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How Long Until The Ttg Numbers Drop?

angelhair45

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angelhair45 Newbie
angelhair45
Posted

My son has been on the gluten free diet for almost 3.5 months and his ttg is at 278. It was in the 300's when he was first tested. The doctor thinks he must be getting gluten, but I cannot figure out from where. He's never had symptoms except for being very thin, and since being gluten free he has gained 4 pounds, so I thought that was a good sign. I'm not sure if I should be worried of if it's normal for it to take a while for the numbers to drop.

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Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

I think everyone is going to be different. My TTG number was >100. I didn't get an exact number. I was retested after a year and it was 3 which is negative.

3.5 months doesn't sound that long for his numbers to go down significantly. Hopefully someone else will chime in here that knows more than I do. A lot of doctors don't even re-test until 6 months or a year.

I don't know if you have a mixed household or entirely gluten free. If mixed, could he be getting cross contamination? I have a mixed household, but mostly gluten free. My husband has his own toaster and I use a toaster oven. We use separate counters for gluten and gluten free items. If you have a mixed household, make sure the family is not double-dipping into jars like peanut butter, butter, jelly, etc because once the knife touches the bread and then is put back into the jar, the jar is cross contaminated.

You probably already know all of this and he may not be getting any gluten at all. Sometimes it just takes a while for the body to heal. If you are new to this, there is a great book "Living Gluten Free for Dummies". This was the first book that I bought and put everything into perspective for me. There are also numerous posts which tell you which items to replace such as scratched non-stick pots and pans, wooden utensils, plastic utensils, plastic collander, cutting boards, toaster.

Gemini Experienced
Gemini
Posted
My son has been on the gluten free diet for almost 3.5 months and his ttg is at 278. It was in the 300's when he was first tested. The doctor thinks he must be getting gluten, but I cannot figure out from where. He's never had symptoms except for being very thin, and since being gluten free he has gained 4 pounds, so I thought that was a good sign. I'm not sure if I should be worried of if it's normal for it to take a while for the numbers to drop.

There are other reasons why tTg numbers do not fall quickly. The other possibility is that your son may have one of the other autoimmune problems that often go in tandem with having Celiac Disease. Hashimoto's thyroid is one of them and can cause elevated tTg levels.

What were the results of his AGA IgA and IgG repeat testing or did the doctor only repeat the tTg? These other 2 tests are done to see if gluten is getting in somewhere in the diet. Many doctors also do not gauge recovery from a tTg alone because of the other diseases that can cause it to be elevated. My tTg was well over 100 and could have been as high as 200 at time of diagnosis but most labs stop at 100 because if your tTg is that high, you don't have to go any further....somethings wrong. I would suggest repeating the ones I mentioned above and if they are in the normal range, then it may be another autoimmune problem that's causing the higher numbers. Or it could be as Jenny mentioned.....in some people, it can take a long time for numbers to drop into the normal range.

I had repeat testing done after 1 year and not before because of this and mine were beautifully normal by then!

This is why you do more than one test to gauge recovery and adherence to the gluten-free diet because one test is not enough. Like you said, if he has gained weight and is becoming asymptomatic, then it's unlikely he is being exposed to gluten.

angelhair45 Newbie
angelhair45
Posted
  • Author

He also has type 1 diabetes, but his thyroid is normal. I'm not too keen on this doctor, he just seems somewhat manipulative or something. They have only run a ttg, no other tests. He was asymptomatic to begin with so that doesn't help us. They only caught it because of the diabetes and vitamin D and Calcium were very low. Those levels are up now along with weight gain and growth. He wants his number at 0. It seems like that is asking a lot from the 300's in just 3.5 months.

Gemini Experienced
Gemini
Posted
He also has type 1 diabetes, but his thyroid is normal. I'm not too keen on this doctor, he just seems somewhat manipulative or something. They have only run a ttg, no other tests. He was asymptomatic to begin with so that doesn't help us. They only caught it because of the diabetes and vitamin D and Calcium were very low. Those levels are up now along with weight gain and growth. He wants his number at 0. It seems like that is asking a lot from the 300's in just 3.5 months.

That explains it then! I believe Type 1 diabetes will also elevate tTg levels but you can google it and see if I have that correct. There were a number of them listed and, as your son has 2 autoimmune problems, it is no small wonder he is still elevated after only 3 1/2 months. See, your intuition is talking to you about this doctor and the reality of recovery times. ;)

I have 4 autoimmune problems, including Celiac. I do not have diabetes (my brother does) but have Hashi's. My tTg level is in the normal range now because my thyroid has responded wonderfully to the gluten-free diet also. When you work on the cause of all the other problems, Celiac being the root cause, the others will respond in fashion and start to improve also. It took me 3 1/2 years, approximately, to accomplish this totally, meaning numbers coming down, symptoms subsiding completely and my thyroid meds needing to be reduced in dosage. It took 1 year to make my blood work look much better. I think you need a new doctor because the odds of your son reducing his tTg to 0 with 2 autoimmune diseases, even being scrupulous about the diet, are next to none. Any good doctor knows that.

The 2 tests I mentioned, the AGA IgA and AGA IgG, are the ones used to monitor whether you are still ingesting gluten. Those are the ONLY 2 that need to come as low as possible. My last numbers run were a 3 and a 4 for these (with normal considered anything under 10) and my doctor thinks this outstanding. From what I have read and been able to learn from the medical profession is that obtaining a zero on these 2 is pure luck at the time of the blood draw. If your son gets these in the low normal range, he is not ingesting gluten and his tTg may be from his diabetes also. Give it time.....3 1/2 months to normal is a joke!

It is very hard to work with a control freak doctor....they do not listen. If he poo-pooh's what I have told you, find a better doctor. I went through MANY before I found one who wasn't clueless.

Do not get all worried about this, either. Sounds like your son is doing much better. Weight gain, growth and better vitamin levels are telling you this but he needs more time to heal completely.

GFM Apprentice
GFM
Posted

I'll share my son's experience. He was diagnosed in April 2007 with Celiac at 8 yrs old. His major symptom was falling off the growth chart. He also had stomach aches, but nothing that would keep him from his activities. His initial EMA results were 1:20,480 and was confirmed Celiac by a biopsy. Over a year, his EMA numbers came down and he grew back to where he should be on the growth chart, but he never tested negative despite us being extremely careful about the gluten free diet. The doctor thought my son was getting gluten somewhere, and I knew my son wasn't cheating on the diet. We wrote down what he was eating and even the dietitian said to continue just as we were and that it would take time. In the fall of 2008, his EMA number shot back up to almost what it was at diagnosis. At this point, his doctor added the ttg test since it is automated and not as subject to human error as the EMA. Anyway, this time the dietitian recommended eliminating some products that are technically "gluten free", but could possibly be cross contaminated. We did this (among other things) and 6 months later he tested negative on both the EMA and ttg tests. I'm still not entirely sure what the exact cause was, but I'm convinced it was cross contaminatin issue. It's difficult to tell since thoughout this time he was growing and the stomach aches had gone away. I'm not an expert and I don't know what other autoimmune diseases can keep test results positive, but my advice is to not rule out the possibility of cross contamination.

Gemini Experienced
Gemini
Posted
I'll share my son's experience. He was diagnosed in April 2007 with Celiac at 8 yrs old. His major symptom was falling off the growth chart. He also had stomach aches, but nothing that would keep him from his activities. His initial EMA results were 1:20,480 and was confirmed Celiac by a biopsy. Over a year, his EMA numbers came down and he grew back to where he should be on the growth chart, but he never tested negative despite us being extremely careful about the gluten free diet. The doctor thought my son was getting gluten somewhere, and I knew my son wasn't cheating on the diet. We wrote down what he was eating and even the dietitian said to continue just as we were and that it would take time. In the fall of 2008, his EMA number shot back up to almost what it was at diagnosis. At this point, his doctor added the ttg test since it is automated and not as subject to human error as the EMA. Anyway, this time the dietitian recommended eliminating some products that are technically "gluten free", but could possibly be cross contaminated. We did this (among other things) and 6 months later he tested negative on both the EMA and ttg tests. I'm still not entirely sure what the exact cause was, but I'm convinced it was cross contaminatin issue. It's difficult to tell since thoughout this time he was growing and the stomach aches had gone away. I'm not an expert and I don't know what other autoimmune diseases can keep test results positive, but my advice is to not rule out the possibility of cross contamination.

What is confusing me a bit is the fact that the EMA test is not a test used for monitoring possible gluten consumption in a Celiac. It is either a positive or negative result and is used solely for diagnosis of Celiac Disease. It is a very specific test and a positive pretty much is a slam dunk for celiac disease, along with a positive tTg.

The above mentioned tests in my other post are the ones used to monitor gluten ingestion and those 2 need to be as low as possible. The tTg is also influenced by other autoimmune diseases so is rarely considered a diagnosis unless other Celiac panel tests are positive. While CC is always a possible consideration, unless the AGA IgA and IgG tests are re-run and come back positive, there is no reason to believe CC is a problem, especially if the patient is asymptomatic and recovering well in other aspects of the disease. If the tTg alone is still elevated, the other panel tests NEED to be re-run also AND other autoimmune problems need to be taken into consideration. The whole picture needs to be looked at, not just one test.

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GFM Apprentice
GFM
Posted

I apologize Gemini if I have somehow offended you. I wasn

Gemini Experienced
Gemini
Posted
I apologize Gemini if I have somehow offended you. I wasn

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