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mom2

Member Since 05 Apr 2012
Offline Last Active Private
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Topics I've Started

6 Month Follow-Up After Celiac Diagnosis - Still Poor Growth

04 November 2012 - 01:27 PM

My 4 year old daughter received a positive Celiac diagnosis 6 months ago (via TTG blood test and scope/biopsy). We originally went to the Pediatrician because of her severe behavioural and sensitivity issues (she was constantly screaming & unhappy, always tired, needed to be carried, and very small for her age). She originally received two TTG tests (results of 108 and 79).

The past 6 months we have made every effort to ensure she has been on a healthy gluten-free diet. We have found the gluten-free diet is actually great and we don't miss gluten at all. She has been wonderful at explaining she is gluten-free to her friends and teachers at preschool and has made me so proud.

We went for her 6 month follow-up appointment with her pediatric GI last week and were so thrilled to see her TTG results are now within the normal range (11). Other positive changes: she is much happier (still has some tantrums/tactile sensitivity issues, but far fewer and much easier to manage), she is much more active (can run, jump and has much more energy), and she has one bowel movement a day instead of 3-4 (we actually didn't realize this was an issue for her until after she went gluten-free).

The only downside is she hasn't grown as much as we (and the pediatric GI) were hoping. She is still very tiny. Because her family members are average to tall in height (ranging from 50-85 percentile), her pediatric GI thinks her being around the 5th percentile for height doesn't quite fit. He suggested she just might need more time to catch up on her growth as her GI system is healing. He wants us to come back in another 6 months to check her growth and blood work again. He is expecting to see an improvement in her height & weight.

I know many parents here have noticed significant growth improvements within the first few months though. Has anyone experienced growth improvements that took closer to a year?

After I left his office, I got to thinking about an allergy test she had when she was around 1 years old. Because she was so small and always sick at that time, her doctor referred her to an allergist. The allergist said she tested positive (by skin prick) to Casein (milk protein allergy) and that she should be taken off milk. Our family doctor, as well as a pediatrician at our Children's hospital, reviewed the results and told us that it wasn't an unusual thing and that many babies/toddlers are allergic to milk, but outgrow it. Therefore we didn't need to take her off milk (and she still has milk). She doesn't really seem to have any allergy symptoms aside from the fact that she always seems to have a dry, stuffy nose. Anyway, even though it was over 3 years ago, I think I will mention this Casein allergy test result to her GI in case it is still an issue for her and might be affecting her growth? I don't know much about allergies, but she doesn't have any face rashes or bowel issues now, so I'm guessing she might have outgrown it??

Sorry for the long post. Let me know if you have any thoughts on taking longer to grow and/or Casein allergies...

Thank you!

Confused By Bloodwork & Gi's Uncertainty, But Endoscopy Next Week...

05 April 2012 - 11:29 AM

Hi - I don't know much about Celiac disease or testing for Celiac disease, so I'm hoping someone here might be able to shed some light for me or have a similar experience. My almost 4 yr old daughter was referred to a Pediatrician for being highly sensitive and irritable. Aside from being irritable, she has always been unusually small since around 6 months of age (around 3rd-5th percentile for weight/height). The rest of our family is generally thin, but average to tall in height so her growth has always been a concern. She's also pretty clumsy, weak, and tires easily. Other than those things, she is generally healthy (no real gastro issues that I notice). Anyway, the ped was going to refer us to an Occupational Therapist as he was thinking she has Sensory Processing Disorder, but decided to run some bloodwork first.

He checked her iron, thyroid and TTG (for Celiac?). Everything came back fine except her TTG was 108. He said anything under 20 was normal, so he was quite certain she had Celiac just based on that. My husband's grandmother did have Celiac, but I wasn't aware it was hereditary so never mentioned that.

Anyway, the Ped referred us to a Pediatric GI. He re-did her TTG test and it came back at 79. That was maybe 3 or 4 weeks later. Does it seem strange that it would go down by almost 30 points? We didn't have her on any sort of gluten-free diet, although she generally prefers rice, eggs, cheese over gluten foods anyway (but she does eat crackers and pasta a few times a week). As far as I know, the TTG was the only Celiac bloodtest they ran.

We go for an endoscopy/biopsy next week, but the GI didn't really sound convinced that we would definitely be getting a positive diagnosis and that most of the cases they see are TTGs in the 200s.

Is it common to have a semi-high TTG, but a negative biopsy, and then it turns out not to be Celiac?

I have a feeling the biopsy will be negative and then we'll be back to square one.

Thanks for any input!
Mel