How Long Until Ttg Down, When Gluten-Light?

[Mom-of-Two]

In the never ending saga of my 8 year old's celiac process, they said I can have her re-tested for her tTG, and also test EMA because it was not on her first test, which was three months ago (the first GI only ran tTG). So I will be having tTG, EMA, Vitamin D, full CBC w/diff done I believe, per the new pediatric GI to see if her tTG levels have done anything.

He is doing this because her elevated tTG is all we have to go on, in addition to ME having celiac of course! Because her biopsy was normal, he just wants to be really thourough in testing to be sure which route to take. ALSO, his pathology DID review her biopsy slides, and also concur her villi are beautiful and long/delicate, NO increase in white cells at all either.

QUESTION is.....we have been a gluten free household about 2-3 weeks now, just for my sake (hubby was already gluten-free at home with me). Been WAY easier to prep and cook in my kitchen without worry of CC issues. Kids have done great with gluten-free pastas, etc as well! I have been letting my daughter eat gluten in small amounts when out, but it isn't a ton, and sometimes not even every day. She for example had a chicken sandwich yesterday, and a cookie at the grocery store bakery. No gluten items today, however. How long does it take for tTG levels to go down, if I have been limiting her gluten at home but she is having it a few times a week? I have nothing gluten left in the house to gluten her up! I was planning to take her to the lab tomorrow, but if there is a concern the light gluten eating has impacted her levels in 2-3 weeks, maybe I should wait?

[icm]

If you want the follow up testing to show that celiac disease is present, she will need to eat at least four (4) slices of wheat bread per day for at least six (6) weeks.

If you decide that this is too much, then I would suggest hla-DQ celiac gene testing.

If the EMA blood test comes back positive, it is extremely unlikely that she doesn't have celiac disease.

Also do remember that the gluten free diet is an "all or nothing" thing! Going gluten-light may ease symptoms and slow down the inflammation thus rendering a falsely negative result but damage is almost certainly still occurring.

Ask about the DGP deamidated gliadin peptide blood test. This test is more specific and sensitive than both the EMA and tTG blood tests. In fact, I would ask for this over the EMA as it is more reliable. Australia and New Zealand doctors normally screen for just the tTG and DGP antibodies and don't bother with the older less sensitive EMA test. The USA seems a bit behind the ball... Again (sigh)

[Mom-of-Two]

The gene test was denied by our insurance, but the GI appealed and is pushing to get it done, just for the knowledge.

I clearly realize there is no gluten light with celiac, as I do it myself every day and have been dilligantly gluten free over 5 months since my own endoscopy. Our home is gluten free as well.

The reason we are holding off the FULL removal of gluten foods, is her biopsy was totally normal, reviewed by two different hospital pathology- this new GI reviewed as well, while I know the damage can be patchy in children, he took 9 samples, and she also had no increase in white cells. I was giving the pediatric GI the benefit of the doubt, because she is healthy with absolutely no vitamin issues or slowed growth, and no GI symptoms. We have to go on 1) her high tTG and 2) the genetics since I have it. He highly suggested waiting this re-test, so we did.

If she comes pos on the EMA, she will be diagnosed with celiac and totally gluten free, of course. In time for the school year, so I can make the necessary adjustments.

[nvsmom]

It's hard dealing with our kids' possible illnesses. hugs

If you really want the tests, I would delay a couple of weeks and gluten up in that time. I was eating fairly gluten-lite and then switched to lots of cinnamon buns (mmmm) for about 3 weeks before my test and it was very positive.

Did the doctors have an alternative explanation for her high ttg test? If not, then I think the extra tests are a sort of make work project for the doctors since ttg IgA is about 95% specific to celiac. To me it looks like the blood test shows she has celiac but the doctors couldn't find any affected samples in the biopsy; that's the simplest explanation... unfortunately.

Regardless of the test results, I would make her gluten free. She probably has it, or at the very least some sort of sensitivity. there is nothing in those restricted grains that is important to her health. Nothing. It's just a case of everyone else having it so we want it too.

I am testing my 3 kids today for it and regardless of the outcome, they are going gluten-free so I can prevent possible problems if they have false negatives. If they want to eat gluten when they grow up, that's fine, but I'm switching them gluten-free in August. I'm just really scared about hurting them with food....

Also, I had celiac as a kid but it was undiagnosed. I was a REALLY tall kid. Huge. We're talking 100th percentile for height. I was the tallest kid in my whole school in grade 6... when I suddenly stopped growing completely at age 12. I'm just lucky I grew early. I didn't have deficiencies back then either but eventually I had strep a half dozen times a year, snapped joints and ended up with another autoimmune disease. I wouldn't risk the gluten if there's a chance she has it.

[1974girl]

I am in the minority I know but I do not trust the reliablity of Ttg solely. I know I have told this story a zillion times but I will tell it again. My celiac daughter had a ttg of 164 and 2 weeks later at another doctor and a different lab without a diet change, she had 8. Yes, the range was different but the 164 was supposed to be under 15 (very positive) and the 7 was supposed to be under 5 (weak positive) That's a big difference! The doctor couldn't explain it. She actually questioned if they had gotten the blood mixed up with someone else but her thyroid test was on there also proving it really was hers.

My 2nd daughter is just like yours. She was weak positive on the chart but very close to being positive. She was a 9 (weak pos) and positive was a 10. She actually had a higher ttg on that test (9) than the actual celiac daughter with damage (7). In fact, the nurse called me to tell me both kids had celiac on the same day the week before Christmas. Merry Christmas to me. But at the follow up, the doctor said her EMA was negative so he was saying she did not have it. Retest in 6 months. We do gluten for her when we were out. She ate cookies at the grocery store, too. We did a lot of breakfast gluten but every dinner was gluten-free. She just had her 6 month recheck and was a 4. Negative was anything under 17!!! So they called and told me she does not have it. It kills me that I almost went gluten-free for life for her when she doesn't have it. I have heard that the EMA is very reliable. But I am not certain about that Ttg for myself. Even here, you will hear of negative results and showing celiac or positive like your dd and not showing it. I do not for the life of me understand why people keep saying it is almost fail proof. We have not had that experience with Ttg.

[justlisa]

1974... We all make the choices that are best for us and our children...as should be...

I happen to disagree with you....but, that's okay, too.

I'd really like to ask you something, though... You don't have faith in the positive result, but you do in the negative? Just curious...

Also, after all the personal stories you've read, on here...TONS...that relate how long it took for many to get dx... Well, I am just so curious why you so easily could accept the latest results?

I'm really not criticizing you...I genuinely want to know...

Also, I happen to think the 1 in 12 statistic (hereditary) is a bunch of bunk... I believe that statistic is terribly skewed...

[1974girl]

It's ok if we disagree! I am fine with answering. And I might be wrong! Who knows. But my girls have no symptoms. I think it is easier to believe negative results when they can eat a loaf is bread just fine. I may think differently if my kid was sick. I am sure I'd doubt the results. I am not willing to call her celiac with negative tests and no symptoms. If that was the case then everyone would be considered celiac. This child has been tested for celiac 3 times in 18 months Two were negative. (middle one was positive). Just because her sister has it doesn't make me want to keep her gluten free. My oldest has 3 autoimmune problems so I do believe her celiac diagnosis plus it was biopsy confirmed. But about me questioning the test... Even the GI said you don't go from 164 to 7 with no diet change in 2 weeks. I believe the lab messed up. This may make no sense to you but that's my thought process.

[1974girl]

I should clarify that my oldest has no GI symptoms. Who knows if the celiac caused the others autoimmune. Dh is type 1 so we just have bad genes. Celiac child has 2 genes for celiac. Uggg! I am hoping the fact I breastfed number 2 will help. If I had known I would have done it with number 1 but I was stupid and fed her soy formula for a year!

[justlisa]

1974...

I appreciate your answer! It really helps to understand your reasoning...

Even when folks don't understand or agree, it helps so much to communicate...

[1974girl]

Thanks for being so nice even when you think I'm nuts. Now I have a question to try and understand those who don't believe negative but always believe positive. Is it just on celiac tests? If you were tested for Lyme disease and it was negative would you believe it? I have a friend with Lyme who swears negative tests mean nothing and thinks everyone has it. If you had a sibling with diabetes and you tested negative at 2 out of 3 different labs , would you still go sugar free for the rest of your life? Or is it just celiac tests? Is it just a major distrust of doctors and tests in general?

[justlisa]

I don't think you're nuts...and it's not difficult to be nice to someone who is nice, too.

As for your question... I don't take all negative test results at face value... In fact, I harassed my doctor for ongoing, repeat Lyme testing early on (when they couldn't 'find the answer' to my many symptoms)... I, finally, ruled it out because it didn't fit with all that was happening to me... Lyme, also, has a high incidence of "false negatives ".

As for diabetes... No, I wouldn't go sugar-free for the rest of my life. First, because the genetic inheritance of diabetes is not nearly as marked as celiac/NCGI. I don't believe the 1 in 12 statistic...I've seen far too many folks with immediate family members who are, also, affected. Combine this with the extremely high rate of false negatives, people who are asymptotic or unable to make the "connection", and the fact that people, quite often, go years...decades...of damage to their bodies without a dx or figure it out for themselves...well, it's hard, for me, to see it in the same light.

And, ultimately, I just don't view it as a "punishment " to go gluten free... I really don't... I would, personally, prefer to err on the side of caution when it comes to my son... You see, I wholeheartedly believe I've had this all my life...

To round it all off... I don't believe gluten is good for anybody...

[nvsmom]

I don't think you're nuts.

It's that stat of almost 1/3 celiacs have a negative ttg test that would make me more likely to believe the positive than the negative tests. There are so many who get a false negative and, from what I understand, it is virtually impossible to get a false positive... Kind of like with a pregnancy test; you can't be a little bit pregnant. It's all or nothing.

Also, I believe (just my opinion) going gluten-free is a safer risk than conituing with the gluten if there is any doubt. Eating normal is easier but I worry that what if my boys have it, in spite of a possible negative test result, and I feed them the wrong foods when I don't need to (except to make it easier for us and because we like the taste), and then I end up damaging them for life. I don't think I could forgive myself.

I'm waiting on my kids' celiac test results, but I'm making them gluten-free by the fall regardless because:

1. 
   
   
2. It's easier on me to prepare meals. Selfish but true.
   
3. Eating less wheat is healthier as long as you don't replace it with baked gluten-free goods (I won't).
   
4. Kids' celiac tests are notoriously unreliable, more so than adults.
   

If diabetic tests could be wrong 30% of the time, it ran in our family, and I had reason to suspect my children had it, I would make them sugar free to be safe... they would hate me but I'd do it.

If my boys test negative for celiac but they want to try gluten when they are adults, or close to it, I'll be fine with that but I'm hoping they'll have the sense to test for celiac after 6 month and a year to be safe. I have a few years to brainwash/train them for that. LOL

[NoDayButToday]

Just a note on Lyme disease tests...they are VERY OFTEN false negative - especially the ELISA (the basic Lyme titer they do initially).

The only way to ensure an accurate Lyme test is to test through IgeneX in CA.

I was negative twice on the basic test, and finally tested CDC positive through IGENEX.

These types of antibody tests (like Celiac, as I understand), can easily be negative depending on the body's immune reaction, the test sensitivity, etc.

[1974girl]

Thanks. I do see your points too. I really do Oh about Lyme. That I'd why I mentioned that one. My friend was told she had MS only to discover it was really Lyme. gluten-free helps that too so she is also gluten free. But she was tested twice and told told no also. But she told me another lab found it. I wonder if it was the same one! Anyway they will still say there is not Lyme disease in Tennessee yet there is a big support group for it. Go figure! She is a big activist for it now. Back to my dd. If blood is never wrong they would not scope! There has to be false positives because sometimes they find nothing. There is a while thread on the kids board now about regretting NOT getting the scope and going on all blood.My dd had the vitamin test and isn't deficient in anything. She has negative blood now. If she has any symptoms or is ever positive on the TTg again or ever gets the EMA I will immediately go gluten free with her. I just need some sign of it. But I do want to end and tell you guys on the other side that you are awesome parents to be conscious of this. After listening to my GI tell me about how lazy some parents are about it .... Any of use who do it awesomely whether our kids is celiac or not deserves a pat on the back. Glad to be part of this group!

[1974girl]

Sorry for the typos. On my phone and apparent have crazy thumbs and auto correct is killing me.

[justlisa]

1974, The great thing is.. whatever happens...your eyes are "open" now...you'll be watching... I agree about some parents...my SIL is one of them. My nephew was dx as T1DM (type 1 diabetes) about 10 years ago...it's been a DISASTER. She is just one of those people who has to have "easy"... Sadly, she's raised him to, pretty much, "eat what he wants" and compensate with insulin. When the dietician told her "it's not like the old days...diabetics don't have to avoid EVERYTHING", she ran with it. The poor kid (he's now 22) has terrible eating habits and lots of problems. I don't think he's ever been stable. nd, of course my SIL is a "lecturer"...she's totally clueless... She won't listen to ANY other points of view. It's very sad.

[1974girl]

That's horrible. Since I live with a type 1 I can't imagine. My dh and I were both tested for celiac after my dd diagnosis. We were negative. Now y'all have me freaked out that 1/3 are wrong. I was wondering in the shower if my test was wrong!

[Mom-of-Two]

Follow up:

Low on vitamin D- level of 27

Iron normal

CBC- high % lymphocytes??

ttg: 44 (<20) her level 3 months ago at initial test was 78.20 so my guess is not eating gluten at home for a couple weeks took her down??

Endomysial: :Confusing. My result was pos or negative, didn't expect to see a value there but her result was 1:40 and it states more than 1:10 dilution is positive. So I guess she is positive but not drastic on that scale, again maybe much lower since being lighter on gluten?

[Mom-of-Two]

Just moving this up on the list, in hopes others would see my update in prior post