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Hi, I'm very new to celiac disease (actually the testing is next week, but Dr. pretty sure) and wondering if anyone has gained weight prior to finding out--I've put on around 30 pounds but have all the other symptoms of celiac disease.

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That could be from stress...some people gain a lot of weight when they're stressed, as you might be before finding out if you have celiac.

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Hi! You may want to be sure you do not have hypothyroid. It is commonly associated with Celiac and can cause weight gain. I gained some weight prior to learning I have hypothyroid. Once diagnosed and regulated on Synthroid I had no trouble dropping the weight.

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;) sometimes we celiacs are different then others--i was heavy before going gluten-free--from what i understand--some of us react differently--when the gluten and our bodies are fighting each other, some of us dont lose weight--our bodies feed off of the fat we take in and we gain--i lost 60# once i found out i had to go gluten-free--my bf often asked me why i was overweight on what i ate and it baffled me too--i have never been a heavy eater--i guess it was just the way my body reacted--hope this is a little comfort to you--deb
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Darlindeb, that's very interesting that you lost weight once on the gluten-free diet...some background info on me: I am 46 and not too long ago found out I had severe osteoporosis (-3.1 in my hips) and I have not gone through menopause yet and don't have any of the typical reasons (anorexia, steroid use, etc.) to have such bad osteoporosis. In any event, celiac disease is highly suspected by my metabolic bone disorder endocrinologist. due to the fact that I've got high vitamin D and high parathyroid levels in my blood... She doesn't think it's due to my parathyroid being faulty... but all due to celiac disease. I took the Prometheus Lab Celiac Serology test last week and am waiting for the results. She actually advised me to continue eating gluten until I've had a biopsy, but after all of the reading, I've decided it was vital to stop ingesting toxic substances (gluten) just in case!!! So, I've been gluten free and have also lost weight EASILY!!!! I haven't been too overweight in my adulthood (althoug quite pudgy as a youth/teen). As an adult I ate very little and had a had time losing the 5 pounds I really should have lost!

I think something is up with gluten being removed from a diet and then being able to eat more normally and maintain a better, more healthy appropriate weight. I wonder how many others have lost weight (in a good way) after going gluten-free.

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    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
    • Sigh. I totally do love the packs of stretch pants at Costco though...
    • hey, i'm vegetarian and gluten free as well
      have you tried making any recipes with cashew nuts like cashew cheese or pasta sauce? they're really good, easy to make and an excellent way to get more protein/iron
      i can send you some of the easy recipes if you like  
    • Right, fistulas or fissures are usually associated with Crohns, but not celiac.  It is not impossible to have both conditions though.
    • Bravo for being strong enough to bring this topic up.  Depression, anxiety, and other mental or neurological issues are common in celiacs and those with NCGI.  Science is finally catching up to what many of us have already known to be true.   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/ I have suffered from anxiety and still have some neuropathies.  At first I blamed menopause (that alone can make you crazy), but my symptoms tend kick in after a Gluten exposure and improve as I heal.   You are not crazy!  Gluten can cause so many problems.  What other disease requires that the patient be in charge of "medicating" and caring for themselves?  Most of us after a diagnosis get a "Well, just avoid gluten.  Lucky you that there are so many restaurants that offer a gluten free menu!", speech from our doctors.  We never get time off from thinking about food, our next meal and will it be safe?  Our relationship with food changes dramatically and it can be exhausting.   We do need more resources and support from medical, but for now, at least this forum is helpful!    
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