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Last Time I Will Ask, Any Reasons For High Ttg


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43 replies to this topic

#1 StephanieL

 
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Posted 17 January 2012 - 02:17 PM

We have had high tTG's for 2 years now. Biopsy done 2 years ago was negative. Went gluten-free 2 years ago.

Original tTG- 120
6 months gluten-free-48
12 months gluten-free-38
18 months gluten-free-36

We have scrutinized his diet. I have called on products that aren't in labeled gluten-free. I have tested foods that were in question with Gluten EZ. I make most of his food because he is also allergic to dairy, egg, peanut and tree nut.

We have replace all his cook wear. No toaster for x-con.



Any ideas?
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#2 pricklypear1971

 
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Posted 17 January 2012 - 02:32 PM

Does this help at all?

http://www.celiacdis...C05-Testing.htm
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 StephanieL

 
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Posted 17 January 2012 - 03:44 PM

Thanks. I have been reading that same thing for 2 years now! lol

There aren't any indications of any of the other conditions listed.

Is it assumed that since there was an initial drop in tTG that is would be Celiac?
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#4 pricklypear1971

 
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Posted 17 January 2012 - 04:26 PM

I have no answers other than perhaps he's getting gluten outside your watch OR that's just "normal" for him OR one of the other autoimmune conditions hasn't manifested but is still there (as ai is known to do).

Did he test + on any other Celiac tests?

Is the Ttg a measurement of gluten presence? I think It is a measurement of intestinal damage...so there could be damage still? Unlikely but possible after 18 months.

Were all of the tests performed at the same lab?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 pricklypear1971

 
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Posted 17 January 2012 - 04:28 PM

This is older, but may be relevant.

http://www.ncbi.nlm....ubmed/11753161/

Assuming I'm reading correctly, the Ttg is a kit and there are different manufacturers. Kit difference? You really need someone with scientific training to read this...or just not ME.

http://celiachometes...iac-disease.pdf
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 Skylark

 
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Posted 17 January 2012 - 04:37 PM

Check pet foods, shampoo for wheat ingredients. We had someone who didn't get well until their critters were gluten-free because of wheat dust around the house from kibble. I assume he isn't eating oats. No Play-Doh or other gluten toys, right?
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#7 StephanieL

 
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Posted 17 January 2012 - 06:52 PM

Thanks all for trying to help me crack this case.

No pets, no shampoo, no play-doh at home or school. No oats.

Are there people who just have a naturally higher tTG?
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#8 pricklypear1971

 
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Posted 17 January 2012 - 07:14 PM

Thanks all for trying to help me crack this case.

No pets, no shampoo, no play-doh at home or school. No oats.

Are there people who just have a naturally higher tTG?


I believe that's what at least one link suggests. I know its difficult to consider but there may also be a "yet to appear" autoimmune condition brewing. I am guessing only time will tell.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 Roda

 
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Posted 17 January 2012 - 09:31 PM

Thanks all for trying to help me crack this case.

No pets, no shampoo, no play-doh at home or school. No oats.

Are there people who just have a naturally higher tTG?

If he doesn't eat oats do you check the gluten free products for gluten free oat cross contamination? Just a thought. I'm extremely sensitive to certified gluten free oats and cross contamination from them. I have to call and check about oat CC. It has eliminated a lot of gluten free products for me. There are manufactures that don't use oats at all and I tend to stick with the certain companies and have done fine.
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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.


#10 StephanieL

 
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Posted 18 January 2012 - 07:56 AM

There are no oats in any of his foods. Most of his foods are from companies who make only one thing so I don' think that's it.


Question: He sucks his fingers. Would it be possible he's picking up THAT much gluten from that to throw off the diet?


Thiss is seriously driving me crazy. We are ready to drop $300 for test strips to test all his foods. That should be fun.
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#11 pricklypear1971

 
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Posted 18 January 2012 - 08:04 AM

There are no oats in any of his foods. Most of his foods are from companies who make only one thing so I don' think that's it.


Question: He sucks his fingers. Would it be possible he's picking up THAT much gluten from that to throw off the diet?


Thiss is seriously driving me crazy. We are ready to drop $300 for test strips to test all his foods. That should be fun.


Is he in school/preschool/daycare? I assume he leaves the house and goes to the grocery store with you, etc.? Plays with non-gluten-free kids?

All of those are opportunities for him to get into it. Or sneak it. Or for someone else to give it to him...

If he's a finger- sucker (what kid doesn't have some habit that involves putting something in the mouth) and regularly gets into something then it could be putting gluten in his body.

I'd look at routine and the most frequently eaten foods.

That said, it could be his "normal". His Ttg did drop significantly from Pre gluten-free.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#12 StephanieL

 
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Posted 18 January 2012 - 08:20 AM

Because of his allergies and Celiac, he is a strict "Only food from home" at school. We pack his lunch and snack. He has a "treat bucket" there for surprise parties and things which is all gluten-free and allergy free. They don't do play-doh when he is there and there are 5 days off and through "weekend" cleaning before he's back at school (he goes M-T-W).

He isn't a sneaker of food. He's only 5 and really isn't out of sight much that he would get into anything.

I don't take him to the store. He doesn't like to go and it's easier to go without ;) We pretty much do all play dates here because of his allergies.


Do you all think testing his foods should be our next step? Or is it more likely that he just has a higher than most tTG?
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#13 Gemini

 
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Posted 18 January 2012 - 08:39 AM

Thanks all for trying to help me crack this case.

No pets, no shampoo, no play-doh at home or school. No oats.

Are there people who just have a naturally higher tTG?


Stephanie...I have pointed this out a million times on this forum and still am surprised to hear that doctors mistakenly use the tTg test to monitor
for gluten ingestion. Are they running the AGA IgA/IgG or the Demeadiated Gliadin Protein test also? Those are the ones that will tell you if he is ingesting gluten, if he was diagnosed via blood work. The tTg tests for intestinal damage or can be indicative of other autoimmune issues brewing. There may be no symptoms yet of another problem or symptoms that no one is noticing. Thyroid disease, Rheumatoid arthritis, liver problems are some diseases that will keep tTg elevated.

I have 3 other autoimmune diseases besides Celiac and my tTg was slightly elevated for about 3 years after diagnosis. I was not ingesting any gluten as my other tests came back stellar. That should be a huge clue that something else is keeping it high OR it just may take up to 3 years for a return to normal range or the issue with additional problems. At diagnosis, my tTg was 200 so you can see how high it was initially but it did go down to a low normal range after 3 years of healing. It can take that long sometimes because inflammation heals at it's own pace.

Have your son's symptoms resolved since going gluten free? If they have, then it's highly doubtful he is ingesting gluten to keep the tTg higher than normal. If you are being diligent with the diet, then you shouldn't be overly worried that this is the cause. I also wonder if his many food allergies may be keeping his tTg higher. It's not outrageously high but elevated. That's a lot of food issues to have at so young an age. So maybe this accounts for the increased inflammation in his body and you need to give the diet a longer time frame to heal. I admit, I was way older than 5 when diagnosed and healing but you should be able to get your tTg into the normal range, unless there are other reasons for inflammation. Lots of food allergies, to me, could be a likely culprit. I wouldn't become paranoid about his food sources as you seem to be doing a good job and controlling what he has access to.
I would ask for the other tests to be repeated and if they are normal, be patient for a while longer. Hard to believe it can take that long to heal but it can! Good luck! :)
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#14 MitziG

 
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Posted 18 January 2012 - 09:45 AM

A couple more possibilities-

His numbers DO continue to drop, albeit very slowly. Perhaps his body is just so "revved up" against gluten as well as his other food allergies, that the immune system is just taking extra long to settle down and quit producing antibodies. No scientific basis for this, just a theory that would make sense to me.

It sounds like the rest of the household is not gluten free? He could be reacting to minute particles from unwashed hands, etc, if that is the case.

Also, does your son eat alot of fruits and veggies? These SOMETIMES are coated with wax...which SOMETIMES contains gluten. We found this our after my sons tummy aches continued in severity, and his numbers refused to drop after 6 months of being scrupulous. I found ONE reference to fruit sometimes being coated with gluteny wax- and he gobbles apples in particular (the worst offenders) by the dozen. Started buying organic produce when possible, and cleaning thoroughly with a produce wash when not organic. Tummy aches lessened within days. He just got his number re-checked on Monday, but I expect they will have gone down as well.

Having celiac is very much a PROCESS I have discovered. You are ALWAYS chasing down gluten it seems, and constantly connecting the dots between symptoms and health issues caused by gluten. It sounds like you are doing a good job though, the fact that his numbers are dropping shows he is making progress. Just remember for some of us, recovery takes a LONG time!
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#15 StephanieL

 
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Posted 18 January 2012 - 10:35 AM

Thanks so much. I will ask about those tests. Do you have any research I can point out to my Dr. about these being what needs to bee looked at for diet compliance?

As for resolving symptoms, he never had any to begin with. We were sent to and Endo because of a zero Vit. D level. She ran the Celiac test, sent us to the GI. We went to 2 different GI's as before we scoped. Scope was inconclusive per our hospital. I have since had the slides looked at by Dr. Fasano and he said they are negative. So really, I can't answer if his symptoms rectified because there weren't any. The Vit. D levels went to normal within 3 months of putting him on a supplement while he was still on gluten.


As for fruit, I only do organic and we wash everything before they eat it so I don't think it would be that. You are right in that we are not a 100% gluten-free house. We do have separate every things for gluten and gluten-free. I am not saying that can't be it but wouldn't there have to be a LOT of x-con of that? Though from what Gemini says, maybe it isn't ingestion.

Off to call the Dr. Thanks again so so much for helping me try and figure this out!
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