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New And Feeling Overwhelmed Sent To See A Gastroenterology Specialist


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4 replies to this topic

#1 jmcclesk

 
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Posted 06 May 2012 - 02:22 PM

I had the blood tests done
TISSUE TRANSGLUTAMINASE IgG 0.14 < 0.90 - Index
Tissue transglutaminase IgA 1.78 < 0.90 - Index
Now my Dr is stating that i have Celiac's I asked him about changeing my diet and he stated No not till i see a Gastroenterology specialist. he dosent want me to change my diet because the Gastroenterology specialist might not see the problem if i change my diet.

This is what confuses me if the blood tests say i have the problem why wait!! I do have Hashimoto's and diverticulitizelites.
could it be they know there is a problem and they cant figure it out?? or they dont want to do the leg work or maybe Cypro and pain meds are cheaper.

RANT OFF

I am willing to make a diet change i have keep a food log on and off for the last year or so. I can tell you that i do have a strong reaction to whey powder protien BIG TIME.

Where do i start?? is there a book that will list gluten free foods. what is it i look for on food lables?? besides wheat??


thanks
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#2 Lisa

 
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Posted 06 May 2012 - 04:25 PM

I had the blood tests done
TISSUE TRANSGLUTAMINASE IgG 0.14 < 0.90 - Index
Tissue transglutaminase IgA 1.78 < 0.90 - Index
Now my Dr is stating that i have Celiac's I asked him about changeing my diet and he stated No not till i see a Gastroenterology specialist. he dosent want me to change my diet because the Gastroenterology specialist might not see the problem if i change my diet.

This is what confuses me if the blood tests say i have the problem why wait!! I do have Hashimoto's and diverticulitizelites.
could it be they know there is a problem and they cant figure it out?? or they dont want to do the leg work or maybe Cypro and pain meds are cheaper.

RANT OFF

I am willing to make a diet change i have keep a food log on and off for the last year or so. I can tell you that i do have a strong reaction to whey powder protien BIG TIME.

Where do i start?? is there a book that will list gluten free foods. what is it i look for on food lables?? besides wheat??


thanks



I know that you are overwhelmed right now. It's okay to be.

This is the full panel that you should have been tested:


Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

An endoscopy exam can determine the amount of damage and can also look for other issues. If, indeed you do have Celiac, healing can begin the moment you remove it from your system.


I would recommend www.CeceliasMarketplace.com for the Grocery Guide. Or www.triumphdining.com for another option.

Gluten is the protein found in wheat, barley and rye. Wheat, by law, is required to be listed on an ingredient listing of a product. Barley (malt) and rye are not.

This might be helpful, also:

http://www.celiac.co...celiac-disease/


Please take a walk around this place. It carries the best information around.

And welcome! :)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 MitziG

 
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Posted 07 May 2012 - 04:28 AM

You have celiac disease. False positives on the blood tests are unheard of. However, most doctors won't dx it without a confirming biopsy. Don't know why. And yes, you do have to be eating gluten for that.

So, if you want the official dx, wait for the biopsy. But be assured, regardless of what the biopsy indicates (they can easily miss celiac) you DO have the disease and need to go on a gluten free diet for the rest of your life.

The Hashimotos is here to stay, but hopefully you will not develop additional autoimmune disorders. The diverticulitis you will likely see relief from.

Argh. So frustrated with doctors letting people fall apart before they even THINK to look at a food issue.

You are in the right place. You will find accurate answers to all of your celiac questions here. Welcome.
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#4 jnh380

 
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Posted 07 May 2012 - 12:42 PM

I had the blood tests done
TISSUE TRANSGLUTAMINASE IgG 0.14 < 0.90 - Index
Tissue transglutaminase IgA 1.78 < 0.90 - Index


This looks like the test Kaiser Permanente does. I had this happen to me 2 months ago. I got the IGA result of 1.56, which the PCP told me was in the "High" range, yours potentially is in the very high range and is a strong indicator that you have celiac.
I had the biopsy done a few weeks later (not bad at all, i was knocked out). You need to be careful with Kaiser and the endoscopy results. I got my report from them so that I could see the results for myself. They do minimal amount of reporting on the test. My test stated only "partial villous blunting of unknown significance", which the doc at first said was not a "classic sign" of celiac. He has since cautiously given me a diagnosis of "mild" celiac (which is BS, it is a yes or no problem disease.)
My point is you will have to do your own legwork with kaiser and get all the reports for yourself. Don't wait for them to give you a diagnosis, start the diet after the endoscopy and see if you start to improve. Kaiser's system is not set up to be thorough for celiac testing. there should be a full panel of blood tests, and the biopsy report should state everything they see, not just a one line summary, but unfortunately what we get is one blood test and rudimentary biopsies.
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TTG positive, Biopsy positive, April '12
Elevated ALT, Bilirubin, low Vitamin D
Peripheral neuropathy, GI issues, joint pain

#5 jmcclesk

 
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Posted 07 May 2012 - 07:39 PM

Thanks for the input all!
I saw the Gastroenterigst today. he did offer the biopsy. how ever he did state that the blood test that i had, was over 90plus %accurate. I think i will just start the diet. I was so sure that food was causing my problem that i have kept a food log on and off for the last year. I was able to find a 3-4 week period where there was little to no gluten except for a scone one week and a fast food hamburger on another week. On both of those days i listed bad gut problems in my notes

thanks
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