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Do I Try To Educate Ped Gi Or Just Move On?
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My eight year old has been gluten free for 3.5 weeks. She feels better than she has in a very long time. No stomach aches and she is happy again.

She has not been diagnosed with Celiac Disease (blood test and biopsy negative) but through Enterolab lab we got the following results last month:

Fecal Anti-gliadin IgA 163 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 58 Units (Normal Range is less than 10 Units)

DQ7 and DQ9

At our last GI appointment in January, he talked about how stress can cause stomach aches and that it is common for children at this age to have stomach aches. He did not give her a physical exam (did not press on her belly or anything). I told him she had been constipated. Within three days of that appointment, she was in some of the worst pain of her life. I thought seriously about taking her to the hospital. The pain came and went over several days so I took her to her local pediatrician who felt her belly and said she was very constipated and suggested that we do an enema that day. She was so severely constipated that two weeks after her GI appointment and a week on miralax, her constipation still showed up on her abdominal CT scan (everything else was normal).

We are suppose to have another Pediatric GI appointment in a couple of months. The last conversation I had with this Doctor, he told me it was "functional abdominal pain" and to IGNORE HER PAIN. This after she has been diagnosed with idiopathic growth hormone deficiency, pancreatic insufficiency (fat malabsorption), constipation, acid reflux, severe lactose intolerance, and failure to thrive.

Part of me wants to take in some research articles on gluten sensitivity and her test results and talk about how well she is doing going gluten free. Maybe it would help other children that he treats. The other part of me NEVER wants to see him again.

What should I do?

Thanks,

Kristy

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I am not sure about the genes. My celiac is DQ2/DQ8. Not sure about the others. The blood tests are wayyy high though. Have you had her thryoid checked? Constipation is a big sign of that, too. My daughter had thryoid problems and celiac. I would ask for the anti-endomysial antibody test done. It will either say "Positive" or "negative". That antibody test is supposed to be 99% sure of celiac. Scoping would be up to you. I scoped my daughter to make sure when hers was positive and she had blunting. I do not know much about enterlab but my daughter had 2 blood tests within 2 weeks of each other (no diet change) One showed her Ttg 164 and one showed 7. That's a big gap! My pediatrian ran all the blood work. Just ask for a lab that tests for the EMA (antiendomysial antibody) because not all labs are able to do that.

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I am not sure about the genes. My celiac is DQ2/DQ8. Not sure about the others. The blood tests are wayyy high though. Have you had her thryoid checked? Constipation is a big sign of that, too. My daughter had thryoid problems and celiac. I would ask for the anti-endomysial antibody test done. It will either say "Positive" or "negative". That antibody test is supposed to be 99% sure of celiac. Scoping would be up to you. I scoped my daughter to make sure when hers was positive and she had blunting. I do not know much about enterlab but my daughter had 2 blood tests within 2 weeks of each other (no diet change) One showed her Ttg 164 and one showed 7. That's a big gap! My pediatrian ran all the blood work. Just ask for a lab that tests for the EMA (antiendomysial antibody) because not all labs are able to do that.

The test results were stool test for gluten sensitivity from Enterolab. Her blood work and biopsy for celiac disease were negative. She has been gluten free for 3.5 weeks so I am not planning to put her back on gluten for further testing. I am asking if I should try to talk to him about gluten sensitivity or just move on.

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If you decide to try to educate this doc, be sure the info you give him is from medical journals or one of the Medical Celiac Centers like Chicago, Maryland, Columbia or Mayo. Don't give him info from places that are trying to sell a product like Enterolabs or a chiropracter with a big internet practice or posts on here. He will instantly dismiss those as nonsense. Even if the info is good.

Even if you decide not to see him again, you could mail or email him some info.

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If you decide to try to educate this doc, be sure the info you give him is from medical journals or one of the Medical Celiac Centers like Chicago, Maryland, Columbia or Mayo. Don't give him info from places that are trying to sell a product like Enterolabs or a chiropracter with a big internet practice or posts on here. He will instantly dismiss those as nonsense. Even if the info is good.

Even if you decide not to see him again, you could mail or email him some info.

The article I had planned to take is:

Sapone et al.: Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine 2012 10:13.

Abstract

A decade ago celiac disease was considered extremely rare outside Europe and, therefore, was almost completely

ignored by health care professionals. In only 10 years, key milestones have moved celiac disease from obscurity

into the popular spotlight worldwide. Now we are observing another interesting phenomenon that is generating

great confusion among health care professionals. The number of individuals embracing a gluten-free diet (GFD)

appears much higher than the projected number of celiac disease patients, fueling a global market of gluten-free

products approaching $2.5 billion (US) in global sales in 2010. This trend is supported by the notion that, along

with celiac disease, other conditions related to the ingestion of gluten have emerged as health care concerns. This

review will summarize our current knowledge about the three main forms of gluten reactions: allergic (wheat

allergy), autoimmune (celiac disease, dermatitis herpetiformis and gluten ataxia) and possibly immune-mediated

(gluten sensitivity), and also outline pathogenic, clinical and epidemiological differences and propose new

nomenclature and classifications.

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Hi there,

I'm not sure where you live, but if you are near LA, consider seeing Dr. Pietzak at Children's Hospital in Los Angeles. She is a Ped GI AND Celiac researcher. I personally believe the researchers get it more than anyone -- they thrive on figuring out this disease! We don't live in LA and have found it worth the long trips to see her.

In contrast to the experience you list above...Dr. Pietzak felt both our girls' tummies. Our girls are SKINNY (below the growth curves) and she believes they were both bloated and gassy (things we did not catch as parents). She could tap on the girls' bellies and actually hear the hollowness where gas was trapped.

Further, I was opposed to doing endoscopies, but I trust Dr. P so much that we went ahead. One of the girls has a red lesion on her stomach lining = gastritis. We never would have known that piece of the puzzle without having scoped. I'm still not a fan, but it is tolerable in the interest of having a clear picture of a kid's health.

In terms of educating doctors, one part of me believes it's important for the lives of children beyond our own. AND I am a BIG fan of never seeing a bad doctor again.

I'm not in a dissimilar position--our pediatrician refused to test for Celiac...despite LOTS of symptoms...and both our girls are about to be formally diagnosed Celiac. I'm still furious! Our pediatrician could have caught this when the girls were two years old...now they are 5.5 years old. I still debate if we'll ever go back to see him or whether we'll go back and I'll be huffy about the whole thing or whether I can find it in myself to be the better person and gently tell him what has transpired since I got the allergist to do the testing and found a Celiac researcher/ped GI to do what he failed to do...

All in all, I hope so much you can find an excellent Pediatric GI who knows more than you do about Celiac (that was my goal...not to be smarter than my doctor on this!). If you're willing to share your location, I'll try to figure out who might be an expert near you. Alternatively, look at the doctors on the advisory boards of the various Celiac non-profits.

Thinking of you!

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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