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Overwhelmed by celiac


CookiesandCream

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CookiesandCream Newbie

Hi, I'm pretty overwhelmed by my blood test results as I never even thought I would have celiac. My naturopath tested me for everything under the sun and this came up positive. My regular dr gave me a referral for the gastro. I really don't want an endoscopy, I hate hospitals and I hate medical procedures even more. I don't mind going gluten free, as I barely eat it anyways. Should I wait until I see the gastro to start? If I don't want the endoscopy is there even a point of going? I've read that if the antiendomysial iga is positive it means I have celiac without a doubt... Also, I've heard about a specific carbohydrate diet. Does anyone here have experience with the diet and what it's like? Thanks!

  • ANTI TTG IGA MULTIPLEX 226.20 U/ML ( 0.00- 15.00) (.........)*
  • POSITIVE
  • ANTI DGP IGA MULTIPLEX 77.40 U/ML ( 0.00- 15.00) (.........)*
  • POSITIVE
  • ANTIENDOMYSIAL IGA 1:5 POSITIVE

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GFinDC Veteran

Hi,

You should not go gluten-free until all testing is done.  When you go gluten-free the antibodies to gluten will start to decrease and the tests won't be accurate.

The endoscopy is not a big deal IMHO.  I had the endoscopy and a colonoscopy at the same time, my doctor called it a twofer.  I was put to sleep and woke up and it was over.  I did have a slightly sore throat for a couple days but that was it.

You should definitely go see the gastro as he may be lonely... :)  Or because he might authorize followup testing in 6 months or a year to see if your antibodies have come down on the gluten-free diet.  Another thing people sometimes get tested is bone density, as it can be compromised in celiac disease.

The SCD is a diet that is often suggested by people selling books on it.  You can do a fine job of the gluten-free diet without buying a book.  Just eat whole foods like meats, veggies, nuts, eggs and some fruit.  Avoid most of the gluten-free processed foods for the first few months and also dairy.  A simple diet is the best way to start going gluten-free and heal your body.

tessa25 Rising Star

The endoscopy is easy peasy. They put you under, you wake up and go home.

CookiesandCream Newbie

I'm just confused why I would need more testing if the blood test is accurate. I don't care if I have an official diagnosis or not. Is that the reason to do the endoscopy?

Ennis-TX Grand Master
1 hour ago, Cookies&Cream said:

I'm just confused why I would need more testing if the blood test is accurate. I don't care if I have an official diagnosis or not. Is that the reason to do the endoscopy?

They check the level of damage and other complications.....you could have other issues, and secondary issues caused by celiac that might need to be addressed. Heck a double scope to check lower and upper in one procedure would be nice -_- they did not give me the colonoscopy the first time, years later found out I also had UC. Scopes can show damage, h piyori, sibo, ulcers, folds, etc. With celiac your prone to other issues, if nothing else if you get a follow up scope later you can judge how much it has healed.

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      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
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