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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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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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