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Recovery Time

jadesmum

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jadesmum Rookie
jadesmum
Posted

Hi

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

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Rikki Tikki Explorer
Rikki Tikki
Posted

Hi Belinda:

I think within the next few weeks she will feel better. I don't know that they can put down an exact date, but they are giving you a date where she will show improvement.

Best of luck and welcome to the boards B)

par18 Apprentice
par18
Posted

Hi Belinda,

Just saw your post. Your question I will have to say is probably the most asked of anyone who has had this disease. I think the problem with any answer is the number of variables that we are dealing with. Age, damage and sensitivity are just a few. I was 55 yrs old with villi damage when diagnosed in May 05. I was obsessed with the absorption/recovery time issue. Everyone including my wife and family doctor kept telling me to just let it happen. For me the time it took to get back to feeling good about myself was 3 months. That was not total recovery. It took me a total of about 6 to 7 months to get to where I think I should be. The estimates I read were 6 mo to 2 years. If I could have had one answer to one question during recovery it would have been how much of what I eat is being absorbed. I started on a diet of about 3000 calories a day. It included 3 meals and 2 snacks. I did not stuff myself. I think the key to gaining is to eat smaller amounts more frequently. Almost all of it was naturally gluten free food.(meats, fruits, veggies, dairy, gluten-free bread). The weight loss stop was immediate. Weight gain in the beginning was slow. With no villi to start with may mean it will be slower. Did the weight loss stop even though there was not any noticeable gain? I can tell you for about a month in the beginning I don't know if I gained hardly anything. My noticeable improvement was after 2 1/2 months of constant eating with no gastro symptoms. Another thing with me was I ate with no appetite in the beginning. Are you are feeding your daughter at regular intervals or just when she may be hungry? I will have to say 3 1/2 weeks is not a long time. As long as what you are feeding her seems to agree with her system then I would continue. One other thing I did in the beginning was to chart on a spreadsheet everything I ate including quantity and time to find out if I reacted in a negative way. Fortunately everything was ok and after about a month I stopped recording.

  • 3 weeks later...
jadesmum Rookie
jadesmum
Posted
  • Author

Hi

So sorry for the late reply, literally have not time with two little ones.

Sally, thanks for your support :)

par18, your response was very helpful to me, I have now tried not to be so obsessed with her weight gain. Now she is not eating during the night so figure she is feeling alot better and getting alot more calories absorbed. It has now been six weeks and her mood is incredible compared to before. I just have to relax on the weight, she has gained about 200 grams all up so it is going up. And her tummy is shrinking and her arms and legs getting meaty. I feed her regularly during the day and her appetite is amazing and I can see that she really enjoys eating now.

Thanks again for your replies and sorry for the late response.

Belinda

Lovinglife Rookie
Lovinglife
Posted

Hi Belinda! I'll be praying for your child's quick recovery. I think it will be a matter of weeks. And, look at the blessing, your child is still so young, so she won't miss gluten and grow up knowing already what not to eat.

Have a nice day,

Florence

key Contributor
key
Posted

I don't know about recovery for every child, but my son had an interesting thing happen recently. He is 22 months old and has been on the diet since mid-April of this year. He was happier after a week, started regaining his appetite pretty quickly too. He gained weight pretty quickly and his poopoo was less often, but for months he would have stools that I would say weren't a 100% normal. THey would have some undigested food and be loose, but he only had them maybe once or twice a day. Well after being gluten free for about 7 months, he suddenly has 100% normal poops everytime. No idea what made the difference. My son though is still small, but he is healthy now. He would be small genetically anyway.

Monica

jadesmum Rookie
jadesmum
Posted
  • Author

Hi

Florence, Thank you so much for your kind words, and yes it is a good thing we got it early. I actually got a blood test yesterday to see if I got the antibody.

Monica, that is very interesting as Jades stools are not normal, they are not as runny as they used to be, but they are not hard like a normal stool, I guess these things may take a little time :)

Belinda

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