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janet93

No Weight Loss, Undiagnosed, Help!

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I have had strong symptoms of Celiacs for approximately 3 years; and growing up I have always been extremely pale, with sensitive skin (and no allergies) bruise/get nosebleeds easy, lethargy etc. The problem, is that if anything I have gained a fair amout of weight since the age o 18 (I am now 24). I have had my blood done twice and have been negative both times (but in the higher range). Is this common? Both my sister and grandfather are Celiacs who definitely experienced weight loss prior to diagnosis.

I am currently in the early days of a 1 month Gluten Free diet to test myself prior to scheduling a biopsy per my doctor's request as she does not want to perform an intrusive procedure until we are more certain.

Are there lots of other Celiacs out there who experienced no weight loss? Doctors in the past just brushed me off as this is one of the biggest symptoms.

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I have had strong symptoms of Celiacs for approximately 3 years; and growing up I have always been extremely pale, with sensitive skin (and no allergies) bruise/get nosebleeds easy, lethargy etc. The problem, is that if anything I have gained a fair amout of weight since the age o 18 (I am now 24). I have had my blood done twice and have been negative both times (but in the higher range). Is this common? Both my sister and grandfather are Celiacs who definitely experienced weight loss prior to diagnosis.

I am currently in the early days of a 1 month Gluten Free diet to test myself prior to scheduling a biopsy per my doctor's request as she does not want to perform an intrusive procedure until we are more certain.

Are there lots of other Celiacs out there who experienced no weight loss? Doctors in the past just brushed me off as this is one of the biggest symptoms.

I also was under the impression that weight loss was a prerequisite to being diagnosed with celiac, but I read somewhere that it isn't even such a prevalent symptom (i wish i remembered where i saw it!). I was diagnosed by my GI based on my experience, not with a biopsy, and I've never experienced the weight loss either. I strongly suspect that my parents both have celiac, and that my grandmother has it as well. If anything, they've all gained weight which just won't budge no matter what due to the disease. My parents will hopefully be checked later this month, so I'll update when I find out if they're positive for Celiac. Good luck with your biopsy!

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Not sure why your doctor has asked you to go gluten free PRIOR to doing a biopsy as doing so will render the test results inaccurate. Your body could completely heal in one month and your endoscopy will appear negative but you may actually have celiac. You would then need to resume eating gluten (even if it makes you sick) for 3-6 months to even attempt accurate testing. Sounds like your doctor is a bit uninformed.

I'm pretty sure I read somewhere that they are finding that more celiacs are overweight than underweight. Unfortunately, it is taught in med school that weight loss and malnutrition are the big indicators of celiac disease.

My son was diagnosed at age 6 and he is in the 95% for size and was in no way, underweight. I had a positive blood test and positive response to the diet and I have about 50 extra pounds on me . . .

So yes, it is possible.

Cara

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btw, i'm also always pale, and right when my celiac symptoms started I actually gained a few pounds, and just looked bloated all the time. If your doctor won't diagnose just because of the lack of that one symptom (which isn't present in all cases), me thinks it's time to find another doctor who is better versed in celiac symptoms, and all of its possible manifestations.

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I am by no means an expert, as I am still on the road to diagnosis....but I just wanted to say that decided to 'test my theory' and went gluten free for 1 week, and as a result had to go on a 6 week Gluten Challenge, and essentially eat as much gluten as I could stomach for 6 weeks before my doctor could then do the blood test.

Everything I have read here, and my own experience suggests that it is important to continue eating gluten until a diagnosis is reached.

Right now I am waiting on getting my blood test results, but am still having to eat gluten in case any further tests are needed, if I were to go gluten free now, I could end up having to do another gluten challenge, and delay my diagnosis even further if I need any more tests.

I hope you get some answers soon, good luck.

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I am by no means an expert, as I am still on the road to diagnosis....but I just wanted to say that decided to 'test my theory' and went gluten free for 1 week, and as a result had to go on a 6 week Gluten Challenge, and essentially eat as much gluten as I could stomach for 6 weeks before my doctor could then do the blood test.

Everything I have read here, and my own experience suggests that it is important to continue eating gluten until a diagnosis is reached.

Right now I am waiting on getting my blood test results, but am still having to eat gluten in case any further tests are needed, if I were to go gluten free now, I could end up having to do another gluten challenge, and delay my diagnosis even further if I need any more tests.

I hope you get some answers soon, good luck.

Such an important point!!!! Unfortunately, my GP told me to go off of gluten once my blood test came back negative. She meant well, and honestly believed that even though I tested negative, I could have an intolerance to gluten which would be helped with a gluten-free diet. Well, now that I'm off of it, I cant get retested to confirm my GI's diagnosis (she dx'd me just by hearing my symptoms, and how i reacted well to gluten-free), so it's a bit of a pain to deal with that now. Don't go off of gluten until you've done every single possible test that you think you will ever want to do with regard to gluten! It'll make it so much easier for you to get accurate results!

Good luck finding some answers!

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    • For the brown rice, it could be the fiber (assuming you mean whole grain rice, which still has husk on it). If I have been glutened recently, whole grain brown rice and other fibrous foods are not digested well by my GI tract. Because I get non-GI symptoms, I am quite sure that the cause is not gluten. You might stay away from whole grain rice for a bit, or transition slowly (mix white/whole grain in increasing proportions as tolerated). For pork, it is unlikely that the type of feed would have an influence on the gluten content of the meat. Gluten is not transferred into the muscle (meat) or eggs of animals. It stays in the GI tract. There could be some small chance of contamination from the GI tract during butchering. I don't know much about commercial butchering/abattoirs, but I think that this is heavily guarded against due to the risk of fecal contamination. Sometimes, the thing we think is making is sick is in fact not - sometimes it is something else that we do in association with that food. Perhaps there is a seasoning that you use with pork, or perhaps you use certain kitchen tools for pork that are contaminated. I used to always get sick when I cooked butternut squash. It was because I was using a hacksaw to cut them, which was contaminated with drywall (drywall contains wheat). If you are buying your meat from a small, independent butcher (where they bread/flour meat in-store), you might think about switching to buying big box grocery meat. At big box grocery stores, they just section up the meat that is pre-butchered. You could also be allergic to pork - this is rare, but some people are (especially those who are allergic to cats). Hope this helps.  
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      Brown rice, this could be a issues with CC, starches, fiber etc.  There have been major CC issues with grains and legumes in recent months. I suggest sticking to a safer brand like Lundenburg and or visually sorting your rice, and washing it before cooking it. Again it could also be a fiber issues or starches.

      Other thoughts some people bit by a lone star tick develop allergies to pork and or beef.

      Some people are just intolerant to certain foods, and we can develop many food sensitivities to just about anything with this disease. Often new or certain food intolerance can be linked to something we ate when we ate gluten and our body just has a associative issue that might go away in a few years. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Brown Rice and pork are meant to be gluten free yet they set me off. Pork I reckon is due to them eating cereals.  Brown rice I have no idea although white is fine . Does anyone else get set off by them or is my body just strange?
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