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Chiron

Where Do I Start?

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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?


Biopsy Confirmed Celiac: January 10, 2008.

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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)


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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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


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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