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I have ALWAYS had very bad flatulence and prone to diarrhea. About 3 years ago, I started having 6-8 floating bowel movements/day, diahrea, upset stomachs etc. A Celiac friend said it could be celiac, so I saw my GP who referred me to a GI specialist. My appointment was several months down the road, so she suggested I start following a gluten-free diet. I followed it for almost a year. In that time, my BM's got much less frequent and more 'normal' in other ways shall we say. I was still learning about the diet, so I don't believe I was completely gluten-free, but the more I restricted the intake, the more normal my BM's got.

When I finally saw the GI, she ordered all the blood tests, a gastroscopy,(which took place after a 6-week gluten challenge) and a colonoscopy. They all appeared normal. My family history includes: both a mother and father who had/have problems with constipation, diarrhea, EXTREME flatulence, hemerrhoids, and problems swallowing. One brother is borderline diabetes, one sister has rheumatoid arthritis, and lupus. She deals with severe constipation which she believes is totally due to her medication. My other sister has fibromyalgia. My other brother suffers from depression.

Both my children suffered from diarrhea when they were infants. My daughter was so underweight till the age of 12 that the dr. sent us to a dietitian to try to put some weight on her. She also now has BMs almost every time she goes and says she feels like there's a 'ball of dough' in her stomach when she eats certain glutens ie. pizza. She has started on a gluten-free diet and says she feels better and has more energy.

My question is this: Should I bother continuing to get a positive result from the GI's tests, or should we all just eat gluten-free and lay the diagnosis to rest? If the answer is yes to pursuing the + test results, why?

I appreciate your feedback and experience in this matter.

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Hi spchenier!!!

It sounds like Celiac/gluten sensitivity to me. To me improving on a gluten-free diet is a test but I know some others will disagree. The reason I say this is because you can have all the blood-work and biopsies out there but it does not always register positive or show the damage therefore our doctors quickly dismiss us. My GI doctor finally told me that if I wanted to go gluten-free to see if I improved that would be ok, since he had done a full work up on me and could only come up with IBS.

There is a test out there that is more sensitive than blood but not widely accepted my doctors, it is a stool panel test through Dr. Kenneth Fine at Enterolab This is how I was diagnosed, it is non-invasive, very simple and you get the results back quickly, usually within a couple of weeks.

I hope this helps you out

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I am currently struggling with the same issue. My 22 month old daughter is "most likely" Celiac. We started her on the gluten free diet prior to getting the tests done too. Her tests showed IgA deficiency so this made her tests negative. However, since IgA deficiency occurs most commonly in people with celiac or diabetes type 1 her GI was able to tell us with a high degree of certainty (based on other factors as well) that our daughter has celiac disease but can't put the "official diagnosis" on record until the endoscopy is done. The GI agreed that doing a gluten challenge for the sake of the endoscopy at this time was not wise as our daughter was seriously underweight and had finally been showing improvement.

Then my husband and I were tested and all our results came back negative (also still waiting on results for our 4 year old daughter). I am pretty certain at least one of us carries the gene if not both of us. I have many of the classic celiac disease signs (short stature, digestive problems, recurrent miscarriages, history of allergies and family history of gastro & autoimmune problems) and my husband has a nephew with Autism and a mother with Fibromyalgia. I was gluten free along with our youngest daughter and feeling much better but decided to get tested and gluten challenged myself. I'm feeling AWFUL... all for negative results (processed by Quest which I've now learned is not welltrained at processing these tests). Now I wonder if I should continue to pursue a positive result while I'm still ingesting gluten. I read a lot on this board about EnteroLabs and people getting better reliability with these tests. I'm not sure I am ready to pay out of pocket to learn that I should avoid something I know makes me feel bad anyway. I might opt to order just the gene test figuring if the gene is there that will be enough proof for me. As for my daughter, I don't plan to gluten challenge her ever. I know I did it to test but I can't see the rationale personally. She was very sick and I do not want to do her body harm for the sake of proving her villi is flattened by gluten. Her GI is very understanding and I'm sure will help us regardless of our choice to forego the endoscopy.

It is unfortunate that we should need to go to these extremes to get PROOF. I have been trying to ask myself what is my own motivation behind trying to get the PROOF. I think it has more to do with trying to boost my self-control (a recovering cookie addict here) and proving to my family that it is not in my head (and that they too could improve their own health) than actually having it medically documented. I've been doing a lot of research on the Paleolithic Diet and the foods our bodies are designed to digest. From what I've read, I am now convinced that grains (amongst other foods: potatoes, beans, and dairy) are not good for anyone regardless of an autoimmune response to them. My daughter is doing so well on this diet. It is very limiting (only meats, fish, vegetables, and fruit) but very satisfying once you get used to it. When I stopped trying to substitute the baked goodies with gluten free alternatives and took all grains of her menu her health improved drastically and she is now gaining weight steadily. I am already a bit panicked about when she is old enough for school. Right now she doesn't remember what a cookie tastes like and is not tempted with sitting next to someone eating one but in a class setting when there are parties, etc.... I am so hoping people will be more enlightened about the dangers of grains before she goes to school. My 4yr old eats gluten free at home but she does get the goodies at school (UGHHH). I feel mixed about what kind of results I'd like to see her get. While I don't want her to be celiac disease, again it feels no one will take my concerns seriously in the schools or medical offices otherwise. I would like her to be gluten free regardless of her diagnosis.

Oh this crazy world. Hopefully, the Low carb craze is here to stay and people will start asking WHY these foods are so bad for you and concern themselves more with TRUE health than with simply losing weight. And maybe..just maybe...we as adults will begin to question why we are still feeding our children foods that are causing adults to become seriously ill and overweight. Why are we setting them up like this? It'll be a long fight though...these foods are so addictive! Sorry for ranting...

Traci

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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