-on hallucinations, what I believe was occipital lobe seizure (my symptoms were perfectly described by the symptoms list for it) numbness, tingling, sudden muscle weakness, muscle wasting, cognitive issues, I could go on and on. I understand that some people don't see the need for diagnosis, but I would like to know whether I have celiac or just intolerance. To me it's the difference between worrying about if I go out to eat and soy sauce touches something or working in a kitchen and inhaling flour (I've been a cook so it's important to know how careful I need to be). If I'm gluten intolerant and it's not ruining my intestines and possibly my brain and possibly leading to lymphoma, that's a huge difference between just maybe feeling crappy for a bit. I hope that makes sense. I've been reading around here for answers and done tons of research online but I still can't get to the bottom of celiac vs. non celiac gluten intolerance.
  3. Do you have a source for the information that non-celiac gluten intolerance can cause deficiencies, because I've been looking for that info everywhere and haven't been able to find it. I have symptoms that fit with Hashimoto's and celiac but my celiac panel came back negative as did my thyroid antibodies. The only thing my blood shows is low vitamin d (though I've been taking it for years) and low ferritin. Also I had a low BUN score which when I looked up it said it was either from a low protein diet or malabsorption. I do not have a low protein diet. I'd love to get some answers! At this point I've been told I have somatization, but I know that's not the case.
  4. I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed. All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed. I know this process is really frustrating but do lots of research and don't give up! I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.
  5. My older sister says when she went gluten-free she actually went at least once a day instead of every couple of days or more. She has the gene or genes for celiac but has never had a positive test.
  6. Hello, I hope this makes sense but my brain is pretty fuzzy right now. I'm trying to be as brief as possible, but I don't want to leave out any important details, so I apologize if it seems too long and detailed. Celiac runs in my family. I have the genes for it (tested 5 yrs. ago) but was told I didn't have it at the time, but could develop it later. I got tested again 15 months ago and it came back negative. I didn't think I had celiac, so continued on my regular diet. Then I was injured, had surgery, and was in a wheelchair for about two months. I've heard the disease can manifest after surgery and stress, and that situation was definitely stressful. Then I was convinced by family members to go gluten-free anyway, and I started that, but when I ate a bagel again, I got some serious brain-fog. I decided maybe I should try to get a diagnosis before going gluten-free for good. I'm not sure how long I was really gluten-free. It could've been a month or it could've been a month and a half, I'm just not sure. But I think I was going gluten-light for maybe a month before that. Now I'm trying to do a gluten challenge and I don't know if I can do it. I'm having so many strange symptoms, I had a few days of dropping everything I tried to pick up and move around in my hands, like q-tips, utensils, etc., just having really poor dexterity, numbness around my lips, getting headaches frequently, jaw tightness, pains all across my facial bones, swelling in my gums, teeth pain, feeling like a new form of migraine I'd never experienced (used to get migraines but they pretty much stopped years ago) weird pressure changes in my head cavities (hard to explain), pressure in my palate, feeling like my ears need to pop, heaviness in my arms, searing, tear-inducing pain in my right arm, moving to my back around my shoulder blade, hips, cramps in my calves, horrible pains in my feet and heels, knee pain, ankle, wrist, tailbone/sacrum, I've had tightness in my throat, lump in my throat feeling, difficulty breathing, fatigue, feeling like I need to lay down 3 minutes into a shower, feeling like it's hard to raise my arms to comb my hair, then forgetting which way to turn the hot and cold shower faucets to regulate the temp., then trying to brush my teeth and thinking I had the toothbrush in the wrong hand shortly after. It took me a bit of looking down and thinking about it to realize it was the correct hand. I can't remember anything like that ever happening to me. I've had days where I felt totally lethargic in the morning and then at night this super irritable, restless leg syndrome kind of feeling, just really uncomfortable and amped up kind of feeling. I've had a lot of trouble finding the right words. Like for instance trying to ask someone about "bingo" and what came to my head as I was grasping was "bicycle race". Trying to explain things or speak is super frustrating, and when my boyfriend asks me questions that require explanations I sometimes just have to tell him I can't answer. It's like my brain is stuck, and it just makes me really frustrated. I've been really touchy and emotional, and cry. Another thing is that my period came at the normal time, but was very light and then just stopped. It's definitely the weirdest period I've ever had. Usually they are regular/predictable/similar in length and flow. I've also had more stretch marks seem to appear overnight. I got stretch marks on my stomach after the surgery and gained a bunch of weight. I was already overweight but I probably gained 50 lbs. since then. The weird thing is that you'd think once I got back to walking and using my legs, some weight would come off, but it seems like I'm gaining more than I did in the wheelchair time. I explained some of those symptoms to the doctor and she said she had no idea, and when I talked about the breathing problem and the tightness in my throat she said it was probably a panic attack. I used to get panic attacks-- it was nothing like that. That's the thing about all of these symptoms-- they're not things I've experienced before. I tried to chalk it up to stress, or think of the possibility that it could all be in my head, but it just doesn't add up. Could I really will my joints to ache? The thing that is especially driving me crazy is the possibility that I'll get another negative test. So I want to keep doing this gluten challenge thing but I'm not sure I can hold on much longer. And it's so hard to get definitive answers about how long the challenge needs to be. If I'm having symptoms, will I still test negative? I know I could be gluten-sensitive rather than celiac, but I really want a definitive diagnosis. I've looked up my symptoms and they point to hypothyroid. I know Hashimoto's goes with celiac sometimes. Some of the symptoms seem to overlap. So why am I writing all this? Well, in part to see if symptoms match anyone else, in part to vent, and also maybe hoping someone can shed some light on the gluten challenge and how much longer I have to endure this. Thanks for reading!