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Ttg Levels Almost Triple After Eliminating Gluten?

alwaysafter8

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alwaysafter8 Newbie
alwaysafter8
Posted

I was diagnosed with celiac April 27th, 2012.

Prior to this I had pretty much eliminated gluten (since Aug 2011), except for the "made in a facility" things & the occasional cheat (maybe once a month). When I got my TTG test results back, it was at 60.

I got home & immediately eliminated all the "made in a facility" items, only getting glutened a couple times (once in the first week after diagnosis & once about 6 weeks ago). Then 6 weeks ago, since I was still having symptoms, I cut everything & did an elimination diet, to see if there was another intolerance I had. I cut: corn, potato, nightshades, fruit, ALL grains, dairy, sugar, soy, pork, chicken, turkey, onion, garlic, anything packaged/processed.. and I've been VERY diligent. Everything I make is from scratch, anything that I eat that is packaged (spices, nuts/seeds) are stamped gluten-free. My diet is: vegetables (the ones I don't react to), coconut, beef, bison & fish. Fish & eggs make my DH flare up so I limit those. Nuts I seem to do okay with (thankfully!)

I have been neurotically avoiding gluten. Safe makeup, safe shampoo/condish/soap, safe medication/supplements... there's NO way I am having gluten (aside from the couple cc's I mentioned earlier). But there is NO WAY I am eating MORE gluten now, than I was prior to my diagnosis. Absolutely NO WAY. All I've done is cut things since being diagnosed. So, going in for my followup test, I wasn't expecting my numbers to go down a lot, but I was prepared for them to stay the same at the very least. I know healing takes time.

What I DID NOT expect, was to learn my TTG has jumped to 155!!!! My useless doctor says she's "not worried" about my huge levels & that "we'll retest in November". Oh, that's nice, but what about me in the meantime? Clearly what I am doing isn't working, either that or I might have some other autoimmune disease?

Or am I getting glutened because I stare a little too longingly at the cupcakes in the window when I walk past the bakery??? (kidding.... I think?)

Does grainfed beef have gluten in it? What about grainfed eggs? I'm SO confused.

I've had my thyroid TSH checked, it's fine. Sodium/potassium is fine. B12/D2 is fine. Calcium/magnesium okay. I have anemia, but I've been diligently taking my iron supps & my level has been slowly inching up. I have lower-than-expected bone density, but I've been taking calcium for it too. I'm taking a litany of supplements (all gluten free) to make sure I'm getting my nutrients even with this malabsorption thing.

What else can raise the TTG other than gluten? I haven't had a biopsy or any other celiac related tests done (AGA-IgA, etc)... because apparently my doctor is completely incompetent & I guess I am supposed to diagnose myself & ask for specific tests (like I did with the celiac thing). But, sadly, I'm not a medical doctor, I'm just a sick woman who is desperate & slowly (okay, quickly) losing all hope that I'll ever recover from any of this.

Frustrating! Where do I go from here? :(

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alwaysafter8 Newbie
alwaysafter8
Posted
  • Author

Of course, I find out my ridiculously-high-TTG-results on the anniversary of 6 weeks into my elimination diet. Man, if I knew this super restrictive diet stuff wasn't helping AT ALL I would have just continued to eat my gluten-free grains/bread/muffins & been a whole lot happier! :rolleyes:

troykm Apprentice
troykm
Posted

I would suggest your Dr starts investigating. There are other health concerns that can cause your TTG to be high, its not exclusive to celiac. Maybe a few tests to rule out other causes is needed.

Good luck

beachbirdie Contributor
beachbirdie
Posted

Of course, I find out my ridiculously-high-TTG-results on the anniversary of 6 weeks into my elimination diet. Man, if I knew this super restrictive diet stuff wasn't helping AT ALL I would have just continued to eat my gluten-free grains/bread/muffins & been a whole lot happier! :rolleyes:

There are other autoimmune conditions that can raise your ttg, not just celiac. Thyroid disease is one of them, autoimmune hepatitis, Inflammatory Bowel Disease (like Crohn's), a couple of other things.

Your doc should be investigating to rule those out.

Newbee Contributor
Newbee
Posted

My situation is a little different but I've gotten similar responses from my GI doc. My TTG IGA did not go up after being gluten free but after 6 months on a strict gluten-free diet it was still positive (it went from 125 at diagnosis to 30). My doc had told me he expected I would test negative after 6 months. He claimed the test didn't necessarily mean anything and when I asked about other conditions keeping my score high (something I had learned about on this forum) he told me that the test was very specific for celiac so he didn't think anything else was causing it either. He assured me my continuing issues were celiac related. Even though he said the test doesn't necessarily mean anything I still have to repeat it. I would say no but I'm curious to see if it will go back to normal eventually. These doctors can be very frustrating! You could always try for a second opinion, I'm considering doing this.

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