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Where Do I Start?


Chiron

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Chiron Apprentice

I am in the diagnostic stage with Celiacs.

I have been chronically sick for the past 12 years and have been to doctor after doctor who have not been able to figure me out. I have been diagnosed with Fibromyalgia, Crohn's, Peripheral Neuropathy, Thyroid Disorder, and Major Depression but after reading a number of posts here I am wondering how much may be gluten related.

The Labs I have done so far include:

Immunoglobulin A: 438 mg/dL (ref 46-287)

Tissue Transglutaminase IgA: 38 units (>30= moderate to strong positive)

EMA= positive

and I have a biopsy scheduled for this week

I feel like my Drs are headed down the right path but aren't helping me understand what is going on. What do all these numbers mean? Have they ordered the right tests? Is it celiacs?

And then...where in the world do I start. I feel very overwhelmed!

Oh yeah....I work in a deli making sandwiches all day long. Is this going to be an issue if I am not eating the bread, just handling it?


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loco-ladi Contributor

Sorry I can't help you on the test results, I never could get anyone to actually test me... diet works I stick to it....

So lets assume it is celiac disease...

You start with the basics......

Start with food.... basic meat and veggie's until you get past step 2...

step 2 is learn to label read..... its not easy but you will need to learn

step 3..... get paranoid.... about cleaning out your kitchen cupboards, go thru every label... what will not be eaten give to charity or a friend, you wont be needing it any more. (do not toss out your cookbooks you can adapt the recipes)

step 4... replace possible CC'ing dishes, pots, pans and other items

step 5... move on to hand lotions, shampoos and the like

step 6... realize its been so VERY long since you felt this good!

But ALWAYS take it one day at a time, the begining is the worst not knowing how to read a label and trying to remember all the suspect inredients takes a long time to learn and forever to master...

be patient, you didnt get this sick in 1 day and it will take more than 1 day to feel better.

READ... get busy searching the forums, buy books(my favorite is gluten free for dummies by dana korn)

GlutenWrangler Contributor

You have positive numbers for IGA, TTG, and EMA. You have celiac disease. A biopsy will just confirm it. Positive TTG indicates damage, which could mean that your biopsy WILL show flattened villi. But regardless, with those numbers you definitely need to go on a gluten-free diet. Start it after the biopsy. If you need any support with the diet, don't hesitate to ask. Good luck,

-Brian

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  • Posts

    • Fayeb23
      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
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      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
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      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
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      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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