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Celiac With Siblings


catfish

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catfish Apprentice

My next oldest sister has IBS symptoms similar to my own, younger brother gets terrible migraines, and my oldest sister can't gain weight plus I just found out from my mother that my oldest sister was taken of wheat when she was an infant because she had a bad reaction to it, but then the reaction went away so they put her back on it again. Add to this the fact that her daughter has seizures and they don't know why! I think all my siblings should get checked for Celiac since I had positive blood tests and the new diet seems to be showing some improvement, but my siblings all seem to want to stick their heads in the sand and say, "Not me, I can't have that!"

Now I might be wrong, but isn't gluten intolerance always a lifelong condition? Why would the doctors suggest putting my sister back on wheat again? Just because the Diarrhea went away doesn't mean she isn't still sensitive, right? Maybe that was the state of medical knowledge back then, this would have been oh, 35-40 years ago.

So anyway, I wish that I could convince them to get a blood test or something, but I think the prospect of facing a lifestyle change like that is too much for them to face. I guess when their symptoms get severe enough maybe they'll get checked out! But I was wondering, I know that Celiac is a genetic thing but does anybody know the odds for a sibling of a Celiac to be a Celiac? Maybe hard numbers will help convince them to get checked out! :unsure:


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lovegrov Collaborator

Off the top of my head the odds of any first-degree relative having it are 1 in 33, but it becomes much, much more likely if a relative has symptoms. Both of my siblings got tested (negative) but then they had seen how suddenly I had gotten deathly ill. My father, with no obvious symptoms at all, was positive.

richard

MLO Newbie

Hello,

My Daughter was confirmed via endoscopy with celiac in March. I begged my brother to have his daughter tested because she also had the same symtoms. I BEGGED my brother. I BEGGED my brother. My Niece was also confirmed in May with Celiac. I have came to the conclusion that you can only do what you can do as my mom and dad refuse to be tested. I come from a big family and my sisters do not want to have anything to do with even the thought of having Celiac. So I have came to the conclusion that life is to short to worry about anybody else as their health depends on their own decisions.

MLO

Shamrock Newbie

My brother was diagnosed about 45 years ago and was told he would "outgrow" celiac back then. I was told many years ago that I would have to watch for it in myself and my children but so little was known back then it took 4 years and Child Protective Service investigating my mother as they thought she was not feeding him, before they found a doctor who made the Celiac connection. None of us siblings were tested then and after many years of wondering I have finally decided to be tested myself. I can say that what took so long was the thought of never eating bread or pizza again- I thought the face of celiac was my brother and I couldn't have what he had. I am overweight the pictures of him as a child looked like something from a third world country. A little knowledge I found after researching the Hashimoto's that I had made me realize that I most likely didn't have IBS or a very 'sensitive' stomach after all.

I have been gluten-free for a month now and feel great- unfortunately I will have to go back to be tested but no matter what I am sure I have found my answer. I haven't had a migraine, stomach ache, ect. in a few weeks now. I just wish my brother or my mother were alive to talk this over with, my father doesnt' remember it all but he and my husband really think I should be tested so that I will not be tempted to say well just this little bit won't hurt.

bonnie

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      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
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      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
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