Confused About Villi Growth

[kenyonsmommy]

I'm confused Re: the villi growing back thing. My son was diagnosed about 5 weeks ago, he has been gluten free for about that long. His Dr. told us that the villi grown back in about 5 days. Actually, he told me that everyones lining renews itself every 5 days. So, how does it take so long to heal? My son has gained 4 pounds in the one month he has been on the diet, he looks like a new kid. His poops are still very loose and watery, actually the last few days have been a little worse. He is also on iron, a high dose b/c he was severly anemic when he was finally diagnosed. I know this can cause hard poop, so was the iron masking what i thought was an improvement in his bowel movements due to the diet? Sounds like it. He did not get the iron for about two days earlier this week because I ran out and kept forgetting to get it.

Also, how long does it take for kids to have a reaction when they do get glutened? yesterday, my daughter had preschool graduation and my son grabbed a mini cupcake off the table. before anyone saw him he had half the frosting licked off the thing. He has not had any big changes since then, except maybe the watery stool.

With this said, does anyone know of any experts on this disease? My son was seen at Strong Hospital in Rochester, Ny, which is a pretty good hospital. However, no one seemed to be able to give us any good answers. Even the nutritionist we saw knew less that we did, all she gave me was some copied pages out of a book, then told me to look on the internet. Thanks lady, here's my $50 copay. very frustrating.

[Smunkeemom]

I don't know about the "5 days" thing, I have never heard that. It took my daughter 3 or 4 months to improve to the point that I could say "hey, this diet is the answer" (even though she 100% had celiac, I was still in some denial about it)

As far as how long he can go without symptoms of getting glutened, it changes from person to person (just like how long it takes to feel better) he might have symptoms he can't tell you about, like brain fog (trouble concentrating) or be more iritable, or like me get really bad headaches.

Some people don't get many symptoms at all with gluten in their system, but they still get damage.

You need to explain to him as best you can that sometimes food can make him sick and he needs to ask you before he eats or drinks anything. It's important because every little bit of gluten can damage him and makes it longer to feel better.

[kenyonsmommy]

I think that I am also still in some type of denial, I keep thinking "what if they were wrong", but the biopsy was pretty classic. I think I'm still partyly in shock as well. I have explained to him that he will throw up when he eats some things, he can kind of understand this since he did so much of it for several months. he then started to use it as an excuse, like when I tried to get him to eat green bean, he touched it to his lips and told me "no mommy, I throw up". He seems to be hungry all the time.

He has always been a fairly ornery kid, he cries easily and gets mad often. he has become much happier since being on the diet, but I just chalked the continued bad attitude up to genes( I blame it on his hot head father). Maybe it just takes longer for those kind of things to subside. My husband keep using the excuse that he's only 2, which i understand, but i'd like to go to Target without him screaming the entire time over just ablout everything.

[Smunkeemom]

2 year olds understand simple rules only if they are applied evenly and all the time.

I tried to keep my rules to less than 5 words when I was dealing with my girls when they were two, I would make them rhyme if possible.

"sit down or get down" (when they were standing on the couch, they knew that meant either sit on your bottom, or get off my couch)

"feet go on the floor" (not on the table)

I found when they were throwing fits in the store it was easier to leave my basket and walk the kid to the bathroom. Once in there I would say something like

"go ahead and get all your angries out, I will wait" and once they were done screaming I would let them tell me what was wrong. Most of the time it was something I wasn't willing to give in to so I would say "I know you are upset because you can't have the toy" (for example) "but we can not act like this in the store, if you can go back out and be nice we can continue shopping, if not we will go home and I will go later when someone can watch you at home"

You actually have to be willing to leave your basket, and immediately leave the store if either a) they say they can't be good or they say they will be good and then whine again once you get back to the cart.

I only had to leave the basket once with my oldest and twice with my youngest.

I know that's not celiac related, but a friend told me to do that and it really worked for me. Thought you might want to know.

[taweavmo3]

I have never heard about it taking five days to heal either. Our GI just said that since it took our daughter two or more years to get as sick as she did, we should expect a long healing process as well. It has taken alot of time. We saw improvement in the beginning, but it took at least 6 months before she could tolerate dairy again w/out having loose stools. Then once we did add it back in, her moods became atrocious again.

She is casein free now too, which is difficult sometimes, but it's well worth the trade off for my sanity. I've been dealing with her major tantrums for over 2 1/2 years now. I used to be able to dismiss them b/c of her age too, like your little boy......but after two years of waiting for her to "grow out" of her difficult phase, I figured it must be something else in her diet. Taking out casein has helped tremendously, and I can now go to the store without feeling like I need a margarita or a sedative afterward!

[happygirl]

You might want to read Dr. Green's book "Celiac Disease: A Hidden Epidemic"....he is a leading Celiac physician from Columbia University. It gives a lot of background and info on Celiac and might be helpful to you!

Good luck!

[CarlaB]

This is from the Mayo Clinic's website talking about celiac disease: "Complete healing and regrowth of the villi may take several months in younger people and as long as two to three years in older people."

[jerseyangel]

Thanks for that Carla--that would explain a lot for me.

[kenyonsmommy]

I'll have to read up on this, thanks for the info. It s been hard trying to muddle through this just on internet power alone. I want, but I know I will not get, someone to just come to my house and say "OK, this is what you have to do, what to change, what to eat, etc. I love my doctor,but After the diagnosis, the doctors were pretty much not helpful.

smunkeemom.......... thanks for the advice...its been a little difficult with Kenyon just because when he was sick and we did not know what was wrong, i think we indulged him a bit. now he is a bit demanding. I have to get tougher, I know this, I just have to do it before its too late

[Smunkeemom]

I'll have to read up on this, thanks for the info. It s been hard trying to muddle through this just on internet power alone. I want, but I know I will not get, someone to just come to my house and say "OK, this is what you have to do, what to change, what to eat, etc. I love my doctor,but After the diagnosis, the doctors were pretty much not helpful.

that's pretty typical, I head up the support group for parents and kids (mostly we are parents of preschoolers with celiac) and ALL of us got a "yeah, uh... keep them off gluten" from the doctors, no help, no explianation of what gluten is, nothing.

Luckily I found this site.

smunkeemom.......... thanks for the advice...its been a little difficult with Kenyon just because when he was sick and we did not know what was wrong, i think we indulged him a bit. now he is a bit demanding. I have to get tougher, I know this, I just have to do it before its too late

I did the same thing with Annika, I am still 2 years later trying to "fix" her little wagon sometimes, she got way over indulged, esp. since she was in the hospital for a month and ended up on a feeding tube. I let her get away with murder for about 6 months, I was so thankful she was alive. I really really screwed up.

It's a mom thing, we can't stand to see our babies sick. You can be tough, I know it, and remember, even if he says "I hate you" when he grows up and is a successful, honest, great to be around person, he WILL thank you. I promise.

[kenyonsmommy]

yeah, he learned the "I dont like you" already from his 5 year old sister, but he screws it up and says "I don't like me mommy".

I'm glad to hear I am not alone in the "making things worse" department, but you are right, I was just happy that he was still alive. Two weeks before he had his biopsy, they did a CAT scan because the Ped GI thought he had cancer because of some very enlarged lymph nodes, and his other vomiting, losing weight issues. They saw a spot on his intestine, and we had to wait an entire weekend to have it read properly by an oncologist because it was Friday. Luckily, it was nothing, but it was a very long weekend. My husband basically sat the couch all weekend just holding our son. After that, the celiac diagnosis was great, but now we are back to reality. I have decided that I am going to the library on my lunch tomorrow and taking out every book they have on celiac, if they have any.

[Smunkeemom]

yeah, he learned the "I dont like you" already from his 5 year old sister, but he screws it up and says "I don't like me mommy".

I'm glad to hear I am not alone in the "making things worse" department, but you are right, I was just happy that he was still alive. Two weeks before he had his biopsy, they did a CAT scan because the Ped GI thought he had cancer because of some very enlarged lymph nodes, and his other vomiting, losing weight issues. They saw a spot on his intestine, and we had to wait an entire weekend to have it read properly by an oncologist because it was Friday. Luckily, it was nothing, but it was a very long weekend. My husband basically sat the couch all weekend just holding our son. After that, the celiac diagnosis was great, but now we are back to reality. I have decided that I am going to the library on my lunch tomorrow and taking out every book they have on celiac, if they have any.

did they ever really check out the 'spot' on his intestine? I ask because my daughter (the young one) had an Intussusception that was caused by swollen lymphs in her intestines (from we think the celiac) and it caused an obstruction, she got pretty sick, but it took them a good 3 weeks to find it (in which she lost 40% of her body weight) but they said hers was pretty bad and had been there for a while (the doctors kept telling me she had a virus. )

anyway, they can do an ultrasound to see if he is okay, that's how they finally found hers, intussusceptions are usually in the large bowel, but with kids with celiac they are in the small bowel which is why they have to do the ultrasound, they can't see them any other way, they just show up like spots or smudges.

I don't want to scare you or anything, she is fine now, but if he is still sick and not gaining weight it might be worth checking out, after all ultrasounds aren't invasive and it could give you an answer. The swollen lymph thing reminded me about it. They fix it with surgery, it's like a 15 minute procedure, they just open them up, untangle everything and close, she was fine in about 2 days pain wise, and has a very small scar.

[kenyonsmommy]

The oncologist told us it was a loop? but that it would work itself out. It was in his large intestine. He has gained significant weight and does not seem to be in any pain. I will ask his ped about that though, that is very interesting info, thanks.

[Smunkeemom]

The oncologist told us it was a loop? but that it would work itself out. It was in his large intestine. He has gained significant weight and does not seem to be in any pain. I will ask his ped about that though, that is very interesting info, thanks.

yeah, I would ask. He could be fine, but I just worry (maybe too much)