Any Advice Would Be Greatly Appreciated

[Sheas-Mommy]

Hi I'm new to this board. My Daughter Shea just turned 1 Feb 9th and has had many issues over the year and I'm at a loss as to what exactly is wrong with her, and I'm hoping someone has gone through some of these issues that can help. Here is her story.

Shea was born a month premature with Hemolytic Disease of the Newborn and Hemolytic Anemia. Was severely jaundice needed extensive photo therapy for 10 days (ineffective) Gave her IVIG which brought her bilirubin down temporarily. Hospital was feeding her formula to help with the Jaundice (I wanted to breastfeed) Noticed that her stool was still black at 10 days of age. Sent home from hospital and her stools turned Burgundy than black and then orange. Took her to the pediatrician who tested her stool, which was positive for blood. Shea was admitted to the hospital for further testing. They took her in for a colonoscopy and biopsy which showed she had ulcerative colitis due to an allergic reaction to milk and soy. I eliminated milk and soy from my diet and continued to breastfeed. At 3 weeks of age Shea was rushed back to the hospital for a emergency blood transfusion as her hemoglobin was at a critical low.

When Shea was 4 weeks old she was diagnosed with GERD, her bowels were really messed up. Shea would go over a week without a BM and finally go only with help (glycerin or milk of magnesia)

Shea was given Zantac which didn't help so was placed on Prilosec and Extra Strength Maalox (which has milk of magnesia) That combination helped her a lot.

When Shea was 7 months old we started solids, which she had no interest and it was actually a fight to get her to take any. At 8 months we started green beans, which within 1 day she developed a rash to it. We tried the orange veggies which there was no problem. No problem with Rice cereal, oatmeal, but developed a rash head to toe, extremely irritable, gassy, vomiting when she tried mixed cereal which the main ingredient is wheat. Tried the cereal again a week and a half later and again she reacted to it but worse. The pediatrician has now referred her to an allergist and we will be going back to see the G.I. Shea is failing to thrive she is well below the 3rd percentile on the growth chart. She wears 3-6 month clothes and size 1 diapers.

Lately I have noticed that when she eats certain foods she doesn't digest them, ie Cheerios's her BM looks like chewed Cheerios's and smells just like them (sorry for the disgusting description) Also when she eats carrots (tiny cut up pieces) they come out looking the same as they went in. Its like she isn't digesting them at all (color, smell, chunks of carrots)

Has anyone ever experienced any of these things, the doctor has mentioned that it could be celiac disease and she wants me to keep her away from gluten, also I was told often ulcerative colitis and Celiac disease goes hand in hand.

If anyone can offer any advice it would be greatly appreciated as I'm not sure what is wrong with her.

Thank you

[Ursa Major]

I agree with your doctor. It sure sounds like your baby may have celiac disease. Make sure you continue to feed her dairy and soy free, and add gluten-free to that.

Failure to thrive is usually the most obvious symptom of celiac disease in babies and toddlers. Cheerios have gluten in them. The carrots probably come out undigested because your daughter's intestines are in such bad shape that she can't digest them.

Are you still breastfeeding? You will need to eliminate gluten from your diet also if you do. For now, try feeding Shea only breast milk, cooked fruit and well cooked (almost mushy) vegetables. Anything raw might be too hard on her damaged digestive system. If you want to feed her cereal, try cream of buckwheat cereal (from Bob's Red Mill) with rice milk (not Rice Dream, it has barley malt).

By the way, one symptom of celiac disease can be constipation (I would alternate between diarrhea and constipation before the gluten-free diet).

I hope Shea will get well soon!