My Son's Enterolab Results Are Here

[brigala]

These are his results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA: 28 Units

Fecal Anti-tissue Transglutaminase IgA: 26 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 10 Units

HLA-DQB1 Molecular analysis, Allele 1: 0303

HLA-DQB1 Molecular analysis, Allele 2: 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 9,5)

He has 2 copies of the gluten-sensitivity gene, and a clear positive to gluten (even though our household is almost entirely gluten-free and he gave up gluten on his own several weeks before the test). He doesn't have the Celiac-specific gene but I don't think that matters much. He's OK with going without gluten because he's already figured out on his own that it makes him feel like crap. But he was really upset about the dairy results. Positive is anything 10 or greater. Enterolab recommends that results only be considered positive or negative, not "barely positive" and a strict CF diet be followed with a positive.

My son's really upset about losing cheese and ice cream. He can live without milk, barely, because he's OK with almond or rice milk. He is 14 so I told him I wouldn't enforce a strict CF diet -- it's his choice. But from his reaction I think he knows in his heart that he's going to have to do this. What can I do to help him?

If he chooses to follow a strict CF diet, I will probably move toward a CF household, but that's going to be tough on me. My other son (not yet tested for anything) already avoids most dairy, and my husband doesn't do a lot of dairy either, so I'm the one who (besides my son) is going to be the most inconvenienced.

-Elizabeth

[ang1e0251]

For ice cream there are soy (which I eat) and I've heard great things about the ice cream made from coconut milk. Cheese is tougher. Can he have goat cheese?

[brigala]

The Enterolab suggestions say goat's milk is out, too. It has less casein in it than cow's milk, but that's not the same as no casein. I think it would be like a Celiac eating Spelt... not as bad as wheat, maybe, but still bad. So far my son doesn't think he has a problem with ANY milk. Or, at least, he doesn't want to admit he has a problem with it.

I don't know what to think. 10 is positive, and Enterolab says a positive is a positive, and compares it to a pregnancy test -- a slight positive doesn't mean you're only slightly pregnant. But... wow, it doesn't get any closer to the cut-off than that... 9 would be negative! Is it really worth the trouble to eliminate dairy when the positive is so close to the cut-off?

And even if I decided he should eliminate dairy, he's old enough that I can't enforce it if he's not on board. I think we'll have to really go over the results. He does feel better off gluten, but he still is having some chronic fatigue issues. If eliminating dairy made him feel even better... it would be worth it.

-Elizabeth

[Quasior]

This is close to me and my children it's not funny.

OK, well, we went dairy free but we were tolerating sheeps fetta and occasional goats cheese. After periods of non-dairy I slowly introduced small amounts of cheese or yogurt or ice cream, but no milk. When the symptoms returned it was taken out again. Oddly enough though, we began to tolerate small amounts here and there, my son has recovered much faster than I have! We may never be completely back on it (I know I won't) but occasionally seems OK. It is said some ceoliacs can eventually reintroduce dairy eventually, but whose to say one can't learn to enjoy the alternatives more !!

We find sheeps cheese (though harder to find) has zero problems for us, and doesn't have the sharpness particular to goats cheeses. Buy an ice cream maker and make your own from what milks you can tolerate, there are cream like subs that work. I can understand not liking soy cheeses but oddly enough there might be some you can find which will be agreeable. Its just a matter of trying a lot of different products til you hit the sweet spot. I hope that helps!

[brigala]

Thank you. My mom actually suggested the ice cream maker when we were talking last night. I think that's a good idea. It's got to be better than buying Coconut Bliss ice cream for $6/pint (not that I wouldn't do it occasionally for him).

I suggested he just cut back and not worry about cutting it out until we figure out what we're doing. It took me probably 6 months to learn how to do gluten-free properly; we're not going to identify and eliminate dairy overnight. But he's already finding that his digestion feels better and he's squinting at labels to try to see anything that might be dairy-related. Thank goodness some of our favorite gluten-free foods are also marked CF anyway!! We had a gluten-free pizza the other night and he could tell the cheese didn't settle well with him and he wouldn't eat a Mrs. Leeper's boxed meal his brother made for lunch today even though he fixed it with rice milk -- because the mix itself has some dairy in it.

I think I took the right approach basically handing him responsibility for his own health and not forcing the CF diet on him.

I'm going to try making a gluten-free/CF biscuit tonight that I saw on the cooking/baking board.

My poor mom... she is already trying to figure out how to add dairy-free to her already gluten-free soy-free and corn-free Christmas dinner plans...

-Elizabeth

[purple]

Thank you. My mom actually suggested the ice cream maker when we were talking last night. I think that's a good idea. It's got to be better than buying Coconut Bliss ice cream for $6/pint (not that I wouldn't do it occasionally for him).

I suggested he just cut back and not worry about cutting it out until we figure out what we're doing. It took me probably 6 months to learn how to do gluten-free properly; we're not going to identify and eliminate dairy overnight. But he's already finding that his digestion feels better and he's squinting at labels to try to see anything that might be dairy-related. Thank goodness some of our favorite gluten-free foods are also marked CF anyway!! We had a gluten-free pizza the other night and he could tell the cheese didn't settle well with him and he wouldn't eat a Mrs. Leeper's boxed meal his brother made for lunch today even though he fixed it with rice milk -- because the mix itself has some dairy in it.

I think I took the right approach basically handing him responsibility for his own health and not forcing the CF diet on him.

I'm going to try making a gluten-free/CF biscuit tonight that I saw on the cooking/baking board.

My poor mom... she is already trying to figure out how to add dairy-free to her already gluten-free soy-free and corn-free Christmas dinner plans...

-Elizabeth

You might find some good recipes on Open Original Shared Link

Karina has lots of allergy friendly recipes, subs and tips!

[2boysmama]

Thank you. My mom actually suggested the ice cream maker when we were talking last night. I think that's a good idea. It's got to be better than buying Coconut Bliss ice cream for $6/pint (not that I wouldn't do it occasionally for him).

I suggested he just cut back and not worry about cutting it out until we figure out what we're doing. It took me probably 6 months to learn how to do gluten-free properly; we're not going to identify and eliminate dairy overnight. But he's already finding that his digestion feels better and he's squinting at labels to try to see anything that might be dairy-related. Thank goodness some of our favorite gluten-free foods are also marked CF anyway!! We had a gluten-free pizza the other night and he could tell the cheese didn't settle well with him and he wouldn't eat a Mrs. Leeper's boxed meal his brother made for lunch today even though he fixed it with rice milk -- because the mix itself has some dairy in it.

I think I took the right approach basically handing him responsibility for his own health and not forcing the CF diet on him.

I'm going to try making a gluten-free/CF biscuit tonight that I saw on the cooking/baking board.

My poor mom... she is already trying to figure out how to add dairy-free to her already gluten-free soy-free and corn-free Christmas dinner plans...

-Elizabeth

Her best bet is to try to keep it simple with whole foods - meats, veggies, and fruits. When you try to incorporate too many of your "old" foods, it gets entirely too frustrating, I've found.

[missy'smom]

There are many yummy sorbets that are CF-various brands and flavors if ice creams are what he misses. If you can make a chocolate pudding that's CF, you can try freezing it to make fudgesicles. We freeze 100% fruit juices in dollar store molds to make posicles in a variety of flavors. You can try some concoctions with coconut milk too.

[Ecezma or Celiac Mom?]

Have you tried goat's milk? Itc's pretty good and my 4 year old has taken to it so easy. I find the 1 and 2% variety the best. There are delicious cheeses and ice creams also!!! My daughter won't touch rice or soy milks! Sheeps cheese is delicious also but very expensive!

Good Luck!

These are his results:

He has 2 copies of the gluten-sensitivity gene, and a clear positive to gluten (even though our household is almost entirely gluten-free and he gave up gluten on his own several weeks before the test). He doesn't have the Celiac-specific gene but I don't think that matters much. He's OK with going without gluten because he's already figured out on his own that it makes him feel like crap. But he was really upset about the dairy results. Positive is anything 10 or greater. Enterolab recommends that results only be considered positive or negative, not "barely positive" and a strict CF diet be followed with a positive.

My son's really upset about losing cheese and ice cream. He can live without milk, barely, because he's OK with almond or rice milk. He is 14 so I told him I wouldn't enforce a strict CF diet -- it's his choice. But from his reaction I think he knows in his heart that he's going to have to do this. What can I do to help him?

If he chooses to follow a strict CF diet, I will probably move toward a CF household, but that's going to be tough on me. My other son (not yet tested for anything) already avoids most dairy, and my husband doesn't do a lot of dairy either, so I'm the one who (besides my son) is going to be the most inconvenienced.

-Elizabeth

[cyberprof]

These are his results:

He has 2 copies of the gluten-sensitivity gene, and a clear positive to gluten (even though our household is almost entirely gluten-free and he gave up gluten on his own several weeks before the test). He doesn't have the Celiac-specific gene but I don't think that matters much. He's OK with going without gluten because he's already figured out on his own that it makes him feel like crap. But he was really upset about the dairy results. Positive is anything 10 or greater. Enterolab recommends that results only be considered positive or negative, not "barely positive" and a strict CF diet be followed with a positive.

My son's really upset about losing cheese and ice cream. He can live without milk, barely, because he's OK with almond or rice milk. He is 14 so I told him I wouldn't enforce a strict CF diet -- it's his choice. But from his reaction I think he knows in his heart that he's going to have to do this. What can I do to help him?

If he chooses to follow a strict CF diet, I will probably move toward a CF household, but that's going to be tough on me. My other son (not yet tested for anything) already avoids most dairy, and my husband doesn't do a lot of dairy either, so I'm the one who (besides my son) is going to be the most inconvenienced.

-Elizabeth

Elizabeth, My son went gluten-free and CF at the same time in 2008 (he was 14-1/2). He had noticed a dairy problem and the symptoms helped him see cause-effect, so that may or may not help your son. Now my son has gluten effects too, which he didn't at first.

I bake only CF now and 99.9% of the meals I cook are CF (all are gluten-free). I add sprinkles of cheese to my and DH's tacos but I wouldn't do that if DS was unhappy (he's not).

Earth Balance margarine is da BOMB! I cook and bake with it. DS puts it on waffles and mashed potatoes. I put it in frosting for cakes and I (previously a margarine-hater butter-purist) can't tell the difference. Some recipies I cook with canola oil or olive oil as a sub for butter but not too many. You can find Earth Balance at Whole Foods and PCC and some chain grocery stores.

The other way he copes is with good recipies. I have a fantastic, quick (and cheaper than a mix) brownie recipie that I converted and it's wonderful. I also have carrot cake and peanut butter cookie recipies that are so good that my non-gluten-free/CF daughter loves them. I also have a pizza recipie but have found that pizza is individual and you may need to try a few to find one that is his fave. (I tried 8!) Amy's has a gluten-free/CF frozen pizza that is a good (expensive) treat. There is good vegan cheese for topping a pizza...not perfect but good.

Let me know if you want me to post or email the recipies.

The other thing that helped is that my son started growing. He was 92 pounds as a 12 year old and 96 as a 14.9 year old. He had basically stopped growing at 5'3". Now he's 5'10" and weighs 110- still skinny but he is in puberty (wasn't at 14.9). Not sure if your son has growth issues or not but that is a big incentive for a boy!

And I don't monitor my son. I help and give advice and cook like a maniac to make him happy but if he cheats, I can't stop him- that's my attitude. Just like with overweight kids...you can only advise: Once they're out in the world with money and/or a car, bike etc. they can defy their parents. He hasn't cheated (to my knowledge) with gluten but does sometimes with dairy. He takes Lactaid which helps some. But his friends are all so supportive and he has one girl classmate that is gluten-free/CF too so that helps.

Hope this helps and best of luck to you!

~Laura