What Were Your Child's Symptoms?

[Tajsa]

I'm in the process of getting my daughter diagnosed with celiac. It's really frustrating. We're seeing a GI specialist right now. We had her blood tested and it came back normal. My dd is only 13 months old.

Could you please tell me what were your child symptoms?

How did you find out it was celiac?

What testing was done?

Thanks!

[Worriedtodeath]

Oh BOY! We started at my daughter's 12 month visit. She was a healthy thriving 9 month old who at her 12 month old had not grown or gained weight. We went to 13 months visit and still no change. About then I realized we had mooshy poop - tons of it actually- Blood panel was negative so we went the way of allergies and unknowingly removed all gluten from her diet and she improved greatly. She wasn't on dairy. THen we started again reintroducing the suspect foods dairy, eggs, and wheat. By that time she was 18 months olds and after 60 days of wheat had the blood test again. Numbers were higher but were still not close to a positive. She was on wheat a total of 96 days by the time we did the biopsy with the Gi. He said he saw damage but would wait for the biopsy to agree with that or that he was "trying" too hard to see Celiac (idiot!)

THru all of this her symptoms were lots and lots of mushy stools that slowly went to basically liquid and stayed there. She was non verbal even though she should have talked early given what she was doing at 6 months, tantrum throwing, quick temper, never slept, screamed most of the time, clingy, never interacted with strangers, barely interacted with us, stringy straw like hair, frail/thin arms that you could feel the bones, big round "beer belly" , stick legs, saggy skin on her back above the hips, no butt whatsoever, pale/thin skin, dark circles under the eyes...

According to our drs, she doesn't have celiac. Instead she simply has a mild lactase deficiency with a wheat allergy and casein allergy. Now mind you, her first issues started before she ever had dairy so the "casein allergy" and lactose didn't cause it at 12 months and she can't have rye or barley or oats without having the runs. So now we are being told well obviously she had multiple food allergies. They just happen by some magic draw of the luck to be the same ones that create trouble for Celiac. (can you tell I'm frustrated too??)

We fired our ped gi for being an complete idiot, told our ped that our daghter had Celiac deal with it and shut up and have moved forward with a gluten free, dairy free (we really do have a casein allergy in her, my middle son, and myself) and lite soy diet. The change has been incredible. Everything listed above has disappeared (or greatly improved we've only been on this for 4 months or so) except for the occasional trantrum - she is 2 this month after all -.

It hasn't been easy. None of the drs feel we should be doing this but yet they all agree we couldn't continue the path we were on but wouldn't give us a new path to get on. I compare it to dealing with the 3 stooges. Worse yet, I put all the kids and myself on Gluten-free Casein-free diet and everyone has had a whole host of things disappear and get better. And the most any of the drs can say is well, I wouldn't do this for life.

I swear md stands for mindlessly dumb.

Good luck with your daughter. And at her age, the tests are unrealiable and produce a high level of false negatives. having it all come back negative means nothing.

OH TO END on a good note!! THe ped is of course watching us closely and almost 4 months on this diet, she has gained close to 4 pounds and 2.5 inches in height. This after a year A YEAR of no growth or weight gain. A YEAR people!!! we've had the best weight and height gain in a YEAR after only 4 months. And everyone says the "allergies" shouldn't have caused that type of growth issue but yet.... something caused the issues (DUH Celiac keeps ringing a bell here). I decided to do the diet and have been the only reason my daughter has gotten better and is on the path of recovery.

Good luck!

Stacie

[mmcdaniels]

My son wasn't dx until he was 7 but the problem was evident much earlier. He was a very large baby -- 9lb 9 1/2 oz. At 3 years old, he wore a size 4. At 7 years old he wore a size 5. So basically, there was little growth in 4 years. He had very unusual bowel habits. There was a small bm in every diaper changed for years but almost never a complete bm. I used to think the problem was more diahrea, then I realized it was more constipation/impaction with a little bm leaking around a large mass. Several doctors told me the symptoms I was describing was no big deal. Last year his teacher and I charted all bms in hope of toilet training. This reinforced that yes, there was something wrong. At that time I made specialist appointments myself and finally this specialist (gastroenterologist) was willing to investigate. He was dx in December with Celiac. Now his bms are fairly normal. And he started to grow. He is now in a size 8 (was size 5 in December). He is severely autistic as well with low verbal skills and we haven't mastered the potty thing yet but we're working hard and hope to see progress soon. His teacher & I now believe he can, but he is not yet willing to try.

The testing that was done was a blood test, followed by an endoscopy and a biopsy. I understand these tests are less reliable at your daughter's age but keep pursuing finding out what is going on. I could have saved my son much pain if I didn't wait.