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Any Gluten Home Test Kit Recommendation?

GF-Cheetah Cub

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GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted

Hello,

 

My 11-year-old is a slient celiac.   She suffers no symptoms from gluten.

 

We have been on a strict Gluten Free diet for about 9 months, and our last lab test still showed a high TTG number.   It was above 100.

 

We wanted to test a few food items that she likes to eat for gluten.   We think they are gluten free, but they aren't labeled as gluten-free.   We also want to test some of her favorite restaurant dishes that are supposed to be gluten free.   

 

I googled and found a few gluten test kits.  They all promise the same thing, and I am a bit confused. Anyone have tried any test kits that you can recommend?

 

Thanks!

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beth01 Enthusiast
beth01
Posted

What was her labs before gluten free? If her antibody levels were greater than 100 before gluten free, there is no way to tell how much over 100 it could have been, it could have been 10,000. The levels take time to go down. Not everybody's bodies heal at the same rate either.

BlessedMommy Rising Star
BlessedMommy
Posted

I'm confused, Beth, are you saying that if a number is higher than 100, they don't give a specific number? Because on a blog, I saw a post about a mom whose kid had a Ttg of 3,500 at diagnosis.

kareng Grand Master
kareng
Posted

I have never seen a 3500. Not on a normal real Celiac test. Some of them stop counting over 100 or 200? I think.

BlessedMommy Rising Star
BlessedMommy
Posted

Here's the post I read:

 

Open Original Shared Link

GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted
  • Author

Our lab results do not show any number above 100, so we just don't know how high her TTG was at the initial diagnose.   We have had two lab tests since then, the one at August was also over 100, then our recent Nov test again showed over 100.  

 

We have been super careful, I really thought that our Nov ttg would come down, so I thought to test some of my daughter's favorite foods, in case there are gluten in them.

 

So, ttg numbers can be high into the thousands?!   I had no idea...

BlessedMommy Rising Star
BlessedMommy
Posted

Maybe it would be best to forgo restaurants for awhile while trying to figure things out.

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GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted
  • Author

We did that too.   We did not eat out once for 30 days prior to our Nov test, and we still tested over 100 ttg.

 

My 11 year-old is a picky eater.   She only likes so many things.   We are comfortable with the food labeled gluten-free such as Glutino, Udi's etc.   We want to test the foods that do not have gluten on the ingredients lists, but are not labeled gluten-free.

 

No one used any test kits on this board?   Are they known to be not reliable?

StephanieL Enthusiast
StephanieL
Posted

Here's the post I read:

 

Open Original Shared Link

 

I have NEVER seen results like that. I think it is more likely that was an error.  We've had these tested run at several labs and many stop at 100 and some at 200 but I haven't ever seen over 300 in all my time in Celiac land!  

 

OP- We did the same thing.  With levels over 100 and only being 9 months gluten-free (and 11 and with no signs and symptoms where she *could* be cheating when away from home) I am not sure I would jump to testing right away.  After 2 years though we went through and tested things I wasn't able to 100% determine were gluten-free.  We did not eat out at all so that wasn't an issue (and honestly unless you eat out a lot I wouldn't worry about that being the primary reason).  They are VERY expensive and they are not quick (20-30 minuted per item you test with a lot of steps). These are the ones we used:  Open Original Shared Link

SMRI Collaborator
SMRI
Posted

Here's the post I read:

 

Open Original Shared Link

 

I think there was a miscommunication somewhere with that report....

 

OP, it's possible her levels are coming down but you won't know until she is under 100 I guess.  I'd skip the restaurants too, and a month of not eating out isn't long enough really.  I have an app on my phone, Shopwell, that is pretty good at tagging foods with gluten, not so good at tagging foods that do not have gluten though.  Is the entire family gluten-free?  How careful are you if they are not?  Maybe stick to known gluten-free foods for her, meat, vegetables, and foods that are labeled gluten-free, for about 6 months or so until her next round of blood work.  It does take time for numbers to come down and if she was closer to 200 and she's now at 105, that is a serious improvement, but you don't really know her numbers.

GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted
  • Author

Thanks everybody.   Yes, my entire family is gluten free now.   All home cooked meals are gluten free.

 

Maybe I do need to be more patient then.   We have another lab test scheduled for Feb.

 

Stephanie, thank you for your recommendation.  Did you find the test kit reliable?   My biggest fear with such tests is actually false positive.   My daughter already had to give up a lot of her food.   If this test falsely test gluten-free items to contain gluten, then she will have even less food to eat!

StephanieL Enthusiast
StephanieL
Posted

I have no way to say yes or no but I do believe these are the strips many manufacturers use.  

 

I can't answer definitively though because my DS is still having issues but we did find several products that tested + that we removed from him diet at that point.  Sorry I can't be more specific. 

beth01 Enthusiast
beth01
Posted

I'm confused, Beth, are you saying that if a number is higher than 100, they don't give a specific number? Because on a blog, I saw a post about a mom whose kid had a Ttg of 3,500 at diagnosis.

Most labs only test up to 100. They usually ( can't say in this instance) have a cut off for things like this because once you get so high, the numbers beyond don't mean anything, and the higher you try to test, the less accurate the final result will be. This is why it's good to draw the whole panel so they can compare all the results since some of those others will drop faster than the tTg IgA. My daughter has her appointment in a week or so, I will find out about hers then too, but she had the EMA drawn also.

StephanieL Enthusiast
StephanieL
Posted

Most labs only test up to 100. They usually ( can't say in this instance) have a cut off for things like this because once you get so high, the numbers beyond don't mean anything,

 

They may not mean anything in the "you have it worse" department but testing for specific numbers does help them see the trend in the numbers to be sure they are falling (specifically with the tTG) and that is usually the one most Dr's now do to monitor compliance (though again, debatable).

bartfull Rising Star
bartfull
Posted

Also, if you haven't already, go to the coping section and read the Newbie 101 thread. It doesn't matter how careful you are about reading labels if you are still toasting her Udi's in the old toaster. Or if you stir her gluten-free pasta with an old wooden spoon, or cook her gluten-free foods in a cast iron pan that once held gluten. Cross contamination, if exposed to it on a regular basis would be enough to keep her numbers high.

GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted
  • Author

Hi there, we did clean out the kitchen, and got rid of lots of old kitchen tools and some appliances.   We bought new toaster oven, and even got rid of our much loved Belgium waffle maker (we bought a new waffle maker too).  

 

I just don't know what else we might be doing wrong.   It is frastrating, that's why we want the test kit.   I am going to buy the ez gluten test kit.   If I have any interesting test results, I will report back.

StephanieL Enthusiast
StephanieL
Posted

Again, it's only been 9 months.  I wouldn't drive yourself crazy just yet.  

 

I know as a parent you want to make it right ( we are at 5 years gluten-free and still not "normal" with labs) but you have to remember the damage took 10 years to happen and while it shouldn't take 10 years to get better it may just take more time.  Hugs!

  • 2 weeks later...
GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted
  • Author

Hi guys,

 

Our Ez gluten test kit finally arrived.   I just did two trial tests to see if we can trust this product.

 

I tested our gluten-free Tamari soy sauce, and it tested negative for gluten.   Yeah, our gluten free soy sauce is gluten free!

 

I tested a regular wheat bread, and it tested high positive for gluten.

 

 It does take about 20 minutes for each test, but the steps are very easy (mostly wait time).   I would not bring this test kit to restaurants to do the experiments, but will bring some of my child's favorite food home to do these tests.

 

We are happy with this product.

 

Thanks!

LauraTX Rising Star
LauraTX
Posted

Awesome!

StephanieL Enthusiast
StephanieL
Posted

Yeah!

Yes, I laughed when I saw "use in restaurants to test your food" because by the time you tested a) your food would be ice cold and B) what if it is positive?  Are you going to send it back and start all over?  lol

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