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Intro

weathertopmama

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weathertopmama Rookie
weathertopmama
Posted

Hi, I'm Amy. Nice to meet you! :)

Our story is long and convoluted and painful, but sadly typical, so I'll spare you the details ;) .

The short version is that I have celiac disease and at least 3 of our 4 sons have it, too. I think the fourth would have been diagnosed later if he'd continued on a regular diet. The older two showed no symptoms until they were over 6 years old, and the blood tests were the same for all.

We all eat gluten-free, even DH does at home. We've been gluten-free for about a year. I try really hard to put the tough stuff behind us and just be happy! The boys are doing really well now but we had some very hard times.

I'll admit the costs of gluten-free food are killing us! And I've accidentally glutened us all twice in the past month, after being successful for a really long time :rolleyes: .

Anyway I'm sure I'll tell more of our story as time goes by, I look forward to meeting you all!

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jennyj Collaborator
jennyj
Posted

Welcome. You will find this site a place of solace, understanding, and a good place to vent without being judged.

Lisa Mentor
Lisa
Posted

Hey Any:

Welcome, but won't spend too much time on that. Carriefaith, on this site has some wonderful gluten free recipies and they go on forever, many, many good things that are easy and good. Do a search on "recipies".

I haven't been feeling too well this week, so I will pass on to others.

Glad you found us, You will never meet a more informed, comforting place than here.

Lisa

dlp252 Apprentice
dlp252
Posted

Hi and Welcome!!!

plantime Contributor
plantime
Posted

Welcome to the board!

taz sharratt Enthusiast
taz sharratt
Posted

hi amy, nice to meet you to. welcome. you will find this site really helpfull.

flagbabyds Collaborator
flagbabyds
Posted

¡¡welcome!!

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weathertopmama Rookie
weathertopmama
Posted
  • Author
:) Thanks for the welcome! :D
Sarah8793 Enthusiast
Sarah8793
Posted

Welcome Amy! :)

I love this community. I am newly gluten free and addicted to this board. :rolleyes:

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  • Recent Activity

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      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      nothing has changed

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    5. asaT
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      nothing has changed

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  • Posts

    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      Is it gluten?

      By trents · Posted

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      nothing has changed

      By RMJ · Posted

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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