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Turner Syndrome

draeko

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draeko Apprentice
draeko
Posted

Hi Everyone,

My name is Melanie and I am new to this board. I have just been diagnosed with Celiac a couple of weeks ago, after many years of feeling unwell. I have 2 sons but loss a daughter 5 1/2 months in utero due to Turner syndrome. I am wondering if there is a link there? Does anyone have any information.

I also have a feeling that my 5 year old and my 2 year old have Celiac. The oldest is very tired all the time and feels worse after eating. My youngest is my main concern he has diarrhea since June and has somekind of skin problems, kinda looks like eczema. Both of their stomachs are very distended.

I have asked a couple of doctors to test them for Celiac but they both refused. I made yet another appointment with a doctor on December 13th and I am hoping to convince her to test my boys. What test would they perform? I read about blood tests in young children are inaccurate.

:D Thanks everyone for all your help..Looks like we have a good support group here!

Melanie

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chrissy Collaborator
chrissy
Posted

i wonder why some doctors refuse to run tests that parents request---kind of irritating. the fact that celiac is genetic is reason enought to do the test, symptoms or not. i tested all of my kids when we suspected one of them had celiac and we discovered that 2 more of them had it also.

taweavmo3 Enthusiast
taweavmo3
Posted

I tried posting earlier, but my 2 year old kept pushing buttons! Argh. I wanted to say welcome to the board. And I am so sorry for the loss of your daughter, I can't imagine going through something like that. I would keep searching for a doctor who will test your two boys. It may take a while, we've been through several pediatricians. I tried a new one this month after doing ALOT of asking around, and I think we have finally found a keeper. He automatically asked if everyone in the family had been tested, he didn't question if they had symptoms, failure to thrive, etc. He was also very thorough in wanting to make sure Emmie's hormones were in check since she is still not on the growth chart yet...and also mentioned that he wanted to follow up with her every 4 months to make sure she is staying healthy and growing well.

This guy was 100X more thorough than even our pediatric GI. I was blown away...he also gave me referrals for the specialists I had been fighting with our previous ped for (developmental ped and urologist). I'm sure he thought I was a blubbering nutcase b/c I wouldn't stop saying thank you and I was pretty close to tears.

Anyway, I'm rambling now! It really shouldn't be such a battle to get your boys tested, especially with you being positive yourself. I am lucky though in that we live close to Dallas, and have alot of specialists to choose from. If your choices are limited, keep fighting to get them tested, and make sure they do the right test. I can't remember the exact tests to ask for, but I know there are others on here who do!

Good luck to you!

momothree Apprentice
momothree
Posted

Greetings! I don't really know if this helps at all, but I have a friend who has a daughter with Turner Syndrome. Apparently, girls with Turner's are more likely to develop Celiac, and she has to have her daughter tested annually. Just a little info that you may or may not already know. :)

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