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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.

Feel Abnormal
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5 posts in this topic

I have only been recently been tested for celiac disease, but one of the signs my dr took as me having celiac disease was my startling weight GAIN! I gained 36 pounds in less than 3 months. After checking my thyroid (I do have Hypothyroidism) and seeing that being good, she checked my vitamin levels and saw I was deficient in everything. She then sent me to a GI, who I see next week.

I have gained a massive amount of weight in such a short time, and I am already overweight to begin with. Most people here say they were losing weight fast befoer diagnosed...I feel abnormal.

Now I am going to be struggling double to lose this weight. :(

Just ranting.

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Rant away. This is the place.

I think there are just as many overweight celiacs as there are underweight celiacs. some gain weight, some lose weight & some CAN'T gain weight & some CAN'T lose weight pre diagnosis. I think a lot depends too on the stage you're at with the celiac disease. Maybe. This stuff is weird & there's no one size fits all. But I can say you are NOT abnormal.

Now breathe.biggrin.gif

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Im in same boat. I've totally gained on gluten-free diet and don't feel energetic or satisfied from eating. I'm looking out for a diet that will work for me.

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I had unexplained weight gain no matter how hard I exercised before diagnosis. Still struggling to lose it 2 1/2 years later.

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I had unexplained weight gain no matter how hard I exercised before diagnosis. Still struggling to lose it 2 1/2 years later.

Thanks everyone.

I have always been a good 40-50 pounds over weight. Last year, I worked for the Post Office (temp) and walked between 8-9 hours a day, up and down stairs, carrying a 30lb bag, etc. I quickly lost 28 pounds in a few months. I left in Dec and by March, I had gained all 28, plus 5 more. In 3 months.

My Dr agreed that I shouldnt have gained that much..granted the amount of exercise changed, but my diet did not. I ate a little less since I wasn't using so much energy, if anything, but I didnt just sit around eating chips and stuff.

I do have a thyroid issue but my levels have been great.

So frustrating. I honestly thought food allergies happened to other people, not me :(

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    • Keurig K-Cups
      I haven't really disclosed much at this point as i just joined. Yes...I have Endoscopies done on a regular basis. yes...my dr here in NS is one of the main GI specialists who does specialize in Celiac Disease. I am actually having all the procedures done again next week. Just diagnosed with Limited Scleroderma. Also suffer from IBS and diabetes. We hardly ever eat out. My kitchen is completely gluten-free. I do have a separate toaster and a few untensils in case my hubby wants regular toast! Specialist has said that of all the Celiac patients has has I am probably one of a few who are extremely careful when following a gluten-free diet...however...I am seeing a dietician at the Hospital clinic to review my diet! I think I have addressed all of your questions and I commend you all for asking! I was diagnosed in 2010 but from the biopsies had the disease for 23yrs from then but wasn't experiencing major symptoms. Dr and I have talked about Prednisone however due to all my other issues we feel it's best for now just to do the procedures on a regular basis. I know refractory is rare however with my autoimmune issues..this probability is high. The only real consistent factor that I was questioning is the K-cups. I will probably be following a FODMAP for a bit under the consultation of the dietician. We'll see what happens!
    • Keurig K-Cups
      Sorry,  I know you didn't ask for info on refractory but I am worried that your GI does not  know much about Celiac.  I would hate for you to have to have the massive amounts of steroids, even Chemo, that will be prescribed for refractory Celiac.  If you haven't even had a repeat endoscopy, and he is just diagnosing based on a slightly elevated ttg (which could be from your other AI disease)... well that is a bit like getting a mammogram and finding a small lump and jumping right to invasive cancer with a complete breast and lymph node removal and chemotherapy!  Without even a biopsy of the lump!
    • Second Panel has come back...advice?
      Absolutely! Our Motto: READ EVERY LABEL EVERY TIME
    • Keurig K-Cups
      Many celiacs are not healing because they are not diet compliant due to hidden sources of gluten.    Read this research paper about this subject.  As Karen said, refractory celiac disease is rare but some doctors are quick to jump to that diagnosis  because they are not celiac savvy.   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf welcome to the forum!
    • Keurig K-Cups
      Envelope glue is another internet myth. You didn't mention that you had had repeat endoscopies showing continued villa  damage. (That is how refractory is diagnosed)That is completely different than a bit elevated tTg .  True refractory is pretty rare.  As you can see from my links, a slightly elevated tTg may have nothing to do with gluten ingestion and does not mean you are " refractory".    Before resorting to drastic treatments, you might want to look into the " Fasano diet".  It is a super strict diet - mostly whole foods, no eating out, etc -that cleared up people being labelled " refractory".  If that doesn't do it, look at the University of Chicago Celiac Center site,  they have some studies going for people with refractory.   And really, if you have other autoimmune diseases and have not had a repeat positive endoscopy, the other AI s are probably causing the elevated tTg and has nothing to do with Celiac and no villi damage.   That wouldn't be refractory.   http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease
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