While this isn't necessarily directly tied to DS, because Celiac Disease & Gluten sensitivities are very common in the DS world, I thought this was a very interesting post. We have had our fair share of researching Celiac Disease & Gluten issues because of Osiyyah's allergies/sensitivities to it. It can definitely cause a lot of problems and this is one example.
The Rieben family adopted a couple girls from Bulgaria a few months ago. One of the girls had what the orphanage doctors called “malabsorption syndrome.” Well, after coming home, running tests & seeing doctors, they found out that their daughter had Celiac Disease (which they suspected) and several nutrient deficiencies, which is all caused by a gut that doesn’t absorb nutrients well, which Celiac Disease causes when it's left untreated. And as this mom writes below, her daughter is so small and has these nutrient deficiencies because of 7 1/2 years of eating gluten.
This is a quote from their blog (linked above) about what they've found with their daughter's "malabsorption syndrome."
Lily was born with cleft lip/palate. Although both had been repaired, we discovered that she still has a hole towards the front of her palate caused by what our pediatrician believes was incomplete/improper healing. She had also been diagnosed with "Malabsorption Syndrome," (at 7.5 years old she came home weighing 28 lbs. and wearing a size 3T), though the orphanage doctors assured us that she had "grown out of it" (don't worry, we didn't believe them!)……….
Highest on our priority list was getting to the bottom of Lily's "malabsorption syndrome," which she had, quite obviously, not "outgrown." In addition to the height and weight discrepancies, Lily had constant loose stool/diarrhea, her abdomen was severely distended and she ate dirt like it was a dessert (this is a condition known as Pica and it is usually a sign of anemia which the orphanage doctors had told us she had struggled with in the past). I requested a referral to a Gastroenterologist (suspecting that she might be suffering from Celiac Disease) and, while we waited for the appointment we ran blood work to test for anemia…………..
Not surprisingly, the labs came back positive. A few days later Lily had her first appointment with the GI who confirmed her diagnosis of severe iron-deficiency anemia and immediately started her on an iron supplement (to give you an idea of how severe her anemia had become, normal hemoglobin levels in children are between 11.5 and 16. Lily's hemoglobin was at 7.4 and steadily falling. Cardiac arrest generally occurs when hemoglobin levels reach 5 or below. Scary, no?). The GI (who also suspected Celiac or Inflammatory Bowel Disease) then ordered the intial tests to check for Celiac or IBD (this included more blood work and a barium swallow with small bowel follow through). Both tests came back elevated and the GI suspected that Lily might have a dual diagnosis of Celiac and Crohn's disease. The only way to know for sure was to perform a colonoscopy and endoscopy (which we now affectionately refer to as the "dual"oscopy) and biopsy both the small and large intestines. We quickly scheduled the procedures knowing that if she was suffering from Celiac disease, it was likely that her hemoglobin levels would continue to fall despite the iron supplements (since her body would be unable to absorb the iron). Again, not surprisingly, but much to our relief, the "dual"oscopies revealed that she did, in fact, have Celiac but, thankfully, not Crohns Disease (or any other IBD).
We immediately started her on a gluten-free diet. We also scheduled an appointment with the hematologist (to monitor and treat her iron-deficiency anemia) and ran more tests to pinpoint any other deficiencies that may have been caused by 7.5 years of gluten consumption. The tests for vitamin deficiencies came back showing a severe vitamin D deficiency (which confirmed our suspicions of early osteoporosis, though we are still waiting for several more tests to determine bone density and how advanced the osteoporosis is). Now, in addition to the iron supplements and gluten-free diet, she is also taking a heavy duty vitamin D supplement.
I am VERY happy to report that, after just a few weeks of following a strict gluten-free diet, my sweet little Lily has finally emerged! At a follow-up with the hematologist last week we learned that Lily's hemoglobin levels are finally at the low end of normal (11) and rising! She is no longer eating dirt. Her belly is no longer distended. She has gained 8 lbs.!! And my tired, withdrawn, sad little girl has transformed into an energetic, giggly, happy and finally healthy little girl! Her transformation is truly, truly AMAZING!!