1 Yr Follow Up Visit

[mart]

Hello. Today, my son went for his 1 year follow up visit with the GI.

1. He has been gluten-free for 10 months now. He's gained roughly 6.5 pounds and grown 3 inches. Does anyone know if this is good growth for an 8 year old child? I've heard of some kids on this board growing 6 inches and more their first year gluten-free. The doctor was very pleased, but my son is still in the 10th percentile for height and weight.

2. Also, I tried to voice my concern that over the last few months he's been complaining of stomachaches again. He totally dismissed this. He said that "he has celiac disease and it's expected he'll always suffer from some stomach pain." Do you guys think this is true? I thought if you were truly 100% gluten-free (which I know he has been) you're not supposed to get any symptoms after you've healed. Six months into the diet he was doing great but then started complaining of pain again.

3. So then, my husband asked him about casein. We told him (again) that ds was diagnosed allergic to casein at birth, and that we wondered if his recent stomachaches can be from a casein allergy. Also mentioned that when he drinks a lot of milk, his stools are mushy and a light green color. His response was a firm, "you don't want to go there...his diet is hard enough as it is and taking away dairy would be horrible for him." He looked so annoyed that I didn't want to even mention that I've read in the Clan Thompson website that many celiacs are also casein intolerant and that this can also cause malabsorption issues. I guess I'm a little afraid of him and felt embarrassed over asking these questions. His response was that my son is no longer casein intolerant, but that he is lactose intolerant and that I should just increase the amount of Lactaid I give him (from 2 Fast Act tablets to 4). Since I've voiced my concerns about casein in past visits, I kind of expected this attitude, but thought that maybe he'd since had a chance to catch up on the latest research involving a link between celiac and casein intolerance (guess not). Little does he know, but we sent in a stool sample to Enterolab last week for my son to find out if he is in fact casein intolerant. My husband is now kind of mad at me because he says that we ordered that test unnecessarily and spent a small fortune on it. I guess we'll see what it shows, but the point is that even if the result is positive, dh will now not back me up on putting son on a casein free diet because this doc thinks that casein intolerance will not result in malabsorption. BTW, we tried a casein free diet for a week with my son and I don't know what to make of the results. He didn't poop for several days, continued to have stomachaches (however much less) but was miserable not being able to eat real cheese and milk. What should I do? I almost feel like I'm becoming neurotic over this. I just want to do right by my son.

Anyway, sorry this post is so long. I'm just downright confused and am looking for some direction from those I consider the real experts (the people on this site that live with this disease). Thanks for listening.

[Smunkeemom]

1 I have no clue, but growth is always good, so be happy for that.

2 As far as I know, as long as he is healed he shouldn't be in pain, unless he

a isn't fully healed

b is getting gluten somewhere

c has another problem

3 if he has tested pos. for a problem with casien he still has it, you don't outgrow intolerances, you may go back and forth from being symptomatic, but you always have it. It's not so hard to go dairy free, it's about the same as going gluten free, you miss some stuff, you screw up at first, after a while you find new things you like, and then it's like second nature and you feel better so you really don't want it any more.

as far as your doctor, I would calmly explain to him that life is hard sometimes, and you are fine with a restricted diet if it means your son isn't in constant pain.......if he doesn't seem to go with that I would start shopping for a new dr.

[Ursa Major]

Hi, and welcome to this board. You're not neurotic, and actually, you're probably right. Your doctor sounds like a jerk (sorry, just got back from a visit to an idiot dermatologist, so I'm kind of mad at doctors in general right now), don't listen to him, he doesn't know what he is talking about.

People with celiac disease are NOT expected to always have stomach aches if gluten-free, if gluten is their only intolerance. Especially children are expected to heal 100% when gluten-free.

3 inches growth in 10 months is excellent. It's true that some kids grow more, but not everybody does. I would be concerned if he hadn't grown at all.

I agree with you, that your son is probably intolerant to casein. I don't think you outgrow that! If it would have been only a lactose intolerance, it would be possible to outgrow it when the villi heal. But not a casein allergy (that is just my opinion after the research I have done).

And what a stupid reason is that, not to cut out casein because it's too difficult? If it causes a problem, and your son has stomach aches, it better be possible. It's true, it won't be easy, but stomach aches are no fun, either, and the casein will damage his health if that is the problem.

Would he say the same thing if it was a deadly peanut allergy? I don't think so.

[mart]

Thank you Ursula, I needed to hear this. Guess I thought I was going neurotic because he almost sounded like he was up to date on info, as he told me that the standard is no longer 3 biopsies and a gluten challenge, but going on a gluten free diet and letting the results speak for themselves. I was wowed by his knowledge of this new way of thinking since I'd read the same thing on line recently. Guess he justs disagrees strongly about the casein thing. He's told me more than once that most children outgrow casein intolerance by age two. Is he definitely wrong about this?

[Smunkeemom]

I tried to look it up for you, but the only page that I found that says they grow out of it, also said that people "grow out of" celiac too, and we all know that is WRONG.

I do have a question though, if kids grow out of it, then why do so many adults have the prolem?

[mart]

Thanks for looking, Smunkeemom. I think this doctor's response to that would be that most people outgrow the casein intolerance, but some do not. In any case, I'm wondering why he wouldn't want to test my son to know if he's one of the ones who didn't outgrow the casein intolerance. ??

[mart]

Oh, I forgot to mention that he also wasn't interested in hearing about my son's leg and joint pains.

[Ursa Major]

Oh, leg and joint pains are a dead giveaway for other intolerances! My joint and back pains were caused by lectins (of which gluten is one, dairy another), and my muscle pains (very bad in my legs especially) by salicylates.

Check the links in my signature for more info, if you're interested.

[taweavmo3]

First of all......I think the growth is very good. My dd grew four inches in a year, and gained 10 pounds. She is still only in the 5th percentile for height, but at least she's on the charts now! She continues to have growth spurts though, her foot grew a whole size in less than four weeks.

Second, forget what that doctor told you and try to not let it get you down. I know that feeling all too well. It's very easy to start to doubt yourself when a doctor makes you feel like that, but don't! I think you are onto something with the casein intolerance....especially if he didn't have a bm for a few days w/out dairy. It could have been having a laxative effect for him. My daughter did the same thing when I took her off dairy.....I had to increase her fiber intake.

And if it makes you feel any better, my dh thought I was a bit neurotic making Emmie casein free as well. BUT, he spent a week at home with us and finally saw how Emmie reacted when she had dairy. He is a total believer now. It's nice to have his support, but I knew I was right all along, he just wasn't home enough to see what I was talking about.

I'm also still in shock that your son's doc would even utter the words that casein free is too hard, so don't even go there. WTF is that? That infuriates me. Yes it may make his life a bit more difficult......but if diet restrictions are the only adversity our kids have to face, I think they are pretty lucky. And if it makes him feel better, that's a good thing.

Anyway, I'm rambling as usual! My kids have probably turned the living room upside down while I've been posting this. Take care, don't let that doc visit get you down....and keep trusting your instincts!

[inquirer]

I think as a Mom you have to trust your gut. You know your child and you know that something isn't right. The doctor doesn't live with your son. You do. I'm sure you're not looking forward to removing one more item from your son's diet. And you didn't waste money by doing the Enterolab sample. Information is never a waste of of money, only ignorance is. What about goat's milk and goat milk products? If he's only having problems with cow's milk maybe goat milk wouldn't bother him? By the way, if you do try goat milk don't tell your son first. And you might try mixing it half and half with cow's milk at first so he won't notice a change in the flavor. Good luck!

[tammy]

Mart.

It sounds like you are right and I would tend to agree with Ursula. I am curious about the results from Enterolab. I think that it(Enterolab) was a good choice for you and your son.

He must learn now how to care for his health.

Best Wishes to you, your husband and your son.