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orphan annie

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orphan annie Newbie

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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celiac3270 Collaborator

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.

CindyK Rookie

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.

darlindeb25 Collaborator
;) 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
lpowmacback Rookie

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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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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