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over50

Higher Ttg Results

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I was diagnosed nearly 7 months ago and have watched my Ttg levels dropping nicely due to being very diligent about avoiding gluten. My last test was in Nov '10 and the test was 44 coming down from June '10 of 100, tested last week early Jan and the result now is 85! I cannot begin to guess what has caused this elevation, my dietitician says it cannot be X-contamination because I'm being so careful, so what could it be? I'm almost afraid to ask.

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Hi,

Do you live in a gluten-free home? Do you eat out much? How about personal care products...are they all gluten free, even your makeup and shampoo/conditioner? Do you buy a lot of pre-packaged foods? What about your supplements and medications? Getting answers to these questions will give all of us a good starting point in seeing if we can dicover the culprit.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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Just curious...how long should it normally take for tTG numbers to go down to zero assuming one is diligent in being gluten free? Is there any info available as a guideline?


Sylvia

Positive Celiac Blood Panel - Dec., 2009

Endoscopy with Positive Biopsy - April 9, 2010

Gluten Free - April 9, 2010

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I was diagnosed nearly 7 months ago and have watched my Ttg levels dropping nicely due to being very diligent about avoiding gluten. My last test was in Nov '10 and the test was 44 coming down from June '10 of 100, tested last week early Jan and the result now is 85! I cannot begin to guess what has caused this elevation, my dietitician says it cannot be X-contamination because I'm being so careful, so what could it be? I'm almost afraid to ask.

Our home is not strictly gluten-free. I am, but my partner still consumes gluten, though he is pretty thorough in trying to keep it away from me. We use separate dishes, cutlery dishrags etc.all my medications have checked out as gluten-free at least as far as labelling goes. My shampoo is not gluten-free but I'm careful about it, though must admit that sometimes hair does get into my mouth inadvertently. I bought a gluten-free lipstick back in Nov, so it isn't lipstick for sure. Any other cosmetics if containing gluten cannot be absorbed by the skin so no worries there either. I don't eat packaged foods other than the occasional Red Mill bread mix or cookie mix or pastry mix (Glutino). I have been very careful and cannot understand this reading. However I did drink some red wine at Xmas and don't know if it was gluten-free or not. So basically I'm stumped. I have reread the Celiac for Dummies and there is the possibility maybe of Pancreatic insufficiency I think it was called.? I don't know.

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Are you eating gluten-free oats? Some celiacs are sensitive to them.

Hi Skylark, no I'm not eating oats of any sort, not even gluten-free, just boring rice cereal or quinoa or millet.

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Hi,

Do you live in a gluten-free home? Do you eat out much? How about personal care products...are they all gluten free, even your makeup and shampoo/conditioner? Do you buy a lot of pre-packaged foods? What about your supplements and medications? Getting answers to these questions will give all of us a good starting point in seeing if we can dicover the culprit.

I sent my reply to the wrong place I think. Basically we are gluten-free, at least I am and my partner is careful about keeping his bread etc. away from my part of the kitchen, also separate cutlery, dishes etc. Lipstick purchased as gluten-free in Nov and Ttg after that was ok, shampoo/conditioner is gluten but I've been using it since the summer, so cannot be that either. No to pre-packaged other than the occasional use of Red Mill mixes. Supplements as stated gluten-free on the labels, basically I cook from scratch and bake same. I did use a commercial corn meal because we had it and I didn't have a gluten-free , that was in Dec, made cornbread with it...delicious, and had a glass of red wine at Xmas, who knows if it had gluten? So other thank that I cannot figure it out. Unless there is something else going on, either food intolerance of another product or another ailment....sigh..

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Just curious...how long should it normally take for tTG numbers to go down to zero assuming one is diligent in being gluten free? Is there any info available as a guideline?

Hi sal1937,

I'm not sure but I think from discussing this with folks from the Celiac Soc here in town, that it can take years. One woman who is now in her early fifties, said she was diagnosed about 15 years ago and it took her 12 years to get down to <20.So I guess it can take quite a time.

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I sent my reply to the wrong place I think. Basically we are gluten-free, at least I am and my partner is careful about keeping his bread etc. away from my part of the kitchen, also separate cutlery, dishes etc. Lipstick purchased as gluten-free in Nov and Ttg after that was ok, shampoo/conditioner is gluten but I've been using it since the summer, so cannot be that either. No to pre-packaged other than the occasional use of Red Mill mixes. Supplements as stated gluten-free on the labels, basically I cook from scratch and bake same. I did use a commercial corn meal because we had it and I didn't have a gluten-free , that was in Dec, made cornbread with it...delicious, and had a glass of red wine at Xmas, who knows if it had gluten? So other thank that I cannot figure it out. Unless there is something else going on, either food intolerance of another product or another ailment....sigh..

I would look for a gluten free shampoo and conditioner as it may take a while for low levels to catch up to you. Your partner who eats gluten do they brush their teeth before kissing? That could CC you. Are you reading the ingredients on the supplements? Some will say gluten free but still have wheat and barley grass which are really not safe for us.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Since you are still having issues I would ditch all of the cosmetics and health and beauty care products. Yes you are correct in that you can't absorb it through your skin, but it still may help to eliminate it. I eventually had to eliminate all of Bob's Red Mill products. My own theory on why is that I believe I was getting low levels of cc from their gluten free oats to which I am extremely intolerant of (cause same as gluten reaction). I think the low levels took a little while to build up in my system and then I started having trouble. It took me 8 months of last year to figure this out. Since eliminating and with a little help from creon for awhile I am doing so much better.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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I was diagnosed nearly 7 months ago and have watched my Ttg levels dropping nicely due to being very diligent about avoiding gluten. My last test was in Nov '10 and the test was 44 coming down from June '10 of 100, tested last week early Jan and the result now is 85! I cannot begin to guess what has caused this elevation, my dietitician says it cannot be X-contamination because I'm being so careful, so what could it be? I'm almost afraid to ask.

Since the Ttg can become elevated with the presence or development of other autoimmune issues like Hashi's thyroid disease and liver disease (which are associated with Celiac anyway), using this test to monitor dietary compliance is not really the way to go. It doesn't automatically mean you are ingesting gluten, especially if you are feeling well and are asymptomatic. I have multiple autoimmune diseases besides Celiac and my Ttg did not drop into the low normal range until I got those under control.

You may be triggering for another problem like thyroid disease so I would look into having some other blood work done before you start going crazy thinking it's from gluten ingestion. Doctors make this mistake all the time.

They often run the wrong tests. Have your thyroid tested and some blood work done to test liver function. I am not trying to scare you but this is what happened to me. Most of these other issues can be brought under control.

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Since the Ttg can become elevated with the presence or development of other autoimmune issues like Hashi's thyroid disease and liver disease (which are associated with Celiac anyway), using this test to monitor dietary compliance is not really the way to go. It doesn't automatically mean you are ingesting gluten, especially if you are feeling well and are asymptomatic. I have multiple autoimmune diseases besides Celiac and my Ttg did not drop into the low normal range until I got those under control.

You may be triggering for another problem like thyroid disease so I would look into having some other blood work done before you start going crazy thinking it's from gluten ingestion. Doctors make this mistake all the time.

They often run the wrong tests. Have your thyroid tested and some blood work done to test liver function. I am not trying to scare you but this is what happened to me. Most of these other issues can be brought under control.

to Gemini

well I 've had the tests for thyroid done before and most recently Mar '10 Hyperparathyroidism ruled out, also in Jan '11 tests for Albumin, Alkaline Phosphatase, Gamma GT ALT, AST all came back in the moderate range, and tumour markers were extremely low, so I guess they've done what they should but obviously something is out of whack. Thanks for your considered response, any other thoughts are welcome.

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It's often recommended to get AGA (IgA and IgG) as follow-ups too. That can help indicate if the problem is definitely gluten.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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