Questions about health

[StephanieL 74]

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?

[pricklypear1971 355]

Does this help at all?

http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm

[StephanieL 74]

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?

[pricklypear1971 355]

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?

[pricklypear1971 355]

This is older, but may be relevant.

http://www.ncbi.nlm.nih.gov/m/pubmed/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://celiachometest.typepad.com/files/comparison-of-commercially-available-serological-kits-for-detection-of-celiac-disease.pdf

[Skylark 938]

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?

[StephanieL 74]

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?

[pricklypear1971 355]

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.

[Roda 186]

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.

[StephanieL 74]

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.

[pricklypear1971 355]

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.

[StephanieL 74]

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?

[Gemini 836]

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!

[MitziG 95]

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!

[StephanieL 74]

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!

[StephanieL 74]

I have a call into our GI about the latest blood work. I did find some from when we did the biopsy and he was still on gluten.

IgA-Endomysial 59 (low: 22 high:157)

Gliadin IgG- 17 (<20)

Gliadin IgA- 6 (<20)

tTG IgA0 126 (<20)

Reference ranges in ( )

So what do normal Gliadin before going gluten-free mean?

I think I am just confusing myself.

[MitziG 95]

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!

I think Gemini made some good points- could be another autoimmune issue going on, and I would investigate that possibility first. As far as reacting to tiny bits in the house though- absolutely possible. Visit the super-sensitive forum and you will see what I mean. It only takes a tiny molecule of gluten to trigger an immune response in some people. Both of my kids fall into that category and have reacted to gluten on doorknobs and a computer keyboard. Not visible crumbs- we are talking about Grandma visiting and eating a sandwich and then using the computer before washing her hands. They both threw up all night. We have a zero-gluten tolerance policy in the house now. It is difficult for you to know for sure though, since your son is asymptomatic, I agree. If your investigations turn up nothing, and the numbers continue to stay high, I would give serious consideration to taking the whole house gluten free though. It sounds intimidating, but it is really easier in the long run!

[Gemini 836]

I have a call into our GI about the latest blood work. I did find some from when we did the biopsy and he was still on gluten.

IgA-Endomysial 59 (low: 22 high:157)

Gliadin IgG- 17 (<20)

Gliadin IgA- 6 (<20)

tTG IgA0 126 (<20)

Reference ranges in ( )

So what do normal Gliadin before going gluten-free mean?

I think I am just confusing myself.

OK....his IgG is inching towards the higher end of normal there and his tTg is really high. I am confused about the EMA (the first test listed) as that is usually not a number but a positive or a negative. It is highly specific for Celiac and when you have a positive EMA and a positive tTg, you have Celiac Disease, regardless of what a doctor may tell you. That information is virtually in every piece of medical literature out there. The fact that your son's biopsy was negative means nothing...he was very young at diagnosis and there probably wasn't enough time for him to sustain measurable damage

to his gut. It's hard sometimes to diagnose small children for these reasons. It also looks like you can't use blood work for dietary compliance because his AGA numbers aren't showing positive...except for that elevated IgG. It's not in the positive range but it is close to tripping into it and that's suspect. Blood work isn't always useful in diagnosing kids.

I will add one more comment regarding waxes on produce because it's important....I have yet to see, in 7 years gluten-free, any wax on any fruit or veggie that contains a gluten component. My diet is based on fruits and veggies heavily and I have never had a problem with them and I have recovered well for an extremely sensitive Celiac. Waxes are hard to digest anyway so if someone isn't washing their produce well and there happened to be some wax left on something that was ingested, that may cause a problem but it wouldn't be from gluten. I have never seen any literature which warns us about wax on produce being a danger so if someone thinks this is true, I would like to see where they got this information from. I would be very interested but from my standpoint, wax is not an issue. If it were, I would be dead by now.

If your son is feeling OK and otherwise not showing any symptoms that might be red flags, I would wait a while longer and see what happens with his tTg.

He has so many food intolerances and allergies, it might take time for his system to calm down. Don't freak out about this but play the patience game.

Keep on doing what you have been doing but I would not test food myself...there's no need to. Figuring out what is gluten-free and what is not isn't rocket science. Plus, he has so many other foods he can't have, you are probably scrutinizing everything well enough.

[MitziG 95]

I will add one more comment regarding waxes on produce because it's important....I have yet to see, in 7 years gluten-free, any wax on any fruit or veggie that contains a gluten component. My diet is based on fruits and veggies heavily and I have never had a problem with them and I have recovered well for an extremely sensitive Celiac. Waxes are hard to digest anyway so if someone isn't washing their produce well and there happened to be some wax left on something that was ingested, that may cause a problem but it wouldn't be from gluten. I have never seen any literature which warns us about wax on produce being a danger so if someone thinks this is true, I would like to see where they got this information from. I would be very interested but from my standpoint, wax is not an issue. If it were, I would be dead by now.

From this website:

http://www.fda.gov/Food/LabelingNutriti ... 487.htm#q8

Are there examples of food products that are naturally "gluten-free"?

Yes. The following are examples of, but are not limited to, foods that are naturally gluten-free:

[Gemini 836]

From this website:

http://www.fda.gov/Food/LabelingNutriti ... 487.htm#q8

Are there examples of food products that are naturally "gluten-free"?

Yes. The following are examples of, but are not limited to, foods that are naturally gluten-free:

[1974girl 24]

I have only been into this for a month now so take what I am saying for all it's worth. But my 11 yr old was tested in my hometown and had a Ttg of 160. Wow. She has a thyroid condition that we found at age 7 only by noticing she was shorter than other and trending down on the chart. (Weight was always normal) The doctor said that people often think that overweight kids have a thyroid problem but the main sign in children is that they don't grow. (Is your son short for his age?) So fast forward to last month. We had her tested for celiac just because it sometimes runs with thyroid problems. No symtoms at all yet her Ttg was 160. We were sure she had a ton of damage and so was the GI doctor. He decided to run his own labs again. We were now in a hospital 3 hours away and they sent it to a different lab. She was 7. Ok, she went from Ttg 160 to 7 in two weeks without any diet changes. Uh, I don't think so. My pediatrician at home is questioning the lab she uses now. When the GI came out of her scope, he said he didn't see any damage like he usually sees in celiac patients. But he took biopsies anyway. We were shocked because at 160, he should have been able to tell. Her biopsy showed blunting which is the beginning. So we have caught it early but there was hardly any damage at all and we thought the Ttg showed damage. Only one biospy even showed that, the rest were normal. They are still ruling it celiac becuase she also has the genes and the other antibodies. I saw all of that to say this.... I am convinced that labs are very different!

[MitziG 95]

That's an extremely generic statement regarding the wax issue. It does not state there are some that contain gluten at all, it sounds like a CYA statement from someone who has no clue on the subject. This is the type of stuff that becomes misleading for people. I did my research on this when I was first diagnosed and never came up with any reputable source to prove there is gluten in produce wax.

Most people wash their fruit and veggies before consuming them, which would remove any wax from the produce. If you don't do that, then you would be eating a small amount of wax but it's just wax. No reputable Celiac organization that I have ever read info from lists produce wax as a danger. I consume large quantities of fresh produce daily and and if there were any gluten in there at all, I would definitely be in the hospital or dead by now. Well....maybe not because I wash my produce well before eating it. Wax will cause GI grief for some, like gums do. I know because I have severe reactions to gums if I sustain a good enough hit. It would be especially true for those still healing. GI distress is not always caused by gluten or trace amounts of gluten, as much as some like to think.

Fair enough. I was just making her aware of the possibility.

[StephanieL 74]

Thanks all. I do appreciate all the input! Really, it is helping us work through this.

I got his labs in the mail today for this trip.

Gliadin IgG Abs 5 (Low is <20)

Gliadin IgA Abs 5 (Low is <20)

Endomysial IgA Abs <1:10 (Low: DLT 10)

So, there you have it

[StephanieL 74]

So the Dr. ordered a pre albumen, Free T3 and iron tests. I assume they are looking for Hashimoto's given his THS from last week too.

This is just so frustrating and I hate hate hate all of this for my sweet kiddo

[pricklypear1971 355]

Hang on, he had a high tsh?