How Long Before My 5yo Starts Gaining Weight?

[mamatide]

Hi all,

I'm new to this forum but have been reading you all for a while. I have a 5yo who displayed all of the textbook signs for Celiac (unexplained anemia at 1yr, below the curve at 1 year (17.1 lbs), perpetually bloated belly, straw coloured floating and greasy stool, irritable and negative outlook, pale, underweight) and brought her to the doctors back in Feb/March of this year. While the round belly was "cute" and "toddler-like" when she was 2-3, at almost 5 years it wasn't so cute any more. She had such a perpetually sore belly that she stopped compalining about it. I'd ask her how she was "Great" was her answer, but if I asked her how her belly was "Really Really Sore" was her answer.

Docs ran bloodwork and lactose intolerance tests. I didn't ask for enough details but he said one of the blood tests was "indicative" of celiac disease and referred us to a ped. gastroenterologist.

Only problem? The CONSULT with the ped gastro won't happen until "maybe" September 06, and if that happened, the biopsy would be "possibly" 4-6 weeks later.

After tucking her in with tears in her eyes and begging for the pain to stop, DH and I made the decision to go gluten-free on April 1st and document her in a diary while waiting for our someday appt with the ped. gastroenterologist.

First week was awful. She was in more pain, she was more nasty than ever, but we persevered. After 3 weeks the bloating was gone and she had her first normal stool. Next day, no pain. Since then we've had painful incidents off and on and we've been able to correlate them back to gluten exposure and our inexperience. We've been on our own discovering gluten-freedom of various foods, depending on the internet, some books, friends online and what not.

She started at 36.5 lbs and through the last 7-8 weeks she's gone as high as 38.5 lbs but this morning is back to 36lbs.

She looks better, she's not in pain, she's committed to the diet and a pain free life... but how long should it take for her to start packing on a few pounds? She's still in her baby car seat for crying out loud!

I'd appreciate any been there done that experiences where kids are concerned. It's the only piece of the puzzle that we'd like to see resolved. All else is better now (normal-ish stools (formed but still light in colour, with occasional bits of food in it), she's pink all over (rosy cheeks, arms, torso!), she's in a great great mood, she has even more energy than ever before, she has no pain in her belly, and she has abs.

Thanks!

mamatide

[KaitiUSA]

It can take some time to heal and I am sure you will start to see the weight gain. It took me like 5 or 6 months to see any real difference in my weight but since your child is younger, it may be sooner because younger diagnosed can sometimes have not as much damage. It sounds like she is doing good with her weight going up like that. Sometimes in the mornings people can weigh less.

[2Boys4Me]

My son started the gluten-free diet about 2 1/2 months before his sixth birthday. He's been on the diet for 9 months and he's gained about 5 lbs. He had never made the miraculous weight gain and shooting up in height that I hear about. He seems to be (when his brother's not around) a happier child. He started grade one at 33lbs. In Canada, kids are required to be in a 5point harness child car seat until 40 lbs. I told him I'd put him in a booster seat when he was 35lbs, otherwise he'd be there forever. My kids come from two tall, skinny parents, and will be tall, skinny teenagers who are the only 16 year olds learning to drive while still in a booster seat . My kids are 6 1/2 (38-39lbs) and 8 1/2 (48lbs - not celiac...just skinny), you have to look at the big picture. My niece's doctor was concerned because she was so short...well, Mom's 5'5" and Dad's 5'6" - you do the math. She's not going to be a six footer.

She will gain weight when it's time. Try not to worry, and just keep checking for hidden sources of gluten and cross contamination.

I'm sorry that she was in so much pain, but it's great that the diet is starting to work. Look at it this way...she's a year younger than my son, and about the same weight, so she's doing great. My son's only symptom was a slightly protruding belly and anemia. At least your daughter knows when she's accidentally ingesting gluten so you can double check everything you feed her. My son's belly still sticks out a bit, and I know he's not getting any gluten at all, even from cc or hidden sources. I wish he had abs.

[Ursa Major]

Mamatide, it sounds like your daughter has made great strides. She looks healthy, she is happy and painfree, she sounds like she is doing great. Her intestines must be healing for those changes to have happened. Healing takes energy. My opinion is, that right now her body is using all the energy from the good food (which is finally actually being absorbed) for healing the damage. When that is accomplished, weight gain and growth will happen. Be patient and glad your daughter is so much healthier.

All the best!

[Tony'sMom]

I'm glad to hear that your daughter is feeling better, that's great news!

I've learned not to focus on the scale or the numbers. As long as my son is eating well, feeling good,and looking healthy then I'm happy.

[mamatide]

I'm glad to hear that your daughter is feeling better, that's great news!

I've learned not to focus on the scale or the numbers. As long as my son is eating well, feeling good,and looking healthy then I'm happy.

Thank you all for the reassurance. She is really feeling better and her shape is changing even if the scales aren't showing the result. The 36lb must have been an abberation because she's back to 38lbs in the last couple of days. So so lean, but neither of my kids were big-boned.

She continues to thrive on the gluten free diet.

I will get myself tested now - trying to stay on gluten to get a good reading, but it's tough when the household is gluten-free (well, about 95%). DH, older DD and I eat gluten at lunches.

I really appreciate all of your assistance.

mamatide

[TCA]

Bless you for taking such good care of your daughter. The diet trial did it for us after inconclusive tests, so you're probably not missing much without the GI. My son grew a lot quickly, but is leveling off some now. He's still skinny, but so is his dad. He's also a healthy skinny, if that makes sense. He's not going to be a linebacker! If your daughter is thriving, the rest will fall into place. Good job for taking so much initiative!