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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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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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