How Long For Iga To Decrease?

[masterjen]

I had my first IgA blood test almost 4 months ago, and the level was stated as >200 (normal at the clinic I go to is <20). At the time I was eating a lot of gluten (I loved cereal, and always went for the so-called healthy ones with all the whole grains, such as Shredded Wheat, Muslix, Oatmeal with added wheat bran, etc. ). I've been gluten-free ever since a biopsy in mid-Feb. After that test/diagnosis I donated or tossed out all my gluten and potentially-gluten food, vacuumed and washed my cupboards and counters, and quit eating out, so I'm positive I'm eating gluten-free (I live alone, so no cc). I've been largely eating only whole foods (fruit, veggies, meat/poultry), with no added sauces (even if they do say gluten-free). The odd time I will treat myself to a non-whole food (such as a nutrition bar), and I have been eating (and rarely) only processed foods that I have been able to confirm as gluten-free (by calling the manufacturer or checking this website/forum). I have even checked shampoos, hand/face creams, people I kiss (lol), etc.

So, I've gone from a fairly high level of gluten intake (particularly in the 2 weeks or so before that first IgA test, as I was advised to by my doctor), to no gluten. Is 4 months not enough time for the IgA level to decrease when someone is seriously gluten-free??

[Heather's Mom]

I don't have any good invormation for you, but will be very interested to hear some of the replies. I posted a few posts ago about my daughter who had a 172 and after 6 months she is at 28. Not good enough, needs to be below 20 as you said.

We have been strictly gluten free. I've been beating myself up over the last few days trying to figure out where she is getting hidden gluten, but maybe we have been doing just fine and it just takes a while for the level to come down.

I'm also suspicious of the trip to Disney (gluten free obsessed I might add) 10 days prior to the blood draw. Next time I won't schedule the blood draw right after we get back from vacation.

Good luck to you.

[clogger69]

I don't have any good invormation for you, but will be very interested to hear some of the replies. I posted a few posts ago about my daughter who had a 172 and after 6 months she is at 28. Not good enough, needs to be below 20 as you said.

We have been strictly gluten free. I've been beating myself up over the last few days trying to figure out where she is getting hidden gluten, but maybe we have been doing just fine and it just takes a while for the level to come down.

I'm also suspicious of the trip to Disney (gluten free obsessed I might add) 10 days prior to the blood draw. Next time I won't schedule the blood draw right after we get back from vacation.

Good luck to you.

I don't know if this will help, I am in the older crowd on this board. When DX with Celiac in March 2009 I was told my Feb. 2009 blood work showed a 319. The nurse said this was high, which meant nothing to me being new to all of this. In May 2009 blood work showed 104. This is at gastro Dr. office. My primary Dr. that I see every 3-4 months is very good about doing regular blood work. So I was showing a steady down on the IgA. Sept.2009 was 25.4 and Jan. 2010 16.1. I was feeling good about this even though I don't feel good. Fatigue,joint pain, and I have gained 33lbs. Love carbs. I was not happy about the latest blood work of April 30, 2010. It was 19, up 3pts and I am so careful.My lab shows optimal range to be 0-10. The only thing I could think of that I was doing different was in the last 3 mo I have been having a bottle of diet A&W root beer every day. My understanding is that this is gluten free. I am going to stop the root beer and see what happens.

[tunibell]

I'm not sure what my TTG IgA was at diagnosis (the doctor who diagnosed me via blood/biopsy used a different testing scale than my current celiac specialist). My level at 6 mo gluten-free was 41, and at 12 mo was 27 (with <20 as normal). I have been extremely strict as well (never eat out, minimal processed food, etc.)

[dreemer406]

Hello....I am wondering the same thing. My IgA in the beginning of february 2010 was 175...Last week I had my numbers tested and it was only down to 169. I'm soooo upset I thought I had been doing a really good job. I do live with 3 small children and the risk of cross contamination is definitley there but I believed I was being cautious. I dont check my makeup or shampoos. Is that really an issue? How about hair dye? How long should it take for this number to drop? I feel so discouraged after hearing back from the nurse and blood test results. My symptoms have definitley improved in 4 months but not 100%. Any advice would be helpful!!! thanks!!

[Bluebee]

I had my first IgA blood test almost 4 months ago, and the level was stated as >200 (normal at the clinic I go to is <20). At the time I was eating a lot of gluten (I loved cereal, and always went for the so-called healthy ones with all the whole grains, such as Shredded Wheat, Muslix, Oatmeal with added wheat bran, etc. ). I've been gluten-free ever since a biopsy in mid-Feb. After that test/diagnosis I donated or tossed out all my gluten and potentially-gluten food, vacuumed and washed my cupboards and counters, and quit eating out, so I'm positive I'm eating gluten-free (I live alone, so no cc). I've been largely eating only whole foods (fruit, veggies, meat/poultry), with no added sauces (even if they do say gluten-free). The odd time I will treat myself to a non-whole food (such as a nutrition bar), and I have been eating (and rarely) only processed foods that I have been able to confirm as gluten-free (by calling the manufacturer or checking this website/forum). I have even checked shampoos, hand/face creams, people I kiss (lol), etc.

So, I've gone from a fairly high level of gluten intake (particularly in the 2 weeks or so before that first IgA test, as I was advised to by my doctor), to no gluten. Is 4 months not enough time for the IgA level to decrease when someone is seriously gluten-free??

I'm glad you asked this question because I'm sort of going through the same thing. I don't know if my story will help, but...

When I was first diagnosed two years ago, my IgA TTG was >100 (lab doesn't give a specific number above 100). My dr. rechecked at 6 months and it was down to 45. At one year, it was still at 45. At 1.5 years, it was at 35 and at my last check a few weeks ago, which is 2 years post diagnosis/gluten free, it was still at 35. I am 120% positive I am not eating gluten, so we're not too sure why it's still high. My doctor has suggested I revisit my GI to see what he says about it.

When I first saw my GI 1.5 years ago, he told me to wait at least 1 year after going gluten-free to retest the TTG as it can take that long to come down to normal. My regular dr. wanted to test more often for monitoring and I just didn't argue.

Finally, I've searched the primary medical literature until I was blue in the face trying to see if anyone has done a study on this. They have - some studies have found a rapid return to normal TTG levels after going gluten-free, while another study found that some people still have elevated levels after 5 years of gluten-free.

I guess the point it, prolonged elevated levels might be normal for some people - that is, it might just take some people's levels longer to drop back to normal. I don't know if there's been enough actual research on this yet for anyone to have a good answer.

[Bluebee]

Sorry - I meant to add that some dr's/researchers don't recommended using the IgA TTG test as a monitoring tool because there are conflicting results re. how long it normally takes for levels to come down.

[Gemini]

Hello....I am wondering the same thing. My IgA in the beginning of february 2010 was 175...Last week I had my numbers tested and it was only down to 169. I'm soooo upset I thought I had been doing a really good job. I do live with 3 small children and the risk of cross contamination is definitley there but I believed I was being cautious. I dont check my makeup or shampoos. Is that really an issue? How about hair dye? How long should it take for this number to drop? I feel so discouraged after hearing back from the nurse and blood test results. My symptoms have definitley improved in 4 months but not 100%. Any advice would be helpful!!! thanks!!

A few pieces of information for all of you who are way too hard on yourselves.....

According to the vast majority of Celiac specialists and researchers who have published books and articles on the subject, it can take up to 2 years for blood work to normalize and be in the happy range. Just because it is taking a long time for some in no way means you are ingesting gluten. If you are still symptomatic, then I would suspect ingestion on some level but for those who are asymptomatic after starting the diet, I would not get too upset with your numbers just yet.

The other extremely important issue, of which was partly mentioned by a previous poster, is you need to have both the Ttg and the AGA IgA/ AGA IgG run. You cannot base gluten ingestion on the Ttg alone because other autoimmune diseases can trigger a high Ttg. They are some of the autoimmune diseases associated with Celiac, like Hashi's thyroid disease and autoimmune liver disease, to name a few. The gluten (gliadin) protein is measured by the AGA IgA/ AGA IgG test, which specifically looks for the gliadin protein in your blood. If both of these tests are abnormal, then it could very well be that you are ingesting gluten. Without both, no doctor should be telling a patient that they must be ingesting gluten somewhere so don't drive yourself nuts going over your diet if the doctor doesn't have the foresight to run both tests. Demand what you need.

As far as shampoo, hair color and topical products are concerned, it is only an issue if you plan on ingesting them. Gluten cannot be absorbed through the skin as the molecule is too large so washing your hair with a gluten containing shampoo will not hurt you unless you swallow it or get it into your eyes or nose, which would then be ingested down your throat. I have a feeling not too many of you practice this on a regular basis. I color my hair every 4 weeks with salon color and if it could be absorbed through my head, I'd be dead from gluten poisoning by now. I went extremely grey at a very young age from malnutrition due to Celiac and have no choice in the matter. I don't have that lovely, silvery grey hair either so color me up!

I hope this helps and if I were most of you, I would demand both blood tests and see what happens from there. If you have been working hard at getting the diet right and not cheating, then don't go crazy thinking you are eating gluten. You probably aren't but you need the blood work to get started.

[Heather's Mom]

thank you, thank you, thank you for all who posted! I stopped beating myself up over the weekend and decided to stay the course for the next 6 months. I'm sure we are doing a good job of beign gluten free. It was a momentary panic on my part! I will talk to my doctor about getting the other numbers checked. Again, thank you so much!

[Gemini]

I'm glad you asked this question because I'm sort of going through the same thing. I don't know if my story will help, but...

When I was first diagnosed two years ago, my IgA TTG was >100 (lab doesn't give a specific number above 100). My dr. rechecked at 6 months and it was down to 45. At one year, it was still at 45. At 1.5 years, it was at 35 and at my last check a few weeks ago, which is 2 years post diagnosis/gluten free, it was still at 35. I am 120% positive I am not eating gluten, so we're not too sure why it's still high. My doctor has suggested I revisit my GI to see what he says about it.

When I first saw my GI 1.5 years ago, he told me to wait at least 1 year after going gluten-free to retest the TTG as it can take that long to come down to normal. My regular dr. wanted to test more often for monitoring and I just didn't argue.

Finally, I've searched the primary medical literature until I was blue in the face trying to see if anyone has done a study on this. They have - some studies have found a rapid return to normal TTG levels after going gluten-free, while another study found that some people still have elevated levels after 5 years of gluten-free.

I guess the point it, prolonged elevated levels might be normal for some people - that is, it might just take some people's levels longer to drop back to normal. I don't know if there's been enough actual research on this yet for anyone to have a good answer.

If Ttg levels have not normalized after 2 years, then you should look at the possibility that there is another autoimmune disease going on...which is perfectly normal for someone with Celiac. I have 4 autoimmune diseases total so it took a long time for them to quiet down on the gluten free diet. Yes, other issues may well improve once you have been on the diet for awhile.

My Ttg at diagnosis was over 200. My AGA IgA/ AGA IgG were both around 45, with a normal being under 5 for the lab which was used. I just had my 5 year post diagnosis blood work repeated and all my numbers were under 1.5, so you can see that numbers will normalize on a strict gluten-free diet but it took me 5 years to get them this low. They were in the higher normal range 1 year after diagnosis but normal high is not good enough for me! Having 3 other autoimmune diseases, on top of Celiac, is probably the reason this was so. I am not saying that you do have other diseases to boot but it's a possibility that should be looked into if your numbers stay outside of range.

[Bluebee]

If Ttg levels have not normalized after 2 years, then you should look at the possibility that there is another autoimmune disease going on...which is perfectly normal for someone with Celiac. I have 4 autoimmune diseases total so it took a long time for them to quiet down on the gluten free diet. Yes, other issues may well improve once you have been on the diet for awhile.

My Ttg at diagnosis was over 200. My AGA IgA/ AGA IgG were both around 45, with a normal being under 5 for the lab which was used. I just had my 5 year post diagnosis blood work repeated and all my numbers were under 1.5, so you can see that numbers will normalize on a strict gluten-free diet but it took me 5 years to get them this low. They were in the higher normal range 1 year after diagnosis but normal high is not good enough for me! Having 3 other autoimmune diseases, on top of Celiac, is probably the reason this was so. I am not saying that you do have other diseases to boot but it's a possibility that should be looked into if your numbers stay outside of range.

This is a really good point and one that myself and my doctor have considered. I have, however, been tested for pretty much everything and so far I'm clear. I should have mentioned that at least some of this evidence that levels can take a while to decrease comes from people without other autoimmune issues. So, at least some of the time, it seems to just take a long time for some people.