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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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  • Posts

    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Doctors and Celiac.com

      By Scott Adams · Posted

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

      By MauraBue · Posted

      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
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