Time To See Improvement?

[Rock7902]

Hi there,

Our 25 month old girl was recently tested positive test (blood only so far-high #s) for gluten/celiac. Textbook case seemingly - she has a VERY distended belly, always had constipation and has an off/on bum rash and fever from time to time, energy had decreased, clingy, etc... She's been gluten free for about one week - we're very concerned because we've read many personal accounts of babies in a similar state who had taken a turn for the worst and then ultimately diagnosed with gluten sensitivity or celiac. We feel lucky to have avoided this episode so far but that said she does have skinny limbs, is underweight and the belly of course is very concerning.

I was wondering how long it took for people in similar circumstance to see improvement in overall well being? I know it probably varies widely, but if anyone has any feedback on time it took to see, most importantly, indications of weight gain (evidence of nutrient absorption) and perhaps a disappearance of other symptoms - constipation , belly, etc...

[We don't plan on doing the endoscopy until much later because her weight (23 lbs) is a concern to us at this point and we feel it imperative that she is off gluten and able to absorb nutrients better in the near term - also since she seems so 'textbook' it does seem to pinpoint the problem.]

thank you kindly for any replies,

Sonny

[srall]

Yeah, I'd just get her off gluten. It appears she has celiac. My daughter probably was gluten intolerant from 1 year on, but she was diagnosed gluten intolerant (sensitive) at age 7 1/2. So I imagine it's different for a toddler? Some of her symptoms resolved immediately. Some of the behavior problems are still resolving 6 months later. I'm still trying to figure out what is a "behavior issue" from the gluten and what is her crazy personality. I have read that kids recover much more quickly than adults, who can take 6 months to 2 years to heal. I will say my daughter felt better right away. And she's a teeny tiny thing that is finally growing. I bet you will see a lot of improvement right away. You will be warned on this board to look for other food intolerances. I will second that. Dairy and CORN turned out to be huge culprits for both of us. If took a little while to figure that part out. It may be worth dropping them at the same time and then doing some testing with them in a few weeks. My daughter would get a pimply rash on her face from dairy, and hives and glutening symptoms from corn. Good luck. It's heartbreaking to see our kids suffering.

[Rock7902]

Thanks srall. It's so hard to get her to eat much of anything of substance - she drinks milk in the morning and evening and will have fruit here and there and cereal and cheese and at times meat - but overall she has been eating so little lately. I do wonder if dairy is a problem for her - we haven't seen much improvement - 7 days - I thought she had more energy within the first couple days but it may have just been because she was coming off a fever and then it came back after those couple of days. Seems to be gone now but her appeitite isn't all that encouraging. To boot, we have been coddling her since we found out so she kind of has sensed that if she holds out she gets what she wants - which is something we will have to fix also.

Yeah, if we cut out dairy and corn, I suppose she will shift to pasta and meats but not without a fight.

Any obvious signs if dairy is a problem? She doesn't have blood in the stool but she has been getting some irritation around her mouth and we wonder if she's allergic to dairy - she wasn't previously.

Anyways, onwards. Thanks very much.

[srall]

I think I started by taking dairy out of her diet (before gluten) because even though I was gluten/dairy/corn free I just didn't want to put my daughter through all that. I just did a lot of trial and error with elimination diets with my daughter. Once her system was clean, if I gave her milk or corn or gluten she had immediate and clear responses, such as rashes, hives, diarrhea, mouth sores and massive anxiety. The advantage I have is that I can talk to my daughter about her symptoms. She was feeling so terrible I think she would have eaten rocks for the rest of her life if it meant feeling better. I believe kids adapt pretty quickly. Your daughter might not eat for a couple of days if she's not getting what she wants but then she'll start eating what she's offered. I hate that part of this system because my daughter is tiny. I hope some moms with toddlers reply here, because I really do think it's a different deal when you've got an older kid vs a baby going through this...maybe not with symptoms but the approach to the new diet.

I think if you tell your daughter "This will hurt your tummy." or "This will help your tummy feel better." that she'll get that. Again, best of luck. I think you're actually lucky to figure all this out now rather than have to deal with behavioral and learning problems at school.

[newmom07]

I can only share our story and hope it helps. Like you, our child is about 2. We realized he might have gluten intolerance in Feb at age 20 mos. He weighed 23 lbs. His belly was totally distended and had the classic skinny arms/legs. He was clingy, and had been sick for 6 weeks seemingly constantly. We went gluten-free and he gained 2.5lbs in 6 weeks (10% of his body weight!) and his personality and energy returned. He blood tested negative, but we saw the proof in his turn-around which begun immediately and was a stark difference in 2 weeks. We put him on whole milk lactaid and that helped a ton - no more massive gas attacks. He began sleeping like never before. Still, he is skinny (although I love that I can no longer meet my fingers around his thigh) and the belly is not hard but is still oversized. We may eliminate dairy and corn, but we are so pleased with the gluten-free changes. We are new, but PM me anytime.

[Rock7902]

Thanks all - we're seeing improvement already - her energy/happiness level has changed markedly! We also switched to Lactaid whole milk which seems to have made a difference. We are wondering if we should cut out cheese now (which sadly she loves). Only been a few weeks but we think she has put on a pound.