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I'm A Weird Celiac - Gained Weight?


jparsick84

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Kit.DaMommy Rookie

Oh seeing all these posts made me feel so much better. After my first daughter I lost the weight just fine, but my second daughter was premie and nobody knew why and now my doctor says the celiac is probably why. Anyways after I had her I couldn't lose it like I did before, I actually gained. I am currently 55lbs overweight, I just went gluten free monday, hopefully I can finally get back into my cute pants. lol. Thank you all.

Love to all,

be blessed

  • 3 weeks later...

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ATC-BS-MS Apprentice
I'm already a bit of an abnormality, as my Celiac symptoms were always strictly skin-related (DH like you wouldn't believe!). I was VERY lucky to not have the gastro symptoms so common with most Celiacs.

In relation to this, I actually GAINED 50 pounds before they diagnosed me. (We realized there was a problem when I was exercising 6 hours a week and still gaining weight). I think it's because I was always hungry, so I just kept eating, and I must have been getting enough of the good stuff that I was absorbing at least some of the food I was eating. Also, my symptoms were present for only about a year before diagnosis so I don't think my intestines were too badly damaged.

So my question is, is there anyone else out there who actually gained weight? My doctor was really confused by the weight gain being related to Celiac, but since going gluten-free, I haven't gained any more weight. Just knowing there are other "Celiac Weirdos" out there would be really great as I start to try to lose this weight...Thanks. :unsure:

I am also a wierd case of Celiac and casein sensitivity. I gained about 15 pounds FAST! This was very concerning to me since I am small framed and only 5'2". I was getting so frustrated and my doctor tried to put me on a 1000 calorie diet for diabetics. This was not good since I could barely function.

I had the same problem as you with feeling hungry all the time, but no absorption. I had diarrehea constantly but gained the weight.

I encourage you to keep eating healthy and starting/continuing to exercise...the weight will come off after your body stays in a steady state. I have successfully lost about 10 pounds of the weight and I am sure you will be very successful too!!

If you ever want tips or suggestions about exercising, I have lots of websites and workouts.

Malficient Newbie

I too gained weight after going gluten free (I've always been a bit overweight). I tracked everything I ate for a full month, and showed it to my dr. She realized I was eating too many carbs and not enough lean protein (I'm also mostly vegetarian). I was eating risotto at least a couple days a week, and brown rice pasta dishes, and thai dishes with rice or cellophane noodles (and my triglyercides were way too high). So I cut back, focused more on veggie dishes and leaner protein like tofu and fish, and have gone down down a pants size. So that might be one angle to look at. Just a suggestion!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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