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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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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
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