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BethSLP

Gi Who Is Supposedly An Expert Dismisses Symptoms

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Has anyone else seen a GI that they researched online to be sure was knowledgeable about celiac only to get the run around on their symptoms and refuse to be tested?

I went to one of the medical advisors for the Houston Celiac support group. I thought I did my due diligence. He told me that I "didn't fit the profile" because I am overweight and constipated (alternating with diarrhea) and most celiacs are wasting away and can't keep weight on. I knew, of course, this was not true, but in the absence of proof of my illness it feels hard to argue with the doctor. He insisted on me taking fiber supplements which only made me feel horrific.

My plan initially was to try his way and come back for my follow up and report that it hadn't helped. I was so miserable and the more I thought about it, the more irritated I got. I went to a naturopath because conventional medicine had failed me.

Why is it that even those who are endorsed by celiac groups are still sticking with such an archaic idea about celiac?

So now I have cyrex results that show severe intolerance, and I feel somewhat vindicated but also robbed. Because now I can't get the traditional tests if I want them without reglutenizing myself.

I hate that this is so complicated. And when I read on here that people are getting rejected by insurance companies, it makes me further question the importance of trying to figure out definitively if I have celiac or not.

Where do we turn when even the experts who should know better don't listen??

<end rant>

XOXO

B

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I find that to be the case even with the best of the best. I always say that you need to go in armed with information - so if he said that to you, you mention the medical sudy from (whatever year) that says the opposite. He can argue with you - a layperson, but he cannot argue with medical science.

I had this very thing with my kids Paed GI - best of the best, but when we went in he said

"nothing wrong, toddler diarrhea" etc etc. I brought up his own medical study that stated that it was possible that certain presentations were due to gluten, and he kept us on as patients (I am under no illusion that he would have discharged us that day had I not done that) and a year later - he said to me "you were right, there is something wrong" A year later!!!! :rolleyes:

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How long have you been gluten free?

Stupid doctors. Had my son's pediatrician just about deny my request for a celiac blood test because he was just having muscle pain and not digestive issues. She said "well, he's not having stomach pain or diarrhea so lets look at other things first." Luckily she agree to do the blood test and he was positive on it.

The thing is with insurance companies denying because a person has the diagnosis of celiac ....for you not getting that diagnosis would be a good thing then right? If you know gluten is an issue for you and have given it up then move on and live your life a lot healthier because you took the ball in your court.

Good luck!

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My kid's ped refused to test them after I was diagnosed too. I was livid! We were seeing an allergist/immunologist(at my insistance and good thing too) and they had no problem ordering the tests for me. They were both negative. Fast forward two years and my youngest son was retested and it was positive. Looking back I think my youngest has been celiac since a baby and my oldest's symptoms as a toddler were gluten related too. Oldest son is still negative on blood work and was negative on biopsy. He is gluten free now also and it has made a huge difference. I'm contimplating getting the genetic testing done on them when I have the money. My insurance won't pay for genitic testing anyway so I'll see if I can order the tests private.

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