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wendylu

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wendylu Rookie

Hi everyone!

I'm a bit new here have been pondering about for a few days so I thought I would interduce myself. My name is Wendy and I'm 20 years old from Indianapolis, Indiana. I've been through this lovely roller coaster ride for about 3 years now, finally they're getting ideas of what is going on with me! I've been to numerous hospitals always with the same complaints...sever stomach pain, bloody stools, fatigue, depression, and many more! All I ever got was it's all in your head pretty much, or that's at least how it seemed. They would shoot me up with some pain medicine and send me on my way.

I finally, 2months ago, got them to do an ultrasoud, to see if I had gallstones, negitive of course. They "supposedly" took out my appendix when I was 17, that wasn't it. Then they said IBS, nope...then it was chrons disease...yet again not it...so I finally got them to do an endoscopy/colonoscopy last Wednesday. they biopsied my intestines, stomach, colon, and something else and I get the results on Thursday...nervous but excited! Right now it's a toss up between celiac or micro ulceritive colitous. Please excuse my spelling.

The only reason they are finally taking interest, in my opinion, is because I have lost over 20lbs in less than a month because I cannot seem to put weight on. I'm currently at 95lbs, it's horrible! Hopefully it's looking up, I have now gone gluten free and there isn't much pain, so I think it's the Celiac...

I have learned so much on this site I love it and greatly appreciate it! Thank you all!

Wendy


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Lisa Mentor

Hi Wendy and Welcome to the Forum!

I hope that you get some answers quickly. We would certainly like to welcome you into our club, because it can be managed with a gluten free diet, with no surgery or medications.

Please feel free to walk around this site. There is no better information of Celiac and associated issues. Use this time to study up. ;)

Live2BWell Enthusiast

Hi ! Wow, that's great that you are finally getting some answers, do let us know! I relate to what you're going through, I too have been on the diagnosis yo-yo for about 2 years (and not totally diagnosed yet.) Best of luck with everything and keep us posted :)

MELINE Enthusiast

Welcome Wendy!! good luck with your results. Let us know how things are going for you.

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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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