Recovery Time

[jadesmum]

Hi, I just posted this in the recovery section but thought I would post it hear as well.

My DD was diagnosed with Celiac disease 3.5 weeks ago and has been on the gluten-free diet ever since, as far as we know she hasn't had any Gluten (99.9% sure).

She is 18 months old and her tummy kept getting bigger and bigger and arms and legs thinner. She had always had a pot belly and everyone said its normal till all of a sudden people said it looks strange. She also had lots of poos (which people said was normal) and moody (which I put down to me been pregnant again). Anyway long story short she had a biopsy and she had no villi left, so they said it was an extreme case at such a young age.

So in the 3.5 weeks she has been gluten-free her mood has improved alot and her tummy slightly gone down but nothing major, poos are still frequent but not as runny, and she isn't spewing up as much. I am a little disheartened as they said she would be better in 6 weeks, but I really can't see in another 2.5 weeks that her tummy will go. She hasn't put on any weight yet either (she is only 10kgs), although her ribs are not as noticable. Why do they say 6 weeks? Is something magical going to happen to her in the next 2.5 weeks to make her completley better? I just can't see it. We thought her little pot belly was so cute before, now it just breaks my heart looking at it as I realise what pain she must of been in. I just can't stand it

Regards

Belinda

[shayesmom]

My DD was diagnosed with Celiac disease 3.5 weeks ago and has been on the gluten-free diet ever since, as far as we know she hasn't had any Gluten (99.9% sure).

She is 18 months old and her tummy kept getting bigger and bigger and arms and legs thinner. She had always had a pot belly and everyone said its normal till all of a sudden people said it looks strange. She also had lots of poos (which people said was normal) and moody (which I put down to me been pregnant again). Anyway long story short she had a biopsy and she had no villi left, so they said it was an extreme case at such a young age.

So in the 3.5 weeks she has been gluten-free her mood has improved alot and her tummy slightly gone down but nothing major, poos are still frequent but not as runny, and she isn't spewing up as much. I am a little disheartened as they said she would be better in 6 weeks, but I really can't see in another 2.5 weeks that her tummy will go. She hasn't put on any weight yet either (she is only 10kgs), although her ribs are not as noticable. Why do they say 6 weeks? Is something magical going to happen to her in the next 2.5 weeks to make her completley better? I just can't see it. We thought her little pot belly was so cute before, now it just breaks my heart looking at it as I realise what pain she must of been in. I just can't stand it

Regards

Belinda

Belinda,

I am so sorry to hear of what you and your dd are going through. It is so scary and heart-rending when all of a sudden, the symptoms suddenly have a cause and you feel terrible for not having made the connection earlier (as well as angry that the doctors also didn't see it in time to save your child a lot of pain).

I don't know what to tell you on the 6 week "recovery" time. Personally, I would think that it would take a considerable amount of months for that kind of damage to be repaired....I may be wrong.

You may want to consider eliminating dairy and soy for a few months until you see these symptoms disappear. The continued frequency of BMs is normal to an extent if your dd is on dairy. With total destruction of the villi, there is no way that your dd can break down lactose right now and so dairy would create more problems for her. In some kids, an allergy develops. Soy is also very difficult to digest and could also cause gastrointestinal symptoms such as bloating as well as block the uptake of vitamins and minerals that her body needs to heal. My dd did wonderfully when I took all three of these out of her diet and began gaining over a pound a month (whereas before, she'd gain a pound over a period of 3-6 months). Like you, I noticed definite behavioral changes when going gluten-free. Dd tolerated dairy fairly well at that point but within a few months, couldn't handle it at all, even in the most minute amounts. It really seemed that the longer she was gluten-free, the worse the symptoms from other foods.

All that I can suggest is to keep an eye open for other potential food problems. I would think that you'd see some definite improvements with going gluten-free, but I don't think that any doctor can put a time limit on recovering....just like I don't think that doctors can tell a cancer patient how long that they have to live. They are simply making an "educated" guess on it all. Most will not even counsel you to remove dairy from the perspective that you need lactase to break down the lactose in milk, and the enzyme lactase, is produced in the tips of the villi....which are completely destroyed in your dd's case. I hope that I am wrong about this.....but from my experience with doctors.....there is so little nutritional guidance that you may as well be in a vacuum.

I truly hope that your dd gets much better shortly. Just follow your instincts and don't be afraid to ask quiestions. It's always hard at the beginning but it will get easier and you will see your dd make excellent progress before long.

Vicky

[lovegrov]

Recovery time differs depending on the person, but I've definitely never heard of a full recovery in six weeks, even among the very young, and absolutely not that fast if the villi are destroyed. Mine we completely flat and although I started slowly improving almost right away, it was months and months before I was back to normal.

No doctor can put a definite time frame on it. Keep her gluten-free and you'll see the difference.

PS -- If she's on dairy it might help to take her off that at least for a while.

richard

[VydorScope]

Hi, I just posted this in the recovery section but thought I would post it hear as well.

My DD was diagnosed with Celiac disease 3.5 weeks ago and has been on the gluten-free diet ever since, as far as we know she hasn't had any Gluten (99.9% sure).

She is 18 months old and her tummy kept getting bigger and bigger and arms and legs thinner. She had always had a pot belly and everyone said its normal till all of a sudden people said it looks strange. She also had lots of poos (which people said was normal) and moody (which I put down to me been pregnant again). Anyway long story short she had a biopsy and she had no villi left, so they said it was an extreme case at such a young age.

So in the 3.5 weeks she has been gluten-free her mood has improved alot and her tummy slightly gone down but nothing major, poos are still frequent but not as runny, and she isn't spewing up as much. I am a little disheartened as they said she would be better in 6 weeks, but I really can't see in another 2.5 weeks that her tummy will go. She hasn't put on any weight yet either (she is only 10kgs), although her ribs are not as noticable. Why do they say 6 weeks? Is something magical going to happen to her in the next 2.5 weeks to make her completley better? I just can't see it. We thought her little pot belly was so cute before, now it just breaks my heart looking at it as I realise what pain she must of been in. I just can't stand it

Regards

Belinda

Belinda,

I can only speak from the experence with my own son. My son went gluten-free also at 18 months old. We noticed a DRAMATIC CHANGE with in 3-4 days. He is now about 2 1/2 and we still noticing continued improvement.

It all depends where they start, and how far they have to go. The younger they are the faster they heal, so she will never recoevery faster then she can now!

Now heres the thing, you have to be 100% perfect on gluten-free or it will set you aback serveral weeks PER incident. This is very very hard with small childern, heck it can be hard on adult... but thats notthing compared to a child that will stick ANYTHING she finds in her mouth. Every person that cares for her, babysitters, teachers, friends, family, doctors, etc has to be on the ball, and right on her.

We made our entire house gluten-free (this was before I got my DX), otherwise I do not think we could have pulled it off.

Hope that helps some.....

[jadesmum]

Hi, sorry for the late reply, never seem to have any time these days, just wanted to say thanks and that I read your posts at the time and they were very helpful for me.

VydorScope, thanks and yes it is so hard with a child, I told playgroup and she loves play dough and they are making here special stuff, lucky they thought of it cause I never would of. we are seeing lots of changes still her tummy is still on the big side but is much better, every day seems to get a bit better. Her mood is so much better improving all the time, she now has so much energy it is amazing.

Richard, thanks, we have got her on lactose free milk/yogurt when we put her back on normal yogurt her poos have started to get a bit runnier again so I am going to talk to dietitian again and see what is happening (she said to start the normal yogurt again).

Vicky, thanks so much your post helped me put things in perspective. She hasn't put on a lot of weight yet about 200 grams in 6 weeks, but she actually looks a lot better her face is filling out and her arms and legs are looking less starved. I don't know why they said 6 weeks as now I see it is totally unrealistic. Yes maybe I have seen a dramatic change in 6 weeks but definitely not a full recovery.

Thanks again everyone and sorry for the late reply (things are hectic over this way)

Belinda

[lisabp]

My son was diagnosed at about 18 months too. Same "toddler tummy" thatr just kept getting bigger. His mood was better in 1 week and his appetite in 1 month, but the tummy took a long time to disappear. It took more like 4 months to go down to where you didn't really notice anything was wrong and probably 6 months to completely look normal. His weight was back up in normal range (he was at 10%) at 50% after 6 months too. His height is still catching up but he's so young we don't know what his real height should be.

I rememebr just WAITING for that tummy to go down because it was a constant reminder of the celiac and the pain. It will go away. I agree with the other messages to try and limit the dairy for a bit. We didn't need to do that but I know many who have. We never had poopy problems. Now, we did have poopy problems because the doctor had put my son on a medicine for stomach and intestinal irritation and it gave him loose stools *which he never had when eating wheat??).

Be patient and the stomach will go down. The key is mood and appetite. That means your child is feeling better. That's the most important thing.

Lisa

[Guest nini]

I remember the bloated tummy well... we used to joke that my dd looked like a "little ethiopian child" with her stick skinny arms and legs and that pot belly tummy...

you def. have to make sure she is 100% gluten free, even lotions, shampoos, crumbs, pet food that she might get into, on hands, etc...

also I agree that you probably need to cut out dairy and soy for a while as well, if her villi were completely flat then she is having a hard time absorbing anything. Keep her diet extremely simple for the time being. Find just a few 100% safe foods that are also nutritious and gentle on her injured digestive system.

We had to supplement my dd with pediasure shakes for a while, look into something like that... talk to a nutritionist that is knowledgeable about the gluten free diet, and soy free and dairy free as well... after she begins to heal, you should be able to re introduce dairy, unless she's allergic to it.

does she take a multi vitamin? if so make sure it is gluten free as well.

[jadesmum]

Hi

Nini, what are the pediasure shakes? Just wondering does toothpaste have gluten, the one I use doesn't seem to have ingredients on it, bit weird might give them a call. I will check all the shampoos and stuff now too, thanks for the tip. She is on a iron supplement as her iron levels were very low, it seems to be having a good effect as she has got more colour in her face now. It makes me sick to think about now, but because I was pregnant at the time everyone used to joke that Jade was trying to look like me because her tummy was so bad, lots of people commented on how cute it was... I shudder at the thought now.

Lisa, thanks so much your post actually made me feel alot better, I will try not to be so obsessed with the tummy going down. Did his hips get wider too, as it seems Jade has no legs hips or bum. She is also very short now, when she was born she was on the 97th percentile for everything, now her height is 10th, weight 25th. I am hoping she starts to take off again soon.

I think I will cut back on the yogurt again as her stools do seem runnier, and even though they said I could give it to her now, I think I will wait a bit longer.

thanks

Belinda

[Guest nini]

pediasure shakes are just a nutritional supplement shake designed for kids... kind of like a milk shake, but they do have some that are dairy free... ask the pediatrician about them as we got them initially as samples from the Dr.s office. There are several companies that make them so you will want to make sure whatever brand you get is gluten free... (and possibly dairy free too) if you can't find one, a nutritionist may be able to give you a recipe to make these at home.

I really don't know about toothpaste. I've heard that some could contain gluten, but I haven't heard of one specifically that does. Check with the manufacturers.

[VydorScope]

Someplace around here I have a list form carnation, we use thier instant breakfastest to sumpliment for a while. My son hated the pedisure stuff, but toddlers are known to be picky! Search the old posts here I posted thier gluten-free list a while back, and they are made by Nestle, which is a "safe" company.

Just an alternative, my son like them at least!