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Celiac Disease & Ambitions


Ms. Skinny Chic

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Ms. Skinny Chic Explorer

Celiac Disease has been the biggest struggle of my life.

I never had to go through a really big struggle at all in my life.

I have had to delay my educational goals and other ambitions...

I was always so sick. I was deathly ill ( I really used to love pasta& it was killing me)

I couldn't walk for sometime, I had daily fainting spells, suffered seizures from gluten and so much more..

It seems like the spectrum of medical specialist that I seen were endless.

That seems something that anyone who has a mystery illness shares...at least according to mystery diagnosis on TLC

My ambitions were replaced with seeking new medical professionals and running endless test.( SPinal taps, autoimmune disease test and more)

I am probaly one of the most tested people in history... LOL

Those events make your stronger, I think.

My health really used to suck, it is improving currently.

My medical labs look better, than they have iin a really long time.

Some people think that it is only a allergy or a small thing..

Celiac really affected me on so many levels...

It has been a long road for me... I think things will be back to normal in the near future.

I wonder how many of you have had to let go of certain goals???

Your health circumstances prevented you from achieving certain things...

It seems like sometimes you want to do so many things, but realistically your body isn't ready yet.


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Mrs. Smith Explorer

I know how you feel. I used to think celiac stole something from me, robbing me of my health. I am young and should never have been so mysteriously ill. Now I feel like it has actually given me a gift. I see that life is short and limiting at one time for everyone in some way. I thank god my kids are safe and my health will improve. I have also been tested a lot. I think the mental test was harder than the physical, lol. There are days when I hate having celiac, it is really a struggle. I am glad though that I am a better person because of it. I always thought of myself as very healthy and when I had medical problems I was so mad! The goal was to be happy and healthy and that was being taken from me so I had to take it back. We are lucky because celiac is beatable! I plan on beating it anyways! It takes lifelong commitment but I never want to feel that way again, so I will do it. It has definately been the biggest struggle of my life as well and has taught me alot. Im finally acheiving my goal which was health! :D

tarnalberry Community Regular

Really, it's just helped me be more conscious that everything is a choice. From avoiding the foods we need to, to the maintaining healthy interpersonal relationships, to having jobs that don't take more from us than they give. Sure, there may be sacrifice in our choices, but there's something we gain in all of them as well, and having that to think about over something as basic as food helped clarify that for me.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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