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Oddball?


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2 replies to this topic

#1 Anna_Chira

 
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Posted 24 November 2012 - 10:38 AM

Hey everyone, I'm new. Quick background: 23 years old, female, newly diagnosed celiac (October of this year), been suffering off and on since puberty hit but symptoms have gotten considerably worse in the past year. I was originally diagnosed with IBS but after keeping a food journal I found that my worst symptoms (digestive issues) were connected to enriched wheat flour. So I went to the doctor and had a celiac panel done.

I kind of feel like an oddball because there are certain gluten foods that I can eat and the worst symptoms I get are fatigue and maybe a little bloating, but there are other foods that send me into 10-scale pain. I'm trying to be as gluten-free as possible, but it's really hard to let go of some foods, and even harder to eat out and not be cross-contaminated. I was prescribed Bentyl for intestinal spasms when my doctor thought I had IBS but it doesn't help because my episodes are relatively short (1.5-2 hours). Are there any medications for celiac-related pain or is the only option to go completely gluten-free?
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#2 rosetapper23

 
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Posted 24 November 2012 - 12:47 PM

i can say it once, but others will undoubtedly echo it several times: the ONLY option is to go completely gluten free. I know that it's difficult at first to adapt to a new diet, but it is absolutely essential that you understand that you are doing grave damage to your body when you eat even the smallest amount of gluten. You're still young, so you may have damaged your intestinal lining very little; however, if you continue to eat gluten, you could end up with some horrendous disabilities. For one thing, you could develop other auto-immune diseases such as Hashimoto's Thyroiditis, lupus, gluten ataxia, Sjogren's, etc, or develop neurological difficulties such as migraines, epilepsy, depression, etc. Having celiac means you do NOT have the option to eat or not eat gluten--you must avoid it completely. That said, you will probably not be much older when treatments become available that will allow you to eat gluten for short periods of time. There is also a vaccine that is expected to come on the market within the next five years. In the interim, please take good care of your health and adopt a strict, gluten-free diet. Sometimes when you damage a part of your small intestine, it does NOT repair itself....so you are left with a lifelong disability.
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#3 GottaSki

 
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Posted 24 November 2012 - 04:40 PM

but symptoms have gotten considerably worse in the past year

there are certain gluten foods that I can eat and the worst symptoms I get are fatigue and maybe a little bloating

Exactly what Rosetapper said. There is no safe amount of gluten for someone with Celiac Disease.

I've selected two key thoughts from your post. Your symptoms have gotten worse as time passes.

The symptoms you list as minor will get worse as well until the fatigue is debilitating and the bloating is severe -- it is possible you will develop even more symptoms if you do not remove gluten. The good news is repairing your body and living a healthful life is within your reach.

None of this is said to scare you - it is what it is. Celiac Disease gets worse with any amount of gluten. Even if you are lucky enough to not have symptoms worsen, your small intestine is being damaged each time you eat gluten.

Welcome to the forum - feel free to ask lots of questions and read as much as you can - it really does help a very difficult transition happen a bit more quickly. No one will tell you it is easy, but many will tell you it is worth it.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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