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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.

Celiac And Other Auto-immune Diseases
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8 posts in this topic

I think I may have Celiac disease and wanted to share my story in hope for some support and/or advice from those that may have had a similar experience.

I am 30 years old and have been sick with severe stomach issues (bloody diarrhea, nausea, vomiting, bloated, pain, etc) for about 7 years now. About 2 years ago, I had both blood tests and a biopsy to test for Celiac, along with other tests. The blood test came back positive for Celiac, but the biopsy came back negative, so my doctor told me I didn't have it. I was then diagnosed with microscopic and ulcertive colitis. The doctor put me on various medications and my stomach issues seemed to be under control. Then, about a year ago, I developed a bad rash on my face and hands which then led to dehibilitating muscle pain and fatigue. After much frustration and many doctors, I have now been diagnosed with Lupus and Dermatomyositis -- both auto-immune diseases. I know Celiac is also auto-immune and that once you have one, you are predisposed to develop others. I am now on several drugs including methotrexate, which is causing my hair to fall out. At one time I prayed that I didn't have Celiac so I wouldn't have to stick to the difficult diet, but now that I am experiencing all of the horrible side effects from these medications, I am praying that I do so I can come off the medication on get healthy by changing my diet. I have been on the gluten-free diet for about a week now, but still am not even sure if I have Celiac or if it will work. As you all obviously know, it is such a difficult diet, but even more so when you don't even know if you are going to gain the benefits from it. Although I have some of the best doctors in the area, I can't get anyone to give me a definitive answer on whether or not I have Celiace disease. They all just say "Well it can't hurt to try the diet." Easier said than done when it's not your health.

Has anyone had other auto-immune diseases that have been put into remission after going gluten-free? If so, do you know how long before I might start to feel even a little better?

Thank you.

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I can't offer any suggestions for your medical conditions. Sounds like you're having real problems. I can only suggest that before you lose hope and become too overwhelmed, try seeing a different doctor -- I'm amazed at the way there can be so many different interpretations from the same set of symptoms/tests.

My 14-year old son is type I diabetic, hypothyroid, and probably celiac disease. The blood tests came back positive, it's in the family, even the genetic test pointed to predisposition. But biopsy came up negative. Our family is trying to go gluten-free -- 3 months now. But he didn't have the other symptoms you have -- so I don't really know if it's helpful.

I know that gluten-free is a huge hassle (at least at first), but it cartainly won't hurt you medically -- not like some of the medications. If it comes down to "pick your poison", gluten-free is not poisonous. I've heard that after 6 weeks you should feel better.

Stick with it. Stock up on rice, peas, and steak. Pamper yourself in other ways. And don't settle for wishy-washy explanations.

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JCharwood,

Besides celiac disease, I also have Lupus, OA, hypothyroidism, optical seizures, hypoglycemia and Sjogrens. Almost all of these conditions are the result of undiagnosed celiac disease.

I'm sorry to hear about your hair loss. To date, the methotrexate has not had that affect on me. The Plaquenil has affected my eyes, though. Quite light sensitive and have to have the 6 month eye exams.

But, thanks to the drugs and a gluten-free diet, I can usually make it through the day to teach the kids (we homeschool) and my few music students throughout the week.

Hang in there. There are good days and bad days. The former...we forget we are ill. The latter...we sometimes hope to die.

Libby.

AZ

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Hi Sld,

I can relate to some of your symptoms. I was diagnosed with gluten sensitivity/casein sensitive in December of 2002 but prior to that diagnosis I have had hypothyroid since childhood, low progesterone and now adrenal insufficiency and the latest is suspected low testosterone in addition to osteopinea. Now here's the thing, even with my gluten-free diet none of my symptoms have gone into remission.

I do recommend that you get a stool test and gene test through Enterolab. I was diagnosed through that lab. My nutritionist first believed that I had a wheat and dairy allergy. So to double check his seemingly odd diagnosis, I searched out other sources of diagnosis. I found Enterolab, a non-invasive lab, and was tested. Ironically, the tests confirmed my nutritionists suspicions. I do believe that this is a great place for you to start in your search.

May I also suggest that you research and consider other natural supplements for the future health of your bowels. First, Organic Coconut Oil, Bovine Colostrum and Whole leaf Aloe Vera Juice. They are great support until you know exactly what your true diagnosis is, besides they do not have side effects! One of them is bound to bring relief. The aloe brings instant relief to me, but not my husband. I would love to hear how everything works out for you. :D

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Hi

I am new here and I am curious if anyone has Celiac and also developed a blood disorder also auto-immune. I have been diagnosised with LA antibody. It is a lupus antibody that is a clotting disorder. I do not have Lupus the disease that is different. I have also been told that when you have one auto-immune disease you are highly likely to develope another and so not sure which came first. This blood disorder was found by accident during my pre-screening blood tests for surgery. I now have to be on a blood thinner as if not I am high risk to develop a stroke. At first it was thought to have been caused by using Quinnine Sulphate for my nocturnal leg cramps but I have been off now almost a year and still have the clotting disorder so now the theory is that once an auto-immune response is started it does not go away. Such as Celiac once activated it will always be there and one can only hope for control by being strick with diet.

I am having a hard time finding infomation of this combination. I developed a lactose intolerance with the celiac disease and was also told this is common as when the villi in the bowel is gone and is flat the lactose cannot be digested properly so therefore the intolerance. A dietician says once I have good control of the celiac and the bowel heals I may be able to tolerate some lactose again but will have to be well healed for that. I still have trouble with hidden glutten so still get into trouble .

So anyone have this too???? let me know Celiac is not all that simple I see as everyone seems to develope all kinds of different side effects.

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Hi everyone!

I have similar issues. I am currently on Plaquenil for possible lupus and Levoxyl for Hashimoto's Thyroiditis. I also have endometriosis, hypoglycemia, PCOS, and other autoimmune problems. I tend to be anemic and have low platelets. I have ANA antibodies, anti-thyroid antibodies as well as Sjogren's antibodies. Also, I went through 6 years of infertility & miscarriages before finally conceiving and carrying my son to term.

My almost-2-year-old son and I have been gluten-free for 1 1/2 months now and I am seeing dramatic improvements in our health! The weirdest thing is that my body is reshaping itself - like it's firming up. I supposed I could be building muscle? Also, I have reduced my Plaquenil to 1/2 of the dose and I'm feeling better than I have in years. My hair stopped falling out for a while, but suddenly it's back at it again. (Probably due to my goof up mentioned below.) :unsure:

By the way, we are self-diagnosed. My antibody test came back just a hair under positive - but I belive this is because I am on Plaquenil which suppresses antibodies in general. My GP didn't see any point in going further, so I decided to take matters into my own hands. I have seen enough evidence that being gluten-free helps to make a lifetime dietary change. Plus, I goofed one day and ate gluten and had horrible stomach cramps and had symptoms for 2 weeks afterward. Another clue is that autism runs in my family, and there is certainly a link with celiac sprue and developmental disorders.

I personally don't think the diet is that difficult - but I'm not a huge bread and pasta person. I like corn and corn/quinoa pasta. I also like the rice/almond bread I've been buying. We've been eating more organic things and more veggies and meat. I'm weeding out non-gluten-free items such as make up and shampoo. This diet is totally worth it to feel good! The main thing I miss is pizza from the local pizzeria. *sniff* :(

My son is doing very well. He has gained some wieght and has color in his cheeks. His diarrhea is gone - unless he gets gluten at daycare by mistake. His tantrums have disappeared! It's enough proof for me! (Just don't ask me to give up my dairy! lol) :)

Good luck everyone! I think once you fix the celiac issue, the others should improve somewhat. That's what I am experiencing.

Christine

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I also have auto-immune disorders, mostly skin disorders although I do not have DH. But I do I have alopecia areata - which has gotten worse as I get older, eczema, used to have brittle nails pre diagnoses, and generally have very sensitive skin. I was also hyperthyroid as a child but it corrected itself, as it often does in young children - that was only diagnosed after my mother noticed a small bald spot on the back neck area of my hair line (that's also when the alopecia started).

I've been gluten-free for 2 years but it hasn't seemed to help my alopecia, but did clear up mystery neurological issues that couldn't be diagnosed and horrible leg cramps, but that's another story :)

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Hi, I've enjoyed reading everyone's responses to the topic. I was diagnosed with Celiac about 2 months ago and I've been on the gluten-free diet since then. I don't find it hard to stay on - I wasn't eating much bread or pasta. I miss pizza and the ease of going out to eat - but my iron was so low it's good to feel better now. My levels have come up. I take a baggie with dried fruit and nuts in it when I go out in case I get tempted.

My other autoimmune disease is multiple schlerosis. I'm 56 and was dx'd with ms when I was 53. I can talk to people about the celiac - but not the ms. Guess I'm still in denial. I think they both have something to do with each other. I think the celiac kicked in the ms - and I think stress started the celiac. MS has made me weak and the anemia has also made me weak.

The only symptoms for celiac that I had were bloating (I couldn't understand why my stomach was so distended, I'm thin and don't have any diarhrea). My worst symptom is terrible abdominal pain. I get it early in the AM - like 6:00 - and drink water and it goes away. Twice I went to the hospital 'cause the water didn't take it away and it was so bad. I haven't had this since I've been gluten free. Well, that's my story - can anyone relate to this? Jane

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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. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. 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If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
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    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
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