Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Ttg Results....what Do I Make Of This?
0

6 posts in this topic

Little background. My son, 11 years old, complain of stomach aches off and on since about beginning of year. Went to pediatrician and she ordered deamidated gliadin peptide IGA result 67 (<20). Referred to GI doc. Ordered total IGA which came back 184 (64-246) and TTG which came back <1. Didn't tell me range for that but can't get much lower than 1 so I guess it doesn't matter. Anyway, they say it definitely is NOT celiac. That's great, but why is the Gliadin so high? I asked if he could be in the early stages and not show up on his TTG, and they dismissed that idea. Said the gliadin sometimes shows up in people with other underlying conditions but didn't go into what that could mean. I'm not sure where to go from here. Take it as negative and move on, or continue to persue. I just don't want to miss something and then down the road they say it's celiac which was just too early to show up, which seems to be a common thread I have been reading. Any thoughts??

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi there,

About to head to get some sleep, but a quick note: there are a LOT of false negatives for the TTG. In fact, I never had a positive TTG (out of three times I tested) but I did do the endoscopy and clearly have damage to my sm intestine = a difinitive diagnosis for Celiac. Also, one of my daughters tested negative 2 out of 3 of her TTG tests (our other daughter was a very clear positive TTG). A positive TTG is a very accurate indicator of Celiac.

- Yes, I believe it's possible he could be in the beginning stages of Celiac. If this is the case, you might consider testing him annually to see if the TTG is triggered sometime in the not too distant future.

- I believe I had a low TTG because I had (over 40+ years) developed enough food aversions to effectively take myself off gluten inadvertantly and unknowingly (I avoided pasta, beer, pizza...). You may consider (heavily) gluten loading him for 3+ to 6 months and see if his TTG changes (this is how we triggered one daughter's TTG to a positive result).

All this said, I believe there is a lot to subjectively consider in looking at Celiac disease. Here is the list of things we considered as inputs for diagnosing our kids (and then me):

- Bloodwork (TTG, etc)

- Genetic testing

- Endoscopy

- Symptoms while eating gluten

- Easing of symptoms once off gluten (don't do this until you're done testing)

- Family history of Celiac, GI cancers, other related disorders etc.

Celiac can be easily definitive (in the case of one daughter with positive TTG, positive genetics, positive endoscopy, symptomatic, better off gluten) or more of an art (another daughter with eventual positive TTG, positive genetics, inconclusive endoscopy, symptomatic, better off gluten).

Hope this helps!

0

Share this post


Link to post
Share on other sites

Hi there,

About to head to get some sleep, but a quick note: there are a LOT of false negatives for the TTG. In fact, I never had a positive TTG (out of three times I tested) but I did do the endoscopy and clearly have damage to my sm intestine = a difinitive diagnosis for Celiac. Also, one of my daughters tested negative 2 out of 3 of her TTG tests (our other daughter was a very clear positive TTG). A positive TTG is a very accurate indicator of Celiac.

- Yes, I believe it's possible he could be in the beginning stages of Celiac. If this is the case, you might consider testing him annually to see if the TTG is triggered sometime in the not too distant future.

- I believe I had a low TTG because I had (over 40+ years) developed enough food aversions to effectively take myself off gluten inadvertantly and unknowingly (I avoided pasta, beer, pizza...). You may consider (heavily) gluten loading him for 3+ to 6 months and see if his TTG changes (this is how we triggered one daughter's TTG to a positive result).

All this said, I believe there is a lot to subjectively consider in looking at Celiac disease. Here is the list of things we considered as inputs for diagnosing our kids (and then me):

- Bloodwork (TTG, etc)

- Genetic testing

- Endoscopy

- Symptoms while eating gluten

- Easing of symptoms once off gluten (don't do this until you're done testing)

- Family history of Celiac, GI cancers, other related disorders etc.

Celiac can be easily definitive (in the case of one daughter with positive TTG, positive genetics, positive endoscopy, symptomatic, better off gluten) or more of an art (another daughter with eventual positive TTG, positive genetics, inconclusive endoscopy, symptomatic, better off gluten).

Hope this helps!

Thanks so much for the information. I am going to talk to the GI doc at more length about early stage celiac when we see him in November. I just think something must be going on if his gliadin IGA is high. Thanks again!!

0

Share this post


Link to post
Share on other sites

Your doctors are not up to speed, clearly. Gliadin tests are specific for GLIADIN. Your son is making antibodies to gluten. He has celiac.

Ttg tests are frequently negative. Even ONE positive test out of the whole panel warrants follow up. Since they aren't going to dx him based on MY opinion (go figure) request a biopsy be done. I would also ask for an EMA blood test while you are at it. If the biopsy happens to be negative (which is still likely, especially in early stages) two positive bloods may be harder for them to deny.

0

Share this post


Link to post
Share on other sites

Little background. My son, 11 years old, complain of stomach aches off and on since about beginning of year. Went to pediatrician and she ordered deamidated gliadin peptide IGA result 67 (<20). Referred to GI doc. Ordered total IGA which came back 184 (64-246) and TTG which came back <1. Didn't tell me range for that but can't get much lower than 1 so I guess it doesn't matter. Anyway, they say it definitely is NOT celiac. That's great, but why is the Gliadin so high? I asked if he could be in the early stages and not show up on his TTG, and they dismissed that idea. Said the gliadin sometimes shows up in people with other underlying conditions but didn't go into what that could mean. I'm not sure where to go from here. Take it as negative and move on, or continue to persue. I just don't want to miss something and then down the road they say it's celiac which was just too early to show up, which seems to be a common thread I have been reading. Any thoughts??

My daughter was diagnosed before the newer deamidated tests were available. I'm not positive that I totally have my facts right so if I'm wrong, hopefully someone will come along and correct me. As it is, maybe it will give you enough info to do a little online research.

In the "old" tests (I'm only talking about five years ago), a high IgA didn't necessarily mean Celiac (although it could) . . . it did imply inflammation or "something" going on "somewhere". GI's did the tTG and EMA testing which was more indicative. In the last few years, they have come out with the deamidated version which is much more specific to Celiac than the old IgA testing. It looks to me that your pediatrician is more up to speed with current testing (ordering the deamidated test) than the GI...??? You might want to bounce a few questions off of the pediatrician and I would definitely research the deamidated form of testing to ask about during your next appointment with the GI.

My daughter's GI was open to using the response of a trial diet to help diagnose . . . not all GI's are . . . but it doesn't hurt to ask.

You can always try the diet on your own after completing any testing. Your son does need to be consuming gluten in order for the testing to have a chance at being accurate. I do recommend trying to get an official diagnosis as it is helpful in getting accommodations in the school environment.

0

Share this post


Link to post
Share on other sites




The performance of the peptide AGA assay was excellent, showing a specificity and sensitivity of 90% and 92% for IgA, and 98% and 75% for IgG, respectively.

The above info is from "clinic immulogy" 2007. Either your doc is behind, or way ahead and we havent seen the info yet. I am voting for the former. The ped should have ordered the the IgG version, which has even greater specificity, but lesser sensitivity.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,691
    • Total Posts
      921,764
  • Topics

  • Posts

    • Are you vegan or vegetarian?   I am concerned about your lack of protein and fats in your diet.  These diets can work when you are also gluten free, but as a celiac you can be malnourished.  It is hard to heal when you are slowly starving yourself.   No offense, but some newly diagnosed celiacs end up with food disorders.  Perhaps working with a dietician can help.   What actually are your blood glucose levels?  Did you know that just as Hashimoto's is common with celiacs, so is type 1 diabetes?   Ask your doctor for antibodies testing for Type 1 diabetes (TD1), if your blood glucose levels are not in the normal  range.  You can develop TD1 (LADA) at anytime.   For adults there is a "honeymoon" period which can last for up to five years.  Be on the watch for other AI issues (besides TD1) too.   It is so important to monitor your health after a celiac disease diagnosis!  
    • He was not IGA deficient.  I'm still hoping we can convince the base GI to approve his referral.   Thanks for that thread about TTG Igg.  That's exactly what I was wondering. 
    • Star Anise Foods  rice paper and spring rolls are gluten free they have brown and white rice versions. I have not had issues with these in the past when I used to use them. Should be able to find them on amazon.
    • Hi strawberrymoon, If you are having a blood sugar problem, that can cause nerve damage and tingling.  Nerve damage is often associated with diabetes.  You can ask your doctor to check your A1C level to get an idea how it has been doing. It would probably help your glucose levels to stick with a paleo style diet, avoiding most carbs.  Carbs and meats have a different affect on blood glucose.  Carbs tend to spike blood glucose while meats even it out. There are a lot of negative changes that can happen with high blood glucose.  It is wise to try and get it under control ASAP.  My brother has lost most of his vision in one eye now from high blood glucose.  And he has the tingling symptoms you described.  The tingling can progress to pain in time.  My brother chose to ignore his diabetes and is paying the price for it.  He is doing better at it now but the damage is done. Yes, B-12 deficiency can cause those kind of nerve symptoms.  But if you have high blood sugar that is the more common cause.   Diabetes is not a rare condition.
    • I have been living in Ho Chi Minh City, Vietnam, for two years, and finding gluten-free food is proving more difficult than I thought, even if I am cooking my own food. Wheat flour, called "bot mi" in Vietnamese, seems to creep into a lot of stuff nowadays. What's more, manufacturers do not feel it is important to list bot mi in the ingredients on a food's packaging unless it is a principle ingredient in the food. In other words, soy sauces or wraps with just a tiny bit of wheat flour added to add a touch of thickness or pliability are not guaranteed to list the ingredient. For some genetic reason, Vietnamese people are not nearly as susceptible to food allergies as Westerners - it probably has something to do with exposure to less hygenic foodstuffs having built up an immunity over hundreds of years - so it is not really considered important to split hairs in that department over here. Anyway, I love rice paper but have often gotten glutened by it when I have it. Can any celiac who could tell if a product had gluten by more than just the ingredient list on the back let me know a definitively gluten-free rice paper brand? I know that very few rice paper brands actually list wheat flour in the ingredients, but I don't 100% trust the ingredients list for products made by Vietnamese companies. Call me paranoid. By the way, I have a neurological condition that irreversably breaks down my immune system when I ingest gluten, so I don't want to experiment with trial by fire here.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,695
    • Most Online
      3,093

    Newest Member
    ToniaC
    Joined