Latent Celiacs, What Advice Were You Given?

[AGH2010]

Hi everyone!

Was hoping to learn from what others have been told. My daughter tested positive on the ttg and EMA tests but her biopsies came back completely. Her doctor said she got to go down way too the bottom of her small intestines and too over 8 biopsies so she's fairly confident she would have caught some damage if it existed.

I've got her on the gluten-free diet nonetheless to see if it helps with her chronic constipation - and also because she's clearly making antibodies to gluten so why feed it to her unnecessarily.

I've been doing my own research and have seen the studies out there on latent celiacs but was interested in hearing what other people's doctors have suggested for kids with positive blood tests but negative biopsies.

Thanks in advance!

[StephanieL]

We were given the option to scope every year or go gluten-free and see if the ttg levels fell. We chose option #2 and have been gluten-free for 2 years now. After a few issues (thyroid stuff) DS finally is WNL for his bloodwork.

[dcns65]

My 17 year old daughter had positive blood work, negative biopsy and decided to go gluten free. The doctors gave her the choice of being tested again in a year while eating gluten or go gluten free. For us it was the strong family history, thyroid issues already starting and knowing another girl who suffered for months before she was diagnosed. My daughter also did not want to risk getting sick as she headed off to college next year. Even after 6 months of being pretty much gluten free her numbers were still not in the normal range.

[AGH2010]

So it sounds like it's typical for doctors to leave it up to us to decide whether or not to go gluten-free. I can't imagine the constant scoping and basically waiting for there to be damage.

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

[StephanieL]

  On 8/14/2012 at 12:51 AM, AGH2010 said:

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

Um...no, I don't think so. If she has elevated ttg's and + EMA, then those numbers won't fall to being within normal limits without being totally gluten free which does include cross contamination

[T.H.]

  On 8/14/2012 at 12:51 AM, AGH2010 said:

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

Obviously, I'm not a doctor. However, IMO, there doesn't seem to be enough research into this disease, testing, and gluten thresholds to warrant that automatic recommendation. It may be true, but it seems possible that it isn't. You'll probably have to make up your mind on that based on your and your daughter's experiences.

My son tests negative on the blood test, so he doesn't even HAVE celiac disease, but after my brother, myself, and his sister both came back positive, we had him on the gluten-free diet, too. He had problems clear up that had been bothering him for years.

Because he lives in a gluten free household and we're buying food for Celiacs, we always had gluten-free food that avoided cross-contamination. On a couple recent trips though, my husband allowed him to have 'just' gluten free food without worrying about cross-contamination. That's how we found out that it makes him sick. It's done it every time since then, too.

According to your doctor's theory, he shouldn't have a problem with cc, because he doesn't have Celiac Disease. Someone forgot to give my son's body the memo. We've had to make our own judgement about how much gluten our son can tolerate. We are still working on figuring out how much he needs to avoid, but cc is definitely an issue for him.

I don't know that we would have figured it out without having gone completely off gluten first, though.

[lil'chefy]

  On 8/14/2012 at 12:02 AM, StephanieL said:

We were given the option to scope every year or go gluten-free and see if the ttg levels fell. We chose option #2 and have been gluten-free for 2 years now. After a few issues (thyroid stuff) DS finally is WNL for his bloodwork.

What is WNL? What thyroid stuff?

[StephanieL]

  On 8/14/2012 at 4:21 PM, lil said:

What is WNL? What thyroid stuff?

WNL= within normal limits. Sorry, the medical professional escapes from me at times.

After 18 months of DS's ttg's remaining high and a few off TSH levels and the help of people here I demanded we see an endocrinologist. In March DS was put on synthroid. His ttg's at 24 months were finally normal. The thyroid issues (I believe) were causing his ttg's to remain elevated even though he was totally gluten-free and cross-contamination wasn't the issue.

[Mom-of-Two]

Hi there! I appear to have a "latent" celiac kiddo as well- I had my kids tested back in April after learning I myself have celiac disease, in January. Just wanted to get a baseline on them, they didn't have abdominal symptoms. My 8 year old came back with a ttg of 78.20 so he sent her for a scope, which was totally normal, also 8 biopsy samples, very good GI dr at a children's hospital, I feel the endoscopy and biopsies were done excellently. However, since her villi were "beautiful" as the GI dr said to us, he was not willing to diagnose her as celiac. He also didn't run any other tests on her, only tTG and the total IGA number. He told us she is likely in the latent form of the disease and may never develop symptoms- to feed her normally and re-test every 6 months or come back if she gets symptoms!

Went for a second opinion at the Cleveland Clinic where I am seen myself, this pediatric GI dr specializes in childhood celiac- guess what, he told me the same thing!! He tested her for the EMA and Vitamin D, CBC, iron. She was vitamin D deficient, and POSITIVE on the EMA. At that point, I had my answer, not to mention the genetics since I have celiac myself- they DID try for gene testing for her, but insurance denied it twice. Not paying out of pocket when I am proof of the genetics! He also got the biopsy results to have his pathology take a look, just to be certain nothing was missed- everything was normal, he said if there were any abnormal number of cells or anything, that he could use that to diagnose, but, not even increased lymphocytes.

So, we have decided to be gluten free and raise her with celiac, which is my suggestion to you as well! Why hang around and wait for your child to get damage, we are lucky that our kids don't have damage YET! Damage means vitamin deficiencies, maybe trouble digesting lactose, and eventually symptoms of celiac disease. For kids, growth issues as well, I just can't take that chance for my daughter. I am sure you feel the same.

I do wish I would have gotten a biopsy confirmed diagnosis on her, but what can you do? I wanted to deny it, after two good doctors told me to NOT put her on a gluten free diet. But I will not wait around for my very HEALTHY kid to get sick! And, I will NOT keep re-scoping the kid to check for damage! Good grief!

Good luck to you, sounds like our kids are quite similar!

[StephanieL]

Just to add too, our Cleveland Clinic Dr. called Dr. Fassano at the Maryland Celiac clinic and he was the one who said to either biopsy every year till there was damage or to go gluten-free and see if the ttg's came down and if so, that was our answer (being Celiac).