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Who Else Has It?


Elyse

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Elyse Newbie

Hi, my name is Elyse and I have 11 year old triplets. 2 boys and 1 girl. One of my sons, Joe, always had trouble focusing, was very picky with his eating habits, and always had stomach issues. Before this past Thanksgiving, I had noticed that the stomach problems were getting worse, and when he had to go, he had to go right then and there or else... We went to see the pediatrician who suggested that before we went through invasive testing, just keep his gluten intake to the bare minimum. I did this, and almost immediately he was more focused, he became involved in conversations with everyone, and he had no more "accidents". This was fine for about 3-4 months, and now it seems that he is having the problems again. Do I see my regular pediatrician, gastroenterologist, allergist? I'm not sure, and my pediatrician is really no help. Can someone point me in the right direction. Just to let you know, my other two kids do not seem to have this problem and my husband and I do not have this problem, so we can't figure out where it developed from. I was told that it was hereditary. Thanks so much for your input.


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Guest aramgard

Celiac disease is hereditary and you may carry the gene but not have the disease, unless it is triggered. If you have only been keeping his gluten to a minimum, you may try cutting out gluten altogether. This is the only way to control gluten intolerance. One way to tell if the problem is really Celiac, is to have the genetic testing, which costs about $160 from enterolab without a doctors order. If he truly has Celiac disease the only way to prevent future problems is to maintain a totally gluten free diet for life. If he has been on restricted gluten for some time he may or may not register on a Celiac panel (blood testing). But at least the gene test would tell you if the disease is in the family. Many people carry the gene. At least 1 in 150-200 people in the U.S. Try reading up on Celiac disease on Celiac.com and then turn to enterolab.com. Dr. Fine, who runs this web site, is a Celiac and has developed testing which is cheaper than most of the lab tests in the U.S. Good luck with your hunt for health. Shirley

mom of 5 celiac Rookie

Elyse,

I have 3 kids also and they all have celiac. My husband was first diagnosed with it then as I read on it I saw that the kids were having symptoms. They are all colleg kids and having a hard time dealing with the diet. I found out I have it too. SO I think the whole world has it and just hasn't been dianosed.

I say you need to cut out all gluten Karne

Guest aramgard

I also believe all of my three children have Celiac, but try to convince them. At least the oldest one is really unconvinced and I think she has had it since infancy. Please read all that you can about this disease and take appropriate moves to keep a gluten free diet, eventually your child will grow into a healthier adult. Shirley

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    • sillyac58
      Thanks so much Scott. I would be incredibly grateful to the gluten gods if eliminating oats was the magic cure. In the meantime, it's nice to have moral support! 
    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      alright thank your help! 🤍
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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