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THernandez

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THernandez Newbie
THernandez
Posted

Hi! I'm new to the forums here, but not new to the site. I've used the resources here for the past 3-1/2 years. Well, almost 4 now. I have three kids, a daughter, aged 10, and twin boys aged 7. All have been diagnosed with celiac disease.

One of my sons was 3 when he began having symptoms. Subtle at first, occasional vomiting, stomach aches, etc. The vomiting became more common, he lost considerable weight, to the point that he was just skin and bones. At the age of 3-1/2, he weighed 25 pounds, then 24, then 23, and finally 22.5 when we finally got our diagnosis.

Our pediatrician ran test after test and could find nothing wrong with him and even told me that he was now at least in a healthy weight range whereas before, he'd been trending towards being heavy. He was a toddler! Give me a break, all toddlers are a bit chubby. I found a new pediatrician but did my own research. The first time I met with her, I asked if it could be celiac and she agreed to test him. Because of the genetic component, she recommended we have his identical twin brother tested too, who I didn't even realize had symptoms because they were mild by comparison. when both tested positive, she recommended my daughter be tested too and that also came back positive.

So, three kids with celiac and neither my husband nor I have it and to our knowledge, no one in either of our families does either.

While we've been dealing with this a lot longer than it looks like some of you have, we really don't know that much about it. We've been unimpressed with the medical professionals we've dealt with here locally. I mean, their ped has been great, but she clearly doesn't really know much about it and the experts we met with at Children's Hospital were so unhelpful, I never went back.

I know all three are doing really well now, but I also feel like we need to learn more about the disease and long-term issues to be made aware of.

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Dixiebell Contributor
Dixiebell
Posted

Hi and Welcome! I have learned a lot of valuable information here. Have all of your immediate family members been tested for celiac? I wish my family would all get tested, they are just so stubborn. Have you tried a R.O.C.K group? (raising our celiac kids) Just fire away with questions, someone will know the answer.

THernandez Newbie
THernandez
Posted
  • Author

Hi and Welcome! I have learned a lot of valuable information here. Have all of your immediate family members been tested for celiac? I wish my family would all get tested, they are just so stubborn. Have you tried a R.O.C.K group? (raising our celiac kids) Just fire away with questions, someone will know the answer.

Thanks for the welcome! I feel like I should have been posting here for years; I'd be way ahead of where I am if I had.

No, I can't get them to get tested. It's driving me nuts. Of course they think I'm the Celiac Tyrant because anytime anyone even has a slight symptom that my be related to celiac, I dive into that. They all just roll their eyes at me.

I have not tried a ROCK group. Are they like local support groups or an online thing? Might be cool to meet in person. When my twins were little, I'm not sure I would have made it without the Mothers of Twins Club,

psawyer Proficient
psawyer
Posted

Click here to read an article about ROCK.

After the article there is a list of local chapters. The contact info is probably out of date due to the age of the article.

THernandez Newbie
THernandez
Posted
  • Author

Click here to read an article about ROCK.

After the article there is a list of local chapters. The contact info is probably out of date due to the age of the article.

Thanks!

THernandez Newbie
THernandez
Posted
  • Author

I checked it out and it turns out the founder of ROCK lives in my area. That bodes well for an active local chapter!

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    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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