Iga Anti-t.tg Levels Still High

[Lisa79]

I had a recent follow up blood test IgA Anti-t.Tg and they came back at 26 which is still too high. They were 127 when I was first diagnosed.

For the last 4 months, I have been so careful with contamination and with what I eat, some people think I go overboard. But I don't want to risk anything. Now I am confused as to why?

Did anyone else have this problem? I saw my GP who just suggested going back to see the GI. I have an appointment in a couple of weeks.

[ravenwoodglass]

It can take some time for the antibodies to leave your system. You have had a substantial drop in the last 4 months which shows your doing pretty good on the diet. How are your symptoms? Have they improved?

[Lisa79]

Thanks, since going gluten-free I have been feeling a little better, not 100% but improvement, bloating gone, headaches less often. I suffered major constipation prior to diagnoses which seems to have improved greatly since going gluten-free.

I am still having bad anxiety and lower back pain occasionally. The anxiety I have noticed really effects my digestive system too so thats something I am trying to get under control.

My 5yr old daughter has had a positive blood and goes for a biopsy in a few days. Which has added a little stress too.

Thanks for the reply

[ang1e0251]

I would say you've made great improvements. I've seen numbers from others who took a year or more to get where you are. You're to be commended on working so hard on your diet. Your daughter will reap the benefits of your diligence.

[Lisa79]

Thanks very much, thats made me feel alot more at ease, I have been worried, thinking what am I doing wrong and it should be right down, I didnt realise it could take a long time.

I think once DD has her biopsy we will have less chance of contamination as we will not have as much if any gluten in the house.

Thanks

Lisa

[S-J-L]

Hi,

I am having the same problem-im so upset.

I got diagnosed around april last year and my levels were 164. Then in december it was 38, and now its 40 again. I can't think of where the gluten could be hiding!

I have major issues of being underweight-bmi of 16. The doctor doesnt see me putting on any weight until these levels are normal.

Am i allowed to eat food that says 'is produced on a line that produces gluten-containing products'??

[ravenwoodglass]

Hi,

I am having the same problem-im so upset.

I got diagnosed around april last year and my levels were 164. Then in december it was 38, and now its 40 again. I can't think of where the gluten could be hiding!

I have major issues of being underweight-bmi of 16. The doctor doesnt see me putting on any weight until these levels are normal.

Am i allowed to eat food that says 'is produced on a line that produces gluten-containing products'??

I avoid anything processed on the same lines, a lot of us do. Another thing to look at is nonfood sources of gluten, if you haven't eliminated them already. Things like your toiletries, pet foods and litters, arts and crafts and home repair items can all be a problem. Check all your meds, OTC and script (generic are the biggest risk because they can change binders at will) vitamins, some will contain stuff like wheat or barley grass that are defined as gluten-free but that many will not tolerate.

[marthamom]

Hi Everyone,

I'm in kind of the same boat---I was diagnosed in September '08; my antibodies were checked in January and were down to 39, and when they were just checked again at the end of June they were down a bit to 31, but still not "normal." It's really discouraging---I am really really careful about what I eat, so I'm hoping that it's just taking time and will keep going down to the normal range. I'm going on 11 months now since diagnosis---the whole process is much slower than I had thought it would be.

My house is not gluten free (my husband and 5-year old son aren't gluten free), but I try to be really careful--I use a different toaster, different colander, different pots for cooking pasta, etc., different cutting board. And I never put my food directly on the counter and am pretty compulsive about wiping the counters and washing my hands well after I make a sandwich for my son, etc. We do keep our dog food in the kitchen pantry---do you think that could be a problem? I usually dont' feed the dog, and if I do I wash my hands really well after I feed her.

I'm still having a fair amount of GI symptoms as well, which I guess may just be indicating that my intestines aren't well healed yet. When I was diagnosed, my doctor said that I had near total villous atrophy. On the plus side, I haven't had a migraine since I've been diagnosed, and my anxiety levels have been much lower in general......

...but not so low that I don't worry about ending up with refractory celiac, or thinking that the longer it takes my intestines to heal the more at risk I am for cancer, etc.....anyone else have the same worries?

[Lisa79]

I am extra careful, I try not to have anything that could have possible traces, I also am very anal at home with cleanliness, also having separate butters, jams, toasters, boards. Apart from the bread the whole house is gluten-free, but unfortunately bread is the most worst product for contamination.

I haven't seen the GI as yet, my appointment is on the 27th when he will probably do another test.

Check all Meds carefully, you may need to ring the pharmaceutical company, I have found out one I am taking could have gluten, but I have been told its so small traces. If my levels have gone up or not improved on my next test I will have to stop that medication.

Its so disheartening when you have tried so hard and then get so worried why they are not down to normal levels after more than 4 months.

[oceangirl]

Hi.

It took two FULL years for my antibody levels to get in the normal range- AND, during that time, I ate ONLY whole foods I cooked myself from scratch. Because I am ridiculously sensitive (something I would never have believed until living through it) my family ultimately went gluten-free (two teenagers and my spousal equivalent) AND the 4 dogs, 5 cats are gluten-free as well. Only the bodasious in-house rabbit isn't (she gets some pellets with wheat every day but mostly fresh greens) This really helped with the constant cc. I am now 4 years in.

It takes time...hang in there,

lisa

[LDJofDenver]

Hi.

It took two FULL years for my antibody levels to get in the normal range- AND, during that time, I ate ONLY whole foods I cooked myself from scratch. Because I am ridiculously sensitive (something I would never have believed until living through it) my family ultimately went gluten-free (two teenagers and my spousal equivalent) AND the 4 dogs, 5 cats are gluten-free as well. Only the bodasious in-house rabbit isn't (she gets some pellets with wheat every day but mostly fresh greens) This really helped with the constant cc. I am now 4 years in.

It takes time...hang in there,

lisa

I am so glad to read your post! My levels keep nudging down, but not any significant leaps and bounds. I thought it (the slow progress) may be because of occasional accidental glutening (something presumably "safe" at restaurant, a friend's house, etc.). Because I'm very careful at home with same precautions mentioned in other posts above, including washing my hands before and after almost everything! When I told my friends and husband that my latest re-check only came down one point they were flabbergasted. All said, "but you're so careful."

So I'm glad to hear that it took that long even for someone only eating whole foods. It will be a year in August for me.

[heatherjane]

At my support group meeting last week, our resident dietician stated the following in a presentation:

- The intestines can take up to 2 months to heal

- 3-6 months may pass before the individual begins to feel noticeably better

- Complete recovery can take up to 5 years in some cases

I can't remember her source for the info (I can ask at the next meeting), but it makes sense to me. I guess the key is just to stay diligent. I've been frustrated at my continually slow healing after 6 months gluten-free, but I've had several people tell me not to stress and just keep at it. You're on the right track by just being on this diet, and as you learn more, modify your lifestyle as necessary. Take it step by step, otherwise it will overwhelm you.

[oceangirl]

LDJ,

Yes, it is a long road, I must say. But during those initial 2 years and even now I remind myself that I am insanely sensitive to gluten and accidental involvement with it seems difficult to completely avoid. But I feel the best I have in years (except from some annoying menopausal symptoms which I'm trying my best to ignore...) and when I do feel glutened, I always go back to my ABSOLUTELY trusted foods until it passes.

Good luck and good health to you!

lisa

[LDJofDenver]

LDJ,

Yes, it is a long road, I must say. But during those initial 2 years and even now I remind myself that I am insanely sensitive to gluten and accidental involvement with it seems difficult to completely avoid. But I feel the best I have in years (except from some annoying menopausal symptoms which I'm trying my best to ignore...) and when I do feel glutened, I always go back to my ABSOLUTELY trusted foods until it passes.

Good luck and good health to you!

lisa

Thanks Lisa! Hopefully it will just keep coming along. It just gets frustrating when you know how careful you've been. Guess I was expecting to be fully restored to normal by now, and that's just not how it works.

Thankfully, I've got those annoying menopausal things behind me :P