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Lots Of Symptoms, But Negative Diagnosis
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I have a daughter, almost 13, who is always tired. Always. She also has enamel spots on her teeth, gets canker sores all the time, seems to have low bone density with as many issues as she's had, and has been declared "failure to thrive". She only weighs 76lbs. She also gets headaches all the time. Her doctor suggested getting tested for Celiac. The blood test revealed an iGa deficiency, which threw the test results out the window, I guess. We then saw a GI doctor. She had an endoscopy with biopsies this past Tuesday. The results show no Celiac Disease. She did, however, come out of it with pneomonia! It has been a horrible experience!!! My gut tells me I should still see a dietician. I have 2 othe younger daughters... one is 11, and the other is 8. The 11yr. old has the typical gastrointestinal issues and was told she has IBS. We had blood work done on her, but are still waiting for results. My 8yr. old has headaches almost nightly, stomachaches, and yellow teeth. She also seems to be getting more ADHD by the day. Her blood work revealed the same iGa deficiency as my oldest. What do I do!?!? I do not want to go through any more endoscopys based on my oldest daughter's horrible experience!!! Plus, she got a negative result. They all have symptoms!!! Am I crazy!!

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Call both doctors and get the test results. The IgA antibody tests may not be helpful, but the IgG ones can still tell you some useful information. You can also check the endoscopy report to find out if there *was* something to find but not "enough" for the GI to diagnose celiac.

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I agree you absolutely need written copies of all test results; maybe he did not do any IgG tests? Is there any family history of either GI problems or autoimmune diseases like thyroid, arthritis, diabetes, etc.?

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I would also have you younger children tested. IBS is a symptom and not a cause, the cause could be celiac. ADHD is often food linked too. What's Eating Your Child is a great book that discusses how diet affects behaviour; you might want to take a look at it.

My three boys all tested negative for celiac but like your daughters, they had varying degrees of gluten intolerance symptoms. We decided to make them gluten-free along with me because eating gluten-free can't hurt (as long as you don't replace wheat with sugar laden gluten-free substitutes at every meal), it could help them feel better, plus it was easier if everyone ate gluten-free in the house from a food prep point of view.

Even though my boys had negative tests, two of them have shown real health and behaviour improvements on the gluten-free diet. My oldest is putting on a bit of weight and growing, has less headaches and stomach aches, and his mood and concentration has really improved. My youngest used to have to visit the bathroom for bm's 5 to 8 times a day and now he's down to 1-3 and has grown a LOT.

I mention all of that to encourage you to try the gluten-free (and possible dairy-free) diet for a few months once your daughters' testing is done regardless of the outcome. Non-celiac Gluten Intolerance is much more common that celac is, and could be causing their health problems.

Best wishes.

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Ok, I will get the test results from the doctors. There is history of Barrott's Esophogus, colon cancer, Crohns, Diabetes, GERD, Diverticulitis.........as far as Celiac Disease goes, no one in our families has a diagnosis. (doesn't mean it's not there)

Thank you!

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I would also have you younger children tested. IBS is a symptom and not a cause, the cause could be celiac. ADHD is often food linked too. What's Eating Your Child is a great book that discusses how diet affects behaviour; you might want to take a look at it.

My three boys all tested negative for celiac but like your daughters, they had varying degrees of gluten intolerance symptoms. We decided to make them gluten-free along with me because eating gluten-free can't hurt (as long as you don't replace wheat with sugar laden gluten-free substitutes at every meal), it could help them feel better, plus it was easier if everyone ate gluten-free in the house from a food prep point of view.

Even though my boys had negative tests, two of them have shown real health and behaviour improvements on the gluten-free diet. My oldest is putting on a bit of weight and growing, has less headaches and stomach aches, and his mood and concentration has really improved. My youngest used to have to visit the bathroom for bm's 5 to 8 times a day and now he's down to 1-3 and has grown a LOT.

I mention all of that to encourage you to try the gluten-free (and possible dairy-free) diet for a few months once your daughters' testing is done regardless of the outcome. Non-celiac Gluten Intolerance is much more common that celac is, and could be causing their health problems.

Best wishes.

Thank you! That's what I think is going to happen....waiting to talk to regular pediatrician tomorrow

Peg

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Have you thought about genetic testing? It might not get a dx, but it can give a clue, as it were. Its also possible that NCGI (non-celiac gluten intolerence) can be causing this too.

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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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