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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)

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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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    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
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      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
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