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Help! New And Need Advice

kali-mist

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kali-mist Apprentice
kali-mist
Posted

Hello all,

I was diagnosed with Celiac in March 2007. I am doing my best with the gluten-free diet, but if it wasn't for this site I wouldn't know what do to. The doctor that diagnosed me didn't really give me any information on what Celiac was, he just told me I had it. The nutrionist I saw was very little help as she knew less than I did. What I would like to know is, am I supposed to go for testing once a year or something to see how I'm doing? I would really like to know how well I am following the diet and how much of the damage has healed. Any advice would be really helpful as my doctor kind of left me in the dark.

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blueeyedmanda Community Regular
blueeyedmanda
Posted

You really do not need to go and get the tests every year. Some members on here do, others don't. It comes down to personal choice really. As long as you are seeing an improvement in your health since going gluten-free, that is evidence enough for some people. I never got retested and it has been a few years now. Hope that helps a little. :)

GlutenWrangler Contributor
GlutenWrangler
Posted

I know a couple people on here have Newbie kits, which are a hige help when first starting the diet. So hopefully one of them sees this post. You definitely don't need to get tested every year, unless you want to check to see if the damage has healed. But that's up to you. Just do your best to eat gluten-free, and watch out for cross contamination. And if you have any specific questions about anything at all, feel free to ask. There's always somone here to help. Good luck,

-Brian

nutralady2001 Newbie
nutralady2001
Posted

My doc wants me to have a follow-up endoscopy in 12 months to see what healing there has been , hopefully that will be it

mftnchn Explorer
mftnchn
Posted

Due to my location, I didn't have blood tests and biopsy, and my doctors have diagnosed me on the basis of Enterolab, double DQ2 genes, and dietary response.

My doctor wants a repeat of the malabsorption index at Enterolab because it was so high, to see if there is improvement. He didn't mention repeating the other tests.

kali-mist Apprentice
kali-mist
Posted
  • Author

When you were orginally being tested for Celiac, what kinds of tests did they do? I have been reading about all these tests like a malabsorbtion test and a gene test and some others that I never did. All I had was an endoscopy and a blood test. Does anyone know what tests are necessary and what tests aren't?

CMCM Rising Star
CMCM
Posted

Julie, if you had an endoscopy and blood test which revealed celiac disease, you don't really need to do other tests. Lots of us do the Enterolab stool tests (to show if we are reacting to gluten, have malabsorption etc) because we haven't found a doctor to trust or who is knowledgeable, or perhaps because we have minimized gluten for so long that the problem would not be evident thru the usual blood tests, etc. The only reason you might do those other tests is pure curiosity, and if you have the extra $$$ to spare for it.

The "extra" tests I did were for casein, soy, egg....I wanted to know if I was reacting to anything else. Thru this I found out I am also casein sensitive.

When you were orginally being tested for Celiac, what kinds of tests did they do? I have been reading about all these tests like a malabsorbtion test and a gene test and some others that I never did. All I had was an endoscopy and a blood test. Does anyone know what tests are necessary and what tests aren't?
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    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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      Bob red mill gluten free oats

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