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Feel Abnormal
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5 posts in this topic

I have only been recently been tested for celiac disease, but one of the signs my dr took as me having celiac disease was my startling weight GAIN! I gained 36 pounds in less than 3 months. After checking my thyroid (I do have Hypothyroidism) and seeing that being good, she checked my vitamin levels and saw I was deficient in everything. She then sent me to a GI, who I see next week.

I have gained a massive amount of weight in such a short time, and I am already overweight to begin with. Most people here say they were losing weight fast befoer diagnosed...I feel abnormal.

Now I am going to be struggling double to lose this weight. :(

Just ranting.

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Rant away. This is the place.

I think there are just as many overweight celiacs as there are underweight celiacs. some gain weight, some lose weight & some CAN'T gain weight & some CAN'T lose weight pre diagnosis. I think a lot depends too on the stage you're at with the celiac disease. Maybe. This stuff is weird & there's no one size fits all. But I can say you are NOT abnormal.

Now breathe.biggrin.gif

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Im in same boat. I've totally gained on gluten-free diet and don't feel energetic or satisfied from eating. I'm looking out for a diet that will work for me.

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I had unexplained weight gain no matter how hard I exercised before diagnosis. Still struggling to lose it 2 1/2 years later.

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I had unexplained weight gain no matter how hard I exercised before diagnosis. Still struggling to lose it 2 1/2 years later.

Thanks everyone.

I have always been a good 40-50 pounds over weight. Last year, I worked for the Post Office (temp) and walked between 8-9 hours a day, up and down stairs, carrying a 30lb bag, etc. I quickly lost 28 pounds in a few months. I left in Dec and by March, I had gained all 28, plus 5 more. In 3 months.

My Dr agreed that I shouldnt have gained that much..granted the amount of exercise changed, but my diet did not. I ate a little less since I wasn't using so much energy, if anything, but I didnt just sit around eating chips and stuff.

I do have a thyroid issue but my levels have been great.

So frustrating. I honestly thought food allergies happened to other people, not me :(

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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