Daughter's Enterolab Results Are In. What Should I Do Now?

[emtek5]

Hi.

This is my first post, although I have frequented this website for the past two years since I was first diagnosed with celiac. I must say that the information I have obtained from this site has greatly helped me and made living with celiac much easier. I have three children, ages 12, 9, and 7. They have had the blood test done for celiac and all three tested negative. The problem now is with my 12 year old daughter. She has always had problems with constipation, sometimes severe. She has been on prozac for 2 years for anxiety, and has been diagnosed with mild ADD by a neuropsychologist. She has lichen sclerosis which is an autoimmune disease that, when active destroys the skin of the vulvar area if not treated. There is no cure. This is a chronic condition that has no known cause. She has had her blood tested for celiac twice by the pediatrician, the last about 8 months ago. Each time it was negative. The doctor said there was nothing to worry about. The bouts with constipation have become so frequent and severe that I decided to have her stool tested through Enterolab. Her Fecal Antigliadin IgA was 20. The normal range is < 10 units. They recommend a gluten free diet (which she has just started). I did not get all the tests available because my insurance doesn't cover it and I thought that knowing she is gluten sensitive is enough, since I have celiac, as do my sister and mother. So there is a strong family history. Now I am regretting not having the other tests like the ttg doneto know definitively if it's celiac. Either way she needs a gluten free diet. I am making myself crazy doubting myself when I should be relieved that I have an answer. It breaks my heart that she has to deal with this too at such a young age. She is so sad. Any advice? Thanks, Liz.

[FeedIndy]

My DD was also sad and disappointed when we started the diet-for about a week. Then she realized how great she felt! We didn't have any testing done at all-the diagnosis of our youngest coupled with the issues we realized could be symptoms were all we needed to give it a try. We are using dietary response by using 3 gluten challenges. We have done 2 so far and she just announced today that she didn't even want to try the 3rd! While sad about some of the things she will miss out on, she feels so much better that it's worth it. We have focused mostly one what she can have, reminding her of some favorite treats that are already gluten free and finding yummy substitutes for some that are not. I've also been rather indulgent about gluten free treats. I never used to let them eat chips, but now I keep several of their favorites around for snacks. I am also much more likely to give into a treat request, as long as it is gluten free, just to remind them that there are still good things we can have.

[jayhawkmom]

I'm sorry for what you are going through.

All 3 of my children are gluten intolerant. The oldest was the last to be tested as he was symptom free for many years. We didn't start noticing any problems until we'd started limiting how much gluten he was eating.

He actually had tested negative twice in the past, and this last time - not so much.

I think the key is putting a positive spin on it... obviously, how you do that will depend on your child. I found it much easier to do with my daughter. My son isn't as receptive to the positive spin, but I'm working on it.

It's got to be hard being a kid stuck with this. And, all we can do is try to make it as easy for them as possible, and try to make them feel as "normal" as we possibly can.

Lots of luck to you. The folks here have been such a help to me.... I don't know what I'd do without them!! Stick around... we can all help each other out.

[emtek5]

Thanks so much for the support. I did bring my daughter shopping to pick out snacks that she would enjoy.I have always limited chips and sweets in the past but I feel she needs to be pampered a bit right now. It helps that I've been gluten free for over two years now and we know alot about what goodies she can eat. The issue at her age is how she will handle socializing with friends and eating at their houses. Pizza and bagels are her favorite foods. It's definitely going to be harder for her than it was for me. But, we will take it one day at a time. I'm hoping she'll see a difference in how she feels and see that the diet is a good thing.

[rez]

Don't fret about not getting the other tests. None of his (Dr. Fine's) tests will specifically diagnose you with Celiac. Also, my son's tTG was not elevated from Enterolab, but his bloodwork was positive for Celiac. The tTG was elevated in the blood, not stool, which makes no sense to me. I would just try the diet and not spend any more money w/ Enterolab. You'll know if she starts doing better on the diet after a few days. Good luck!

[celiacgirls]

Both of my daughters are gluten and casein intolerant by Enterolab. I am also pretty indulgent when it comes to the junk food now as long as it is gluten/casein free so that we can focus on all of the things they can have. When they go to a friend's house, I send them food to eat. I have some individual pizzas already made and frozen that they can easily take. I also send chips, popcorn, etc. for snacks. Kinnickinnick makes bagels that my kids both like. I have found them at a health food store or you can order them.

If you decide you want further testing with Enterolab, I found out that they keep the sample around for at least 6 months so you can order the other tests later. I started with just the antibody test for gluten for all of us and then ended up doing the casein and the tTg and fat malabsorbtion tests.