I am new to celiac disease and new to message boards... so bear with.
Long story: (for short to the point move on to bottom)
I strongly believe that my 3 1/2 year old has celiac disease. He had what you call a "Celiac Crisis" in Oct '03 in which he was hospitalized for 12 days with vomiting and severe abdominal pain, in which they did every test and couldn't pin point the cause and therefore had no treatment other than morphine to control the pain. He would feel better once he was voided (due to enemas or no eating) and the minute he ate (ie. chicken nuggets, hamburger, pancakes... all on the reg. diet doctor prescribed) he would have severe cramping again. Finally nutritionist did a blood test which showed anti-bodies to gliadin, which suggested Celiac's disease. So suggested a endoscopy and biopsy. Meanwhile, they still had him on "reg" diet, so I demanded he be transferred to a children's hospital in the area and he was immediately put on a gluten-free diet. While on the gluten-free diet he was completely fine. The day they sent him home biopsy tests came back indicating no celiac disease.
Minute we got home and resumed "reg." diet which included pancakes, saltine crackers and toast... pain resumed. So, I had a light-bulb moment and thought gluten-free diet=no pain, so resumed gluten-free diet and he got better... GI said on follow up visit, if it works then lets keep it up and he wants to re-scope again this summer to verify. I am petrified to put him back on gluten for any amount of time since when he has had relapses with accidental gluten ingestion, he has had severe cramping and pain. I have chosen to have lab work done at Enterolab to find out... (I know this is a hot topic).
Looking back at his history, it seems obvious that he has been celiac disease from beginning. He had weight and growth problems from 8 months old on (dropped from 90% to 15% by the time he was 15 months old) and doctor referred him to an endocronologist (hormone doctor) to check for hormone deficiencies.. there were none.. so we concluded it he was lactose intolerant which was why he was having diahrea and malabsorption problems. Not once did anyone suggest celiac disease.
Since hearing about it in Oct "03 and going gluten-free we find out my husbands cousin has it on mother's side and that my husbands maternal grandfather had lifelong bouts with stomach pain (undiagnosed celiac disease). I believe my husband has it as well.
Since we think my 3 1/2 year old has celiac disease and I remember him having problems with my breast milk: gassy, explosive bowel movents, mostly green instead of orange, etc.. and I couldn't figure out what it was I was eating. With my oldest son, (non-celiac disease I think) he had orangy stool and only had green stool and was gassy when I ate spicy food or onions etc..) I was so careful with 3 1/2 year old, to eat bland foods, but in hindsight ate alot of gluten, and he still had problems. Now I have a 7 week old who is exhibiting same bowel issues. She is baby #4 and my #1 and #3 children did not have the same issues.
Now since, my 3 1/2 year old did not have weight and growth issues until he was 8 months old, and he was breastfed.. I wonder if gluten goes in the breastmilk and if it does, if it doesn't cause absorption problems as much as when they are eating solids with gluten.
Did anyone else have issues with breatfeeding with celiac disease children and what were celiac disease children's symptoms as babies... in hindsight for some of you...
3boyzmomMember Since 26 Mar 2004
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