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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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    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      Yes, I wondered about the units as well. That large number sure looked more like what we're used to seeing in connection with total IGA scores rather than TTG-IGA. The total IGA test is given to determine if you are IGA deficient. In the case of IGA deficiency, other IGA tests will b skewed and their scores cannot be trusted. Elevated total IGA can point to other health issues, some of them potentially serious, or it can mean nothing. But it doesn't look like you have celiac disease.
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      ttg iga high (646 mg/dl) other results are normal

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      So, since total iga 646, was high ,  was tTg iga even tested? It is not uncommon to test negative for antibodies and even biopsies to still have Celiac Disease.  Many on this forum have gone 10 years testing negative and surviving multiple misdiagnoses before finally being diagnosed as celiac. If trial GFD after all the negative tests are concluded brings improvement, will you continue to eat gluten and suffering since the doctor says you are not sick? Your list of symptoms, mostly unrelated to each other, certainly fits the pattern of celiac disease.  Do you really have nine different diseases, all with cause unknown?  
    • Wheatwacked
      Fiber Supplement

      By Wheatwacked · Posted

      If you don't like prunes, Figs are rich in fiber, with 3-5 dried figs providing about 5 grams.
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      edited after your post: "one cup of canned prune juice has 707 mg of potassium, while half a cup of dried prunes has 635 mg... whole prunes provide more fiber and fewer calories per serving." - google  When I complained of constipation due to my BP meds my doctor recommened prune juice without hesitation,  When I bother to eat Prunes or plums it works.   I think the fruit is better for you than the juice for addition nutrients.
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      Thanks, I do include chia seeds and ground flax seed in my diet to help as well but on days that I'm not close to my target of 30 grams of fiber, I would add the Benefiber. My IBS-C was much better with both natural foods and the supplement so I will continue to search for another natural supplement that is not based on wheat to have when needed. Thanks 
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