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New And Feeling Overwhelmed Sent To See A Gastroenterology Specialist
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5 posts in this topic

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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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.com/gluten-free/forum-5/announcement-3-frequently-asked-questions-about-celiac-disease/

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

And welcome! :)

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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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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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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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