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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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    • Oliverg
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      By Oliverg · Posted

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
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      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
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      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
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