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How Long Till A Normal Ttg.


Kat'sMommy

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Kat'sMommy Newbie

Hello everyone, I don't write often, but you have been a wonderful source of information over the last 6 months. Thanks

My dd had her 6 month follow up with the ped. GI and our blood test results weren't back on time. She had been having occasional stomach aches, but we are all convinced that it is lactose issues.

So, two weeks later I get a call from a very polite nurse who tells me that the ttg is at 22. He says, check the diet because she is getting gluten somewhere. That was the end of the discussion. I did not think to ask anything else, and nothing else was offered.

I have checked everything. Even the toothpaste and shampoo. I can't find anything.

So, I guess my question is could this be just a cc issue? one accidental glutening? Could it be my pots and pans (they are not coated in teflon) Is she just not healed yet?

I guess I should mention that in 6 months her number did drop 80% from 108.

Any help would be wonderful! Thanks! Christine


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happygirl Collaborator

Is she eating out at all?

Are her medications/vitamins gluten free?

Are you careful of cross contamination in your home (separate butters, peanut butters, etc for her)?

Dr. Green, one of the leading experts on Celiac, says that: www.celiacdiseasecenter.columbia.edu

7. Monitor serum antibody levels

Patients are advised to have follow-up antibody levels measured at 6 and 12 months. Most patients have normal levels by that time though it may take up to 3 years to normalize in some individuals. It is reasonable to assess antibody levels annually. This will serve to monitor adherence to the diet though is not sensitive for minor dietary indiscretions

I am not a medical professional, but it sounds like she is on the right track, and is just taking a bit longer to heal than "normal."

After 12 months pass, if she still has elevated levels, it may be worth it to look into a repeat biopsy.

JennyC Enthusiast

You definitely seem to be doing a good job with the diet. That much of a decrease is great for 6 months on the diet. I might be a little more careful about cross contamination just to be safe, but wait to be concerned until you get her blood work done after 1 year. As previously mentioned it can take quite a while for the tTG levels to go down.

wolfie Enthusiast

It would seem to me that after 6 months she is doing well. 22 down from 108 is great in 6 months. I agree with the above poster that it can take a while to completely normalize.

Kat'sMommy Newbie

Thanks everyone for the answers. We are pretty gluten free as a house hold, but I will redouble efforts on cc. I think we are doing pretty good. I am known for being a little OCD on cleanliness in the kitchen even before the Celiac.

For now we will keep plugging away and see what happens come June 2008.

Thank you so much! Christine

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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