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6 Month Check And Discouraged

Heather's Mom

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Heather's Mom Newbie
Heather's Mom
Posted

My daughter was diagnosed about 6 months ago (11 year old). We just had her 6 month check up. Her initial TTg level was 172 and now it is at 28. The doc says we need it to be below 20. He was happy with our progress but says we need to do better.

At the time I figured it was at 28 because she was getting hidden gluten somewhere or maybe because I had her blood draw done 10 days after returning from spring break vacation at Disney World. We live a very careful lifestyle with her. Our house is 98% gluten free (we keep 1 loaf of bread in the house and I have steel cut oats that I eat in the morning). I am very careful with her and she is too.

So my question is for those of you out there, how long did it take you to get that ttg level down? I'm wracking my brain trying to figure out where we are going wrong, but maybe we are on the right track and just need a little more time.

She will have another blood test in 6 months.

Thank you for any and all comments!

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Roda Rising Star
Roda
Posted

How was her gliadin antbodies? My tTg went from 78 to 6 after 6 months but the others were still elevated(never had a baseline of the AGA IgA/IgG). I had them all repeated after 1 year and the tTg was lower my IgA AGA was considered negative but my IgG AGA was still positive. IMHO I think that you have made good progress and would give it some more time, her number was high. I did look at possible cc because I have a shared house. I relooked at some things and identified some areas that still needed improvement. I started having symptoms starting in Jan. (go figure about a month after my 1 year 2 monrh check up) and have had lots of tests. Thats when I had the repeat celiac panel, some xrays, and finaly last month a repeat EGD. I found out I had espohogitis, a stomach ulcer, and the good news that my villi are no longer blunted. So I'm doing something right in that regard. I'm working on a cause for the other stuff now.

Heather's Mom Newbie
Heather's Mom
Posted
  • Author

The only number I have is the IgA which went from 172 to 28.

ravenwoodglass Mentor
ravenwoodglass
Posted

The only number I have is the IgA which went from 172 to 28.

IMHO your doctor should have congratulated you for how well your doing. That is a huge drop. She may have gotten a little gluten on your trip but I think that drop shows you are doing well. If she isn't having any symptoms I wouldn't worry about it.

Heather's Mom Newbie
Heather's Mom
Posted
  • Author

One of the things that really bothered me about the whole thing is that she is totally symptom free. Except for once when she got glutened at a Christmas gathering she has been doing exceptionally well. She gained 7 lbs and 1/2" over the 6 months. What freaked me out is that here she is symptom free but still testing positive for active Celiac. That scared me....we might think she is fine and here she is not.

I have re-evaluated all the food that we are eating. We do eat mainly fresh whole foods, but I do like to keep Amy's pizza in the freezer for Friday night. I have seen alot of negative feedback on Amy's pizza so I might eliminate that. We also do breakfast cereal. She mainly eats EnviroKidz, but I also have Kix and on the weekends sometimes get Trix or Pebbles as a treat.

I also have a more experienced celiac mom who is going to drop by my house on Saturday to review my kitchen with me.

New-To-This Rookie
New-To-This
Posted

I agree with ravenwoodglass, the doctor should be congratulating you on a wonderful job done on bringing that number down so low. And you're only 8 points away from where he wants you be below. I think you are doing a fantasic job! And having a more experinced celiac mom come into your kitchen is an excellent idea. She not only can tell you what you need to change but can reinforce what you are doing right already.

Also did you replace your toaster or do you use a separte toaster for her? I was cross contaminating my husband because he didn't think a new toaster was necessary, but after being hospialized the dietitian put it this way " A toaster doesn't cost that much and no matter how well you clean it you are still cross contaminating". I bought a new toaster while he was still in the hospital.

If she is symptom free, I wouldn't worry to much, and if she is having symptoms, try keeping a food diary so you can see what she's reacting to, if the foods are made in a factory that makes gluten foods you may be getting cross contaminated without realizing it.

Keep up the good work, 8 points isn't far to go!! :)

tunibell Rookie
tunibell
Posted

I think you and your daughter are doing a great job! I've been meticulously gluten-free for one year now, and my TTG IgA is steadily declining but still positive (28 at my last visit). All my other tests (IGG, DGP) were negative. I just think it takes more time in some folks.

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T.H. Community Regular
T.H.
Posted

Congratulations on getting the numbers down!

My daughter is 11 and celiac positive as well, and her 6 month check up will be coming up soon, so I feel for ya!

So, something my GI doc told me, plus a few hidden gluten things that might apply?

My GI doc said that if your daughter has any other food allergies or sensitivities, it can actually keep her TTg levels from getting to where they should, in his experience.

Allergies, at least, you can have tested. Food intolerances,on the other hand, most of them don't have a test except to see how she does when you take the food away. You may want to try a food log and see if anything is standing out - record her mood along with the foods.

My daughter? We found out that if she eats corn, the next day, she has trouble sleeping and trouble with emotional control. After research, discovered that if there are intolerances, it can interfere with the child's absorption of tryptophan, which means they can't make enough melatonin and seratonin the next day, so they have trouble with sleep and emotions. One of those oddball things that I would never have though to look for if not for my doc!

As for hidden gluten sources:

- if you kiss your daughter, or anyone else does, while wearing chapstick or lipstick and it gets on her mouth, it has gluten. or if she's messing around with makeup yet.

-tempera paint can have gluten, some glute pastes can have gluten, and other art supplies, too. If powder with gluten is in the air and she inhales, it could be glutening her at school.

-dry wall dust has gluten - has she been near construction during the day or night a lot?

- If her shampoo has gluten and it ever gets in her mouth, she's glutened. Or if she sucks on her hair and doesn't rinse it out enough, any hair product could gluten her. If she bites her nails or sucks on her fingers, any lotion or soap or sunblock that is on her hands might give her gluten.

- if she is really, really sensitive, even the laundry detergent on towels that dry her dishes could do it, or dishwasher soap that doesn't completely get rinsed off.

- any vitamins, toothpaste, mouthwash she's using that have gluten?

- many cleansers have gluten. So if, say, she helps with house cleaning and something is sprayed that she could inhale? That could get her glutened, too.

- if she is drinking from the water fountain at school, that can gluten her, too.

And that's all I can think of, LOL. Phew!

Good luck to you!!

My daughter was diagnosed about 6 months ago (11 year old). We just had her 6 month check up. Her initial TTg level was 172 and now it is at 28. The doc says we need it to be below 20. He was happy with our progress but says we need to do better.

At the time I figured it was at 28 because she was getting hidden gluten somewhere or maybe because I had her blood draw done 10 days after returning from spring break vacation at Disney World. We live a very careful lifestyle with her. Our house is 98% gluten free (we keep 1 loaf of bread in the house and I have steel cut oats that I eat in the morning). I am very careful with her and she is too.

So my question is for those of you out there, how long did it take you to get that ttg level down? I'm wracking my brain trying to figure out where we are going wrong, but maybe we are on the right track and just need a little more time.

She will have another blood test in 6 months.

Thank you for any and all comments!

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