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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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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
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