Celiac For Almost 2 Years - Now, New Health Problems

[elfkin]

My three year old was diagnosed with celiac at around 15 months old. He has been strictly gluten-free for 2 years. He was tested with the blood test, endoscopy, and DNA testing. He was positive on all counts. He drinks rice milk, has limited soy (rotated with VERY scant dairy), and is anaphylactic to nuts. We started seeing bloody streaks some months ago in is his stool. I assumed gluten contamination at first, and checked the house for any gluten sneaking up on us. We cut out dairy completely, although he was only eating it in yogurt and things like that anyway. We continued to see occasional blood streaks, had it cultured by his ped. for infection. It was negative. Then, about two weeks ago, he had alot of blood, almost no stool, just blood. This set off a chain reaction of specialist visits. The allergist said to continue with no dairy and remove soy as well. (Keep in mind, we already limited his soy.) The gastro. doc. wanted to do a colonscopy. He said it could be polyps that should be removed. He mentioned that he didn't think it was colitis, because it usually shows up later - that our son was too young. The endoscopy was yesterday and surprise, they think it is colitis. I am really stressing out here. Celiac and food allergies was bad enough. This is freaking me out. Has anyone else had issues with this? I am so frustrated.

[elfkin]

Are we really the only ones with this complication? I am getting more nervous.

[sarah ruth]

sorry we don't have this problem, it sounds heartbreaking, your poor little dude. Right now I am re-reading Breaking The Vicious Cycle (or my old edition Food and The Gut Reaction) by Elaine Gotschall as motivation to heal up after this past month eating gluten for the bloodtests. Her daughter was diagnosed with colitis at a young age and really wasting away when she was introduced to the specific carbohydrate diet and regained her health. It's a very interesting and informative book, half science half recipes, tying in colitis with celiac disease and other intestinal disorders. Most libraries have it and it's well worth reading and might soothe your nerves a bit. The diet is delicious and nourishing and easy enough to feed kids, though you would have to forgo the almonds if he is anaphylactic. I know I feel great gluten-free, but I feel *healed* when I eat SCD, especially with lots of bone broths and soups. I know you'll find something to help him, best wishes.

[Noel1965]

Hi Elfkin - Firstly, I am sorry to hear about your son's health concerns. It is difficult enough to go through the frustrations of our own health concerns but I know first hand that it is far more difficult when it is your child. I am unsure if I should be telling you about my son's conditions or not - I do not want to cause you undue stress. Until your doctor gives you a diagnosis please try not to fear the worst. However, my son was diagnosed with colitis at 2 years of age. So I guess little guys can get it too. I want to preface my next statement with saying that is has nothing to do with colitis - my son passed away last year at 12 years old (Pneumonia and rsv) and I have since found out that I have celiac disease. I have often wondered if Jordie had it as well (it would explain lots) but I guess I will never know. So I too have wondered about a link between celiac and colitis.

I hope that you did truly want to know if anyone had similar issues. I pray that he does not have colitis as well.....just take one step at a time.......Noel

[carol miller]

Welcome to the message board. If your daughter is going to have a biopsy, she should not be gluten free until after the biopsy. I went gluten free the minute my biopsy was complete, because the GI doctor said he was absolutely sure it was Celiac. You should discuss this with your doctor, if he or she knows anything about Celiac disease. I know this is a difficult decision to watch her suffer while you await a biopsy. When you do start the diet, try Trader Joe's, Whole Foods, Henry's or Wild Oats. All of these places have some gluten free products. Also there are many places on the web where you can order, treats for her. Read the Celiac.com website about what she can eat. Learn to carefully read labels. Try finding a book by Danna Korn on raising a Celiac Kid. There are support groups for parents called R.O.C.K. That is a good place to start also. This is all very confusing, but with a good attitude and a kid who's cooperative you should have a healthier child in a few months. Good luck, Shirley Whitley

[carol miller]

i feel for you my daughter has been in nightly pain for hours almost a year now it interfers with school etc.. it is very difficult to sit up with them and have nothing you can even giv them to help with the pain.

what i wonder and i dont know if anyone out there has an answer is if my daughter has celiac or gluten intolerance how long do you have to be gluten free to see a change we have been on a strict gluten and milk free diet for over 3 weeks and there is no change at all should i be more patient shouldnt i see some change if that i s the problem??

her doctor has done all tests and they are negative for cliac diesese but he thinks gluten intolerance could be the culprit. so frustrated!! if anyone has taken thier chiold off gluten and seen a marked improvment i sure could use the boost

thaks so much

carol miller

[Fimac]

Hang in there you will get there. My 9 year old ds is the celiac here. In December he had endo. and colonoscopy to check for additional problems. G.I. doc was looking for Crohn's or U.C.. The colonoscopy found inflamation in his large bowel but she could not get the scope past it to look for the toral extent of the problem. It bleed very easily, but he claims never to have saw blood in his stool. However his stool is often very dark so I suspect that some was present.

The pathology did not show much. However she did suggest that he was taken off all dairy. (My gut feeling as well) He was lactose free before this so had very limited dairy as he was not able to tolerate even limited amounts of lactose with the aid of the pills.

His remaining abdominal pains resolved them selves within about a month after removing all diary. The colonoscopy was repeated in March. She was still looking for the cause. The finding was the inflammation was resolving and only some white bumps were present. (They were biopsed but will not have the results until May)

She feels that he could still develop other additional problems in the future particularly Crohn's, but at the moment he is diet controled. I suspect he may have another food intolerence but have to tracked it doen yet.

His celiac symptoms started at around 18 months and were not diagnosed until last year. So take it slow. You have the medical profession working with you, which is a big asset.

Fimac