13 Month Old Being Tested

[AMom2010]

Hi there!

I am brand new to this board and would like some feedback about possible celiac symptoms for my 13 month old little girl.

Last week for 2 days, she had the pale, fatty stool - 4 blowouts a day which alramed the heck out of me!! She has increased gas, which is unusual for her. Her tummy gets very bloated after eating, she looks like a little buddah. She eats a ton of food, often eating nearly as much as I do. She is definately thriving though, she is in the 99th percentile for height, but has been backing of in weight, at her 12 month checkup she was at 40 %tile for weight. I think she is usually in the 60th percentile for weight. At birth she was 8 lbs. 11 oz. Last week when I took her in at 13 months she was 21 lbs. Doctor commented that she was "long and lean". My husband and I have often wondered why she isn't chubby, because she eats so much. She was exclusively breastfed until six months and was introduced to wheat at that time. We stopped bf'ing completly about a month ago.

I took her to the Dr. last Wed. and asked for celiac testing, to which he obliged. The celiac panel came back negative, as did most of her other bloodwork EXCEPT for alkaline phosphatase. That was 7000!!! It is very elevated, I believe normal is considered around 150. Some research I've found suggests this can be elevated due to either vitamin d or calcium malabsorption, not to mention scarier things like cancer. I have also learned that the celiac panel can be unreliable in children under 2.

Tommorrow I am taking her for an abdominal ultrasound and more detailed bloodwork for liver function/enzymes (I think). I also asked him to order a test for vitamin d and calcium levels (he must think I am crazy). He doesn't think she has celiac because she isn't visably malnourished or sick all the time. This is actually the first time I've had to take her to the dr. other than her well visits.

Does anyone have any light to shed on her results? Should I request a referral to a GI for biopsy?? Am I overreacting to nothing??

Thank you so much for reading my post! I am worried sick about her.

Hilary

[divamomma]

My daughter had no visible gastro symptoms either. She never vomited or had diarrhea. She also was never malnourished, little, short or underweight. She was always above average for height and weight. I would ask for a referral to a gastro for a scope/biopsy.

[AMom2010]

We had the ultrasound and more bloodwork this morning. I really hope we get some answers, she hates having a needle stuck in her arm. Today was the 3rd time in a week and a half she has had her blood drawn. She starts to cry as soon as we sit down in that blue chair... Hopefully she won't have to go thru too much more of this.

I am thinking of trying gluten free with her if the ALP is still very elevated as I'm sure the dr will want to continue checking it to monitor it. It couldn't hurt, right?

[AMom2010]

Her liver ultrasound came back normal, thank God! Still waiting on the bloodwork...

She started running a fever Friday afternoon, then had 2 "febrile seizures" Friday night. Scariest moment ever!! Took her to the children's hospital afterward and they couldn't find a reason for her fever, said the seizures were caused by a sudden fever spike and sent us home. On Sunday she started with the big D again, and it continues today. We just got home from her ped and he says she has a virus and the seizures aren't related in any way to the high ALP. He is anxious to get the blood work results back and so am I. He is adament she doesn't have celiac becasue she is growing/thriving, but I just can't rule it out, partly b/c of my own symptoms/faimly history.

I have ataxia and peripherial neuropathy (formally diagnosed by a neurologist); joint pain in both my wrists; defective tooth enamel; headaches (currently giving up caffine to see if they go away); alternating constipation and D for the last 12 years (I am 32); keratosis pliaris. My mom and aunt have MS and my grandmother was always aneimic (sp?).

Her ped said he would more than likely be referring her to a GI once we get the rest of the liver bloodwork back, so I guess I will get to see what his opinion is. I think I'd be more likely to have a biopsy done for myself first, before putting her thru that procedure (pending my results). I hate that she's sick and I truly hope I am wrong and that she is perfectly healthy. Meanwhile, we wait

[stanleymonkey]

OUR 2 1/2 YR OLD DOESNT SEEM MALNOURISHED, SO DOC SAYS NO CELIAC, BUT SHE HAS A HOST OF OTHER SYMPTOMS, ITS CRAZY THAT THEY HAVE TO LOOK HALF STARVED TO DEATH FOR PARENTS TO BE TAKEN SERIOUSLY

[AMom2010]

Today we had an appt with the pedi GI and she mentioned celiac before I could even get it out of my mouth! I am so, so, so happy we were referred to someone whose celiac IQ is so high She recommended that I get tested asap as the DD's bloodwork is most likely unreliable due to her age. She also mentioned a reaction to carbohydrates (inc. fruit, which DD eats a lot of) may also be causing her symptoms. I am to not change anything about her diet and take another stool sample to be analyzed for carbohydrates. We go back in 2 months if there is no change, and hopefully I will have my results in by then.