Continued High Antibodies Off Gluten

[emilyanne]

First time poster. I was diagnosed two years ago with celiac disease. I have been very strict and vigilant with contamination and ingredients. my antibody level (TTG Iag) was way higher then it should have been in September. so i moved out of the house i was living in (because roommates ate gluten but we had separate kitchens), my doctor thought that was the source.

now, four months later, my levels haven't gone down at all. i have gone through everything with a fine tooth comb. and while I'm sure that i get contaminated from touching things that people have touched after eating gluten out in the world (and then touching my face?), i cannot come up with an explanation for the levels being as high as they are.

has anyone had experience with this?

does anyone have advice?

i would appreciate any help or suggestions you might have.

[ravenwoodglass]

Have you checked your toiletries, shampoos and conditioners, makeup, all medications need to be checked, generic scripts need to be checked every refill. Supplements need to be checked, some will say gluten free but still have wheat or barley grass so they are not really safe despite the label. Do you drink Rice Dream rice milk? It says it is gluten free but it is not. Pet foods, craft and home repair stuff, pet litters, etc can all be sources of CC. Do you have a significant other who is a gluten eater? If you do then do make sure they brush their teeth before kissing. Do you consume distilled gluten grain alcohols and vinegars, most of us are fine with them but some of us react. If your antibodies are still going up you are still getting gluten somewhere.

[emilyanne]

all this can feel so scary. and defeating. like i've failed. thanks for the reply, on your list you said CC in house hold items, what is CC? is that how it is labeled on things? i do consume distilled vinegar, but never if it specifically says grain or malt on it. so that is something i can cut out. also i eat out at restaurants that are gluten free friendly, but maybe that is a source of more contamination then i realized.

again, thanks for the reply.

[Jestgar]

CC is our shorthand for cross contamination - what you might get from a gluteny kiss, or cooking in a pot that is used to cook gluten - that sort of thing.

If you aren't symptomatic when you eat gluten I can imagine it would be really difficult to know if you are getting glutened. I know I can expect to get zapped most times I eat out, and any time I eat something someone else has made. To protect myself I choose to go to restaurants that are normally gluten light, like Mexican or Vietnamese.

[Gemini]

First time poster. I was diagnosed two years ago with celiac disease. I have been very strict and vigilant with contamination and ingredients. my antibody level (TTG Iag) was way higher then it should have been in September. so i moved out of the house i was living in (because roommates ate gluten but we had separate kitchens), my doctor thought that was the source.

now, four months later, my levels haven't gone down at all. i have gone through everything with a fine tooth comb. and while I'm sure that i get contaminated from touching things that people have touched after eating gluten out in the world (and then touching my face?), i cannot come up with an explanation for the levels being as high as they are.

has anyone had experience with this?

does anyone have advice?

i would appreciate any help or suggestions you might have.

The correct test for monitoring dietary compliance is not the tTg test but the AGA IgA and AGA IgG blood tests. This happens all the time and I cannot figure out why so many doctors make this mistake. The reason why they should not use the tTg is because there are more autoimmune issues which may cause a high reading, like Hashimoto's thyroid disease, autoimmune liver disease, to name a few. If your tTg levels are still high, it could be that you have another autoimmune problem going on which hasn't been picked up on. I would have your doctor repeat the 2 tests I listed for compliance to see what they show. If they are negative, you aren't ingesting gluten.

Touching an object which others may have touched, even after having a gluten filled lunch, will not cause you to become sick. You would have to pick up crumbs on your hand and swallow them into your GI tract for that to happen. If people had to worry to such a degree, they would never be able to leave their houses. Eating out in restaurants is always a risk but can be a small risk if you know the restaurant well and how careful they are with providing food for Celiacs. I would not recommend going out as much as the general population does, though.

You sound like you have been careful and taken the time to get things correct so I would insist on those other tests to see what they show.

[weishy]

First time poster. I was diagnosed two years ago with celiac disease. I have been very strict and vigilant with contamination and ingredients. my antibody level (TTG Iag) was way higher then it should have been in September. so i moved out of the house i was living in (because roommates ate gluten but we had separate kitchens), my doctor thought that was the source.

now, four months later, my levels haven't gone down at all. i have gone through everything with a fine tooth comb. and while I'm sure that i get contaminated from touching things that people have touched after eating gluten out in the world (and then touching my face?), i cannot come up with an explanation for the levels being as high as they are.

has anyone had experience with this?

does anyone have advice?

i would appreciate any help or suggestions you might have.

OMG... i don't know if you're still around... but my son has the same problem. he's a pretty good kid, the mature type and listens pretty well to direction and likes routines... so he's not eating other kids foods, or sneaking other things while at school.. but when he doesn't wash his hands after touching other things that other 'gluttoned' individuals have touched.. he gets all the old gluten symptom if he then proceeds to eat his snack without washing his hands. it was a problem with him the first two weeks of school (kindergarten) where he refused to wash his hands (because the sink was out in the common area and not in the privacy of the bathroom) and all of his old symptoms flared back up and it kept getting worse and worse. his celiac specialist said he was 'hypersensitive' to gluten and basically to stay the heck away from gluten. the specialist has a good background...part of the warren celiac research center, went to brown university, one of the directors for the children's hospital...so i'm guessing she think's it's possible. though i already believed it to be possible because my other son (also gluten issues) had the same problem.

our life is a little crazy with all the amount of washing we do so we minimize the contamination of the house... changing clothes (at least the pants if they went out to the playground or sat in a public chair), washing toys that come into the house.....

seriously... at times i don't know if i should cry. eating out is sad... the kids have to sit there and not touch a darned thing until they're done eating all of their food. i feel like their childhood has been robbed.

at times i feel like maybe i did this because of all the crap i ate when i was pregnant. you realize what's 'junk' when you're on a gluten free diet and i ate JUNK. i just didn't know any better until now.

okay.. going to wallow in my misery for now.

[weishy]

The correct test for monitoring dietary compliance is not the tTg test but the AGA IgA and AGA IgG blood tests. This happens all the time and I cannot figure out why so many doctors make this mistake. The reason why they should not use the tTg is because there are more autoimmune issues which may cause a high reading, like Hashimoto's thyroid disease, autoimmune liver disease, to name a few. If your tTg levels are still high, it could be that you have another autoimmune problem going on which hasn't been picked up on. I would have your doctor repeat the 2 tests I listed for compliance to see what they show. If they are negative, you aren't ingesting gluten.

Touching an object which others may have touched, even after having a gluten filled lunch, will not cause you to become sick. You would have to pick up crumbs on your hand and swallow them into your GI tract for that to happen. If people had to worry to such a degree, they would never be able to leave their houses. Eating out in restaurants is always a risk but can be a small risk if you know the restaurant well and how careful they are with providing food for Celiacs. I would not recommend going out as much as the general population does, though.

You sound like you have been careful and taken the time to get things correct so I would insist on those other tests to see what they show.

ok...i tried posting a previous message and it looks like it didn't post. actually my doc who is part of the children's hospital, part of the warren celiac center, had gone to brown university believes that there is such a thing called being 'hypersensiive' to gluten. that is you can get gluten off of objects used by other persons who has gluten on their hands. if you want to call and ask... ask for dr. newton at childrens hospital san diego.

[Gemini]

ok...i tried posting a previous message and it looks like it didn't post. actually my doc who is part of the children's hospital, part of the warren celiac center, had gone to brown university believes that there is such a thing called being 'hypersensiive' to gluten. that is you can get gluten off of objects used by other persons who has gluten on their hands. if you want to call and ask... ask for dr. newton at childrens hospital san diego.

I am also as sensitive as they come but do very well in the real world. You have to ingest gluten for it to start the whole chain of events which lead up to symptoms and damage. What this doctor is describing sounds more like an allergy to me and it's entirely possible for a Celiac to also have a wheat allergy.

If being compliant involves a younger child, that can be hard. They don't always remember how vigilant they need to be. They're kids...they can't always help it.

I once became violently ill from not washing my hands after handling wheat bread so know what hyper-sensitive is all about. However, I am not sure if more severe reactions have anything to do with how sensitive a person is because people naturally have varying levels of discomfort. If your doctor is not running the AGA IgA/AGA IgG tests, along with the tTg, then you have no way of knowing if your child is ingesting gluten. tTg cannot be used alone to re-check. This, of course, only applies to those who are serio-positive, unfortunately.

[rdunbar]

Are you using dairy? I believe your body can confuse casien with gluten , and reacts to it the same way by producing the antibodies. I was off of gluten for over 2 years, but did'nt start getting better until i kicked the dairy @ 3 months ago.

[6ft6]

I know exactly how you feel and you are not alone. Are you on any medications, prescription or over the counter? I keep having problems of pharma companies change their formulation or generic mfg provider and then a drug that was safe starts to make me gradually worse and worse and worse, until I can't even stop the tremors or even get out of bed. I've been two years trying to be gluten-free now, and am failing miserably. You have to start with the basics - raw fruit, veggies, plain rice, baked potato, unseasond meat or fish. that sort of thing. Watch out for the chicken and pork - often have additives that contain gluten. Then add some special certified gluten-free treats.

Clean the kitchen and get rid of any plastic, wood, or nonstick that has ever touched gluten. Scrub everything. Hopefully that will give you a start and good luck!

[Gemini]

I know exactly how you feel and you are not alone. Are you on any medications, prescription or over the counter? I keep having problems of pharma companies change their formulation or generic mfg provider and then a drug that was safe starts to make me gradually worse and worse and worse, until I can't even stop the tremors or even get out of bed. I've been two years trying to be gluten-free now, and am failing miserably. You have to start with the basics - raw fruit, veggies, plain rice, baked potato, unseasond meat or fish. that sort of thing. Watch out for the chicken and pork - often have additives that contain gluten. Then add some special certified gluten-free treats.

Clean the kitchen and get rid of any plastic, wood, or nonstick that has ever touched gluten. Scrub everything. Hopefully that will give you a start and good luck!

Maybe it's the quality of chicken and pork that I buy but I have never seen any chicken or pork, unless marinated or breaded, which contains a gluten component. Processed meats may be suspect and have to be checked but fresh kill pork or chicken will not.

You do have to double check meds but again, most today are being formulated gluten-free. I do not take much in the way of medications but on the occasional times when I did, I had no trouble finding out their gluten-free status. You have to call the manufacturer. If they sound wishy washy on the information, I do not use their product and obtain something else which is gluten-free. I make it a point to tell them that they need to be more informative to the public about gluten-free status or they will lose business.

If someone is not doing well on the gluten-free diet, then it may be due to other food intolerances....which are common to Celiacs. If you become too focused on gluten, you may be missing another problem.