Confused, Scared --in Process Of Testing

[sarahnaser]

my daughter has been through so much (haven't we all?)the first year of her life she was severely anemic , vomiting , hives diaherrea , rashes the whole nine yard. After testing it was concluded she was born with food allergies to eggs, wheat, chicken,corn, food perservatives and coloring. so we put her on oatmeal, barley, rice, meat and some veggies. life was ok for few months. then the monthly ear infections began. After a year of wait and see we removed her tonsils and adenoids. life is ok for a few months. then the weight loss begins. This time my doctor say don't worry. But after 2 years she has only gained a pound. Her clothing is getting bigger on her instead of tighteradn smaller.

After 2 years i couldn't bear to see her ribs and pelvic bones stick out. So I have just changed doctors and the new doctor suspects celiac. she has the stomach pains but not diaherrea. (she goes twice a day does that fall into diaherrea?) Also now she has become milk intolerant and has really itchy skin. feels like sandpaper.

I have a GI appt in 2 months but what should i do in the meantime. How many months and tests before the results come in? I feel depressed for not changing doctors sooner and impatient and scared of what will happen in the future. if it is celiac my daughter will have to give up more of her favorites. Life is bad enough without eggs , chicken and wheat-----how can i tell her now more stuff has been added to that list!!!

i just need some advice and a hug!!!!!!!

[Guest jhmom]

((((((((((sarahnaser))))))))))))

Hi and welcome to the board, this is a great place for support, advice and to vent!! Do not feel guilty for not changing doctors sooner, we as mothers and fathers do the best we can.

As far as testing for Celiac it can sometimes take a while for a diagnosis. I hate to tell you this but she needs to remain on gluten until the testing is over. I know you must be feeling a lot of emotions right now and understand you not wanting your daughter to have to give up more of her favorite foods but I speak from experience when I say she will adjust to the diet. My daughter was SO picky before the diet and now she can't have her favs either but she has found new favs!!!

I hope you find encouragement here and know that you are not alone

Hang in there

[Kim]

Hi Sarah. Welcome.

Maybe you can take your daughter to the emergency room, go to the GI's office and sit there until they do squeeze you in, or call around to see if you can get your daughter an appointment any sooner.

I would think that the doctor(GI) she is currently scheduled to see, could order her blood tests now (and have the blood drawn at the lab) -- there are 5 tests she needs to have for the complete celiac panel.

If she is celiac, and the villi are pretty flattened - that would explain the lack of tolerance for milk. Once diagnosed, if she goes on a gluten free diet, the villi should heal and she probably will be able to have milk (lactose) again.

Hang in there and be persistent.

Good luck.

Kim.

[ryebaby0]

After 2 years, you don't need to settle for an appointment in 2 months. Keep calling and bugging your pediatrician, or get a nutritionist to advocate for you. We've spent the past 5 weeks in the hospital with our son, who was also down to skin and bones. He tested positive for celiac (serum tests and biopsy both) but there are OTHER things that can be the problem, not JUST celiac, so if you don't get a competent dx soon, you can't solve the problem. Untreated celiac disease --and any potential "partner" disease---is LIFE THREATENING. As far as the cheese--everyone here will tell you that while the villi are damaged, no dairy products (that will be anywhere from 3 weeks to 3 months, I'd opt for the longer) can be digested. Pediatricians, peds GI, all saw my son and advocated waiting a little longer to see if he responded to a gluten-free diet. It took a nutritionist walking down the hall to our peds and DEMANDING he be hospitalized to get him the care he needed, and a dx that included ALL his unsolved problems. Get loud!

Joanna