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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? - 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

Hashimoto's And Celiac?

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I know they are both autoimmune disorders so I know someone can obviously have both. I'm wondering if there is any literature that states the percentage of people with Hashimoto's who have Celiac as well? My Mom, her twin sister, and my cousin (mom's twin sister's daughter)all have hashimoto's. My mom and cousin are both on a gluten free diet but are not super strict, especially my mom who cheats pretty frequently. My aunt goes back and forth, one minute she thinks she has a problem with gluten and the next she is eating regular gluten foods. It's a mess! :P My mom and my aunt also both struggle with anemia and my aunt just had a hysterectomy at age 49, she was EXTREMELY anemic before hand. My aunt also gets a rash on her belly. I really suspect celiac here, especially with the issues that me and my girls have dealt with so far. Oh yeah, their brother (my uncle) has type 1 diabetes and overall not really healthy. I'm just looking for statistics here since they seem to respond well to that. Thanks!

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I don't know the statistics, but my search in 2008 lead me to celiac. I was looking for a connection on hashimoto's disease and low ferritin/anemia. I found lots of articles referencing celiac. It was this research that eventually prompted me to get tested by my endocrinologist for celiac.

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I too am wondering about this today. I just had a Celiac blood panel and a Thyroid test done this morning. All the women in my family have underactive thyroid.. and i'm thinking I have Celiac too. I couldn't believe how hesitant my doctor was to test for Celiac!

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I've had Hashimoto's for 15 years and have been gluten free for 3 weeks now on the advice of a new doctor. All the women in my family have thyroid problems and/or auto-immune problems of some sort.

My 90-year-old mother was first diagnosed with Hashi 5 years ago! Her sister had Hashi and then it flipped and became Graves.

None of us ever suspected a problem with gluten. But my mother dropped a bombshell on me the other day. She said that she remembers HER grandmother (in the 1930s) going to a special store to get gluten-free flour to make bread! But as far as I know, nobody in my family avoids gluten or has been diagnosed with Celiac, not even my mother or her sister.

My Celiac test was negative twice in 10 years. But recently I found out that my IGA is low, so it may be possible that I have some form of Celiac or just gluten sensitivity and not have known it. My clueless doctor didn't understand that maybe I should have further testing (IGG).

I have eaten gluten all my life and never considered that it was a problem, until the past few months. Body aches (feeling like there is glue in my body; very stiff), joint and muscle pain, slow healing of "pulled" muscles, worsening reflux, low B-12, and adhesive capsulitis in my shoulder prompted me to finally say, "Whoa, WHAT is going on????!!!" Suddenly, in the course of about a year, it seemed that something was crippling me for "no reason."

I got a lot of thyroid books out of the library and stumbled upon the Stop The Thyroid Madness (STTM) website (and eventually bought the book....both are EXCELLENT).

I saw a doctor from The Holtorf Group in N. Calif. They are extremely expensive. They ran a lot of tests. I found out that I have Fibrin in my blood and apparently have a problem called Hypercoagulation (thick clotty blood). I have no idea why, or when this started. Also, although my TSH was "perfect at 1.26" other tests (free T3, Reverse T3 and reflexes) showed that indeed I was still hypo and needed, at the very least, some T3.

I am not going back to the Holtorf doctor for several reasons. First, they are extremely expensive and aggressively push their private label supplements at you. Second, they do not really understand how to prescribe T3 and will not prescribe natural thyroid or do saliva cortisol tests. Thirdly, the doctors there are overloaded and do not have the time to even spend 5 minutes on the phone with you if you have questions later. "Just take the supplements." Yeah....$1,0000 in supplements! You read that right, one thousand dollars. I did not buy them. Are they crazy?!!!

Anyway, at the prompting of information from STTM, I got more blood tests and discovered that I am also anemic (low Ferritin, low saturation, high TIBC).

Then I saw the new doctor who said outright to me "You have an auto-immune disease. You should not be eating gluten!" He is the first doctor who ever mentioned this to me. (The expensive Holtorf doctor never mentioned gluten to me). Like I said, I've eating gluten my whole life. I didn't think it was a problem. But I've been gluten-free for 3 weeks now and in general I notice a lot less gas and bloating. And I'm not craving carbs or ANYTHING anymore. In fact, I barely have an appetite (is that bad?? I'm a little worried about that). So I assume that I must be sensitive to gluten....otherwise, why would these symptoms go away from eliminating gluten?

I have not done a challenge test yet. This weekend I plan to eat a few regular crackers and see how my body reacts.

I have an appointment with a Hematologist soon to discuss the coagulation thing and whether any of it is related to Celiac or gluten intolerance. I suspect that I may have some sort of malabsorption problem.

Everything in the body is related. The thyroid regulates a lot of things. Auto-immune diseases can really wreak havoc.

I hope that soon I will find the answers to my problems. Not sure whether I will need to continue staying gluten free or not. Not sure whether I will need Heparin injections for the coagulation problem. And I'm hoping that I can switch from Synthroid to Natural Desicated Thyroid, because I think that taking only Synthroid for 15 years has been a BIG part of my problem, causing these muscle problems, lingering depression, and other issues.

It is very hard to find a doctor who knows the proper tests to run, and even harder to find a doctor who interprets the tests properly and treats properly.

When it comes to thyroid issues, you need to educate yourself. I have found that most Endocrinologists are pompous idiots or slacker doctors who are not up on the latest research (such as Reverse T3, the importance of iron tests, B-12, or gluten/food issues relating to auto-immune problems). Educate yourself. Otherwise you will be at the mercy of sub-par doctors who will keep you sick.

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    • Thanks desirun. I have takenhim off gluten and he has improved out of sight. Only times he hasbeen sick since was when he ate something with gluten. His 14 yr old brother has just been diagnosed with type 1 diabetes and now coeliac screen has come back positive for him as well. Ttg was 745. normal is anything under 20.  Waiting on gene test for him before scheduling biopsy. Makes it more likely that my younger son does have coeliac now I think. Will also be getting my daughter tested asap. 
    • I've done a lot of "hotel hobo-ing" pre-gluten-free and post-gluten-free. Previously, I did a lot of traveling for university sports and was concerned with saving money/having reliable food that would be nutritious while competing. Now I am more concerned with not getting poisoned. Bring [dry] rice or corn grits and cook them like oatmeal using either a kettle at the hotel or in the microwave. This does not take up much room in a bag for flying. I personally make my own rice grits using my coffee grinder (do not use brown rice though - it'll take a long time to cook!), but you can probably buy them pre-made.  You might also be able to snag single serving honey, peanut butter, jam, sugar, salt from the hotel itself if you're super thrifty . But I usually just buy a jar of peanut butter, tub of yogurt and some fresh fruit or vegetables from a grocery store. Maybe some jerky if I'm feeling fancy.   If the hotel room doesn't come with a kettle or microwave, you can ask for one. I have never had a problem asking for either a kettle or a microwave when I told the staff I had "severe food allergies" or a "medical reason." . You could also use the coffeemaker to boil water/prepare stuff, but I would not if you are sensitive. Lots of people like old, gluten-eating me use the coffeemaker to cook instant noodles and oatmeal (yes, it does actually work). I would hazard that unlike the mugs/cups they give you in the room, the coffeemaker only gets a superficial rinse between customers. I personally bring a single use drip cone and filters for my coffee or just get the hotel coffee.
    • If it were my child, I'd keep him off of gluten and dairy as recommended by the dietician, especially since he's not well and this is possibly celiac.  It won't hurt him to be off of gluten and he may even improve, but if this is celiac disease or gluten intolerance, he will not improve on the gluten.  Right now your goal is for him to be well as soon as possible. I personally would wait until your son is healthy and recovered to even consider reintroducing gluten for a challenge. There is nothing worse then not having clear answers. I would encourage you to be persistent. Eight weeks is not typical for a "bug." Follow your gut, if you are getting the cold shoulder see another doctor/doctors.  Get and keep copies of all test results as part of your son's history to help new consults avoid retesting and to help determine the next steps in his care. Have you seen an allergist...?  
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