Reaction To Cc In A "latent" Celiac

[Mom-of-Two]

First of all, I am not even sure that having "latent" celiac is a real thing, and neither is my pediatric GI, however it is the situation my almost 8 year old is in. She was positive on blood work, normal on biopsy- I also had the pathology re-done with a new pediatric GI to get a second opinion, was told her villi were fabulous and long and delicate, and beautiful, which is great except it did not give us a clear answer with regard to a diagnosis. He wants to re-test her TTG at the 6 months mark from first testing, which will be end of October- but, hubby and I are just having her be gluten free. It is just too risky to hang around and wait for her to have symptoms, or damage. If we caught it when it just began, that is a good thing I believe.

What I am struggling with, is having a healthy kid who did not have GI symptoms go gluten free, and my living in constant stress and fear as a parent that she will get sick from eating something contaminated. In a child that does not have current GI symptoms in response to gluten, and does not have intestinal damage, will her reaction be the same? I know we won't know until it happens, but I just want to understand. My own GI dr said that many people tolerate eating out and normal day to day without reactions from CC, others can react to a single crumb if it gets in their food. I am not real sure where I fall, I have been gluten free 5 months and not had any awful GI reactions, but do experience fatigue, achy joints and bloating/gas on occasion which could be related- I only eat out extremely rarely, and have only been to Outback and PF Changs (one time each) and ordered diligantly and had great service all around.

I hate the feeling that I am taking my child who is happy and healthy, and putting her on a diet which may make her sick in the long run, just from daily life. I of course will be as strict with her as I am my own eating (we are a gluten-free home now) but it is still hard. I am struggling a bit with it emotionally which I assume is normal as a parent. To have celiac myself is one thing, but to feel like I have to protect my child even MORE now is hard!

I am doing the gluten free diet against the advice of a very good pediatric GI who knows a great deal about celiac, and STILL doesn't want me to take her off gluten until we re-test. His theory is that this is not a rush, as she does have internal damage, and she is very healthy with no vitamin deficiencies or weight loss, no GI symptoms. Her joint pain is unexplained, she was tested for JRA 18 months ago with normal labs. So with that in mind, I am hoping the diet may take away that symptom and give us more answers, as well as seeing the TTG come down at next testing gluten free.

I think I just need to stop reading topics of children who vomit from CC with gluten- it worries me to no end. This is a kid who has literally vomited like 2 times in her entire 8 years of life! Just so healthy!

[icm]

I think that a genetic test will be necessary for your daughter. Ask for celiac HLA-DQ testing. I personally recommend Quest but myceliacid has a self-test you can run at home.

If her gene test is positive for celiac, since the blood test was positive, I would put her gluten free immediately.

[dcns65]

We struggled at first with the decision for our 16 year old daughter. Totally latent with no symptoms other than low iron and vitamin D and the beginning of hypothyroidism and a relatively low TTG (75 which has dropped to 46 six months later) She's an excellent student and dances ballet, tap and modern 6 days a week. She was devastated by the news that her blood work was positive and was frustrated that her biopsy was negative. Two GI doctors gave us the same choice, retest in 6 months to see what her blood work shows or begin a gluten free diet. We left it up to her but she decided to go gluten free. The week before her 6 month re check, I bought chicken nuggets with gluten by mistake. She also ate a graham cracker at a party by accident. She had no reaction so now I too worry, how will she know if she is getting gluten through CC. She's been away dancing for 4 weeks eating out and at a cafeteria. She tries hard but I know it's difficult to avoid the gluten. She has met other dancers who are gluten free and for the most part has supportive friends.

For us it's been almost a year since my son was diagnosed. We do miss some food options but my children and husband are healthier than they were a year ago. Hang in there.

[Mom-of-Two]

Anyone else?

The genetic test was declined by insurance but the doc wants her to get it, he pushed for an appeal and is trying to get it covered. I am also having her ttg retested and checking endomysial antibody, the first GI did not test that, just a good thing to know.

She is gluten free at home with the rest of us, but haven't taken it out completely yet.

[StephanieL]

When we had the same thing (high ttg, no visible damage on biopsy) our Dr called Dr. Fassano. Our options were to go gluten-free and see what his ttg did (started at 120+) OR rescope yearly.

That was not going to happen. After a few months we decided for e gluten-free diet for him. After issues with thyroid and cc issue with a product (he was completely asymptomatic as well) he finally after 2 years has normal ttg's. We did the genetics after the scoop and they were + so it was another push to go gluten-free and see what happened.

[Takala]

I hate the feeling that I am taking my child who is happy and healthy, and putting her on a diet which may make her sick in the long run, just from daily life.

A properly balanced gluten free diet will not make her sick. It also will not make a normal person sick. Going on a gluten free diet, if she then starts to get sick if she ingests gluten, proves that she has a problem with it.

If she's not "happy" with it, then you need to work on your attitude, which she will pick up from you.

[Mom-of-Two]

I was not saying that a gluten free diet was not healthy, or would make her sick- I was referring to her getting accidental gluten and having GI symptoms she does not currently have. My only point is that I don't want to comitt her to a lifetime of a strict diet, until we are 100% certain that is the case- our pediatric GI says that she could have another issue causing the high TTG, which is WHY we are doing the other tests. If everything points to celiac, we will happily keep her gluten free, we are already gluten free in the house.

And I have a great attitude about eating gluten free, as does she- she has not expressed any unhappiness about the issue, and understands it with a great deal of maturity.

Stephanie- Yes- that is one reason our GI is pushing for the gene test, just to give us another marker to go on, I also want that EMA test just to give us that clarity as well.

Her TTG was 78.20 when tested 3 months ago, I think I am going to have her retested when he runs the EMA, to see if it has remained the same or gone up/down. I suppose that is a moderate TTG, not super high- but, my TTG level was only 84 and I had somewhat severe damage on biopsy.