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1year And1/2 Gluten-free And Elevated Ttg! Help!

oceangirl

By oceangirl
in Coping with Celiac Disease

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oceangirl Collaborator
oceangirl
Posted

Hi All,

I am feeling INCREDIBLY frustrated. After a year and a half gluten-free I decided to see if my tTg levels had gone down. I tried to time this so I was feeling well and had had no suspected "glutenings" although, as Fate would have it, that was not entirely the case. The HIGHEST my tTG had been (after 4 months wheat-free) was 28 (scale: 0 to 10 being "normal") Well, my doctor's nurse just told me my tTg is now 31!!! No other levels elevated on panel. (Ran the whole thing) I DID have at least one major glutening during the 2 to 3 weeks prior to my blood being drawn, but I am just beside myself trying to understand why else I would have antibodies against my own tissue. My doctor was USELESS. Said it meant I could go ahead and eat gluten and when I informed her you could not pay me enough money or offer me Eternal Life in exchange for such a privilege, they just acted like I didn't know what I was talking about. Meanwhile, when I asked what other conditions could cause elevated anti-tissue transglutimase (oops, spelling) they said there was nothing. This clearly seems misguided at best and completely in the dark at worst. (I believe they suspect Chron's could be implicated?)

ANY thoughts? I said, "I guess I'm just on my own like I have been for the past 35 years of my life" and the nurse just said, "Yeah." AAAARRRRGGGGHHHHHHHH!!!!! I feel like I am crazy again although I know I'm not. I don't feel "perfect". But MOST of the 28 or more serious symptoms I had prior to being gluten-free are predominately gone. I have put potatoes and tomatoes back in but I THOUGHT they were okay. (no serious reactions)

Thank you anyone who reads through this morass and to anyone who has any insight.

lisa

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hez Enthusiast
hez
Posted

I think I would go through my house and look at everything I come in contact with. Is the shampoo, soap really gluten-free? Could there be an ongoing cc that is going by unnoticed? Check and recheck everything.

Then do some research on the elevated Ttg and see if you can come up with something.

I am sorry I am not of more help. It is so frustrating.

Hez

happygirl Collaborator
happygirl
Posted

Here's some info I found:

Open Original Shared Link

"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"

Open Original Shared Link

"However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38}"

References to that sentence: Open Original Shared Link

Personally, I would go to an expert on Celiac, armed with your records, to discuss, and potentially 1. do repeat bloodwork and/or have a follow-up biopsy. One of the concerns with those who still have elevated numbers and symptoms may be refractory Celiac. Even if its not that, you need a dr. who will do a full work up and work with you to determine the problems.

Best of luck to you and I sure hope you find some answers!!!!!!

jerseyangel Proficient
jerseyangel
Posted

Lisa,

All I know is that when I had my levels done at 2 years (in June), my gastroenterologist didn't do the Ttg because he said they yield too many false positives. (?) He used to do it, but doesn't anymore.

If your other levels were fine, I'm wondering if you may have had a false positive? I don't know, just throwing it out to you. :)

Of course, it may be someting else, so it might be a good idea to get another opinion.

oceangirl Collaborator
oceangirl
Posted
  • Author

Thank you all for your replies. I clearly need to do more research. I know gluten is an enemy- I have done enough challenges to be assured of that. However, perhaps something else is going on or perhaps this is just "normal" for me. I appreciate your help.

Thank you,

lisa

gfpaperdoll Rookie
gfpaperdoll
Posted

Lisa, I am sorry you have gotten a high reading... I know that is such a bummer, with all that we go thru to be healthy.

Are you eating oats? gluten free grains? If you are eating those then I would give up the gluten free grains & oats for 6 months & then get retested.

Arpita Apprentice
Arpita
Posted

Wow...sorry, about the story with the doctor. Great resources given by another member above. I'd just those out. From what I've researched, I would thing the glutening from 2-3 weeks ago would be enough to lead to that result. I know I definitely have symptoms that long in response to one glutening, and that with time smaller amounts of gluten make me respond (though I am much better in terms of symptoms overall!).

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oceangirl Collaborator
oceangirl
Posted
  • Author

Thank you. I do eat rice- no other grains. I have been feeling MOSTLY good for three months now other than the couple of big glutenings. That's why this test took me so by surprise.

lisa

jmd3 Contributor
jmd3
Posted

So sorry your are having troubles. I too am having the same issue right now.

I had my levels rechecked and the results came in last week. Mine were high again. My GI told me I had to wait yet another 3 months to get them checked again to make sure the levels came down. He told me it would take 3 months without gluten to get them down again. I think your results were from your glutening several weeks ago.

jmd3 Contributor
jmd3
Posted

Opps double post

oceangirl Collaborator
oceangirl
Posted
  • Author

Thank you, JMD,

lisa

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