New And Need Help For Daugther

[kbailey]

I AM NEW TO THIS WEBSITE.. AND ACTUALLY THE ONLY MESSAGE POSTING WEBSITE I HAVE BEEN READING. ALL OTHER WEBSITES HAVE BEEN PURELY MEDICAL INFO, SO I AM GRATEFUL FOR THIS!!

I HAVE A 9 YEAR OLD DAUGTHER WHO HAD HAD CRONIC DIARRHEA SINCE SHE WAS 5. I HAVE TAKEN HER TO THE DOCTOR ONE MORE THEN ONE OCCASION FOR IT, AND WAS ALWAYS TOLD SHE DRINKS A LOT OF WATER, OR IT IS SOMETHING SHE IS EATING.. ETC. I HAVE ALSO MENTIONED IT, ALONG WITH HER LOW WEIGHT SHE IS 50 LBS.. AND WILL BE 10 IN OCTOBER) JUST ABOUT EVERYTIME I HAVE TAKEN HER FOR OTHER ISSUES, AND I WAS ALWAYS MADE TO FEEL LIKE I WAS BEING PARANIOD. I WAS VERY SKINNY WHEN I WAS YOUNG TOO, AND THE DOC ALWAYS REFERS BACK TO THAT.. OVER THE LAST 8 MONTHS TO A YEAR HER DIARRHEA HAS GOTTEN PROGRESSIVELY WORSE.. ABOUT 4 TO 5 SOMETIMES 6 TIMES A DAY... EVERY SINGLE DAY. I TOOK HER BACK ABOUT 3 WEEKS AGO AND TOLD THEM I WAS NOT LEAVING UNTIL THEY DID SOMETHING TO TRY TO FIGURE OUT WHAT WAS GOING ON ... SHE IS GETTING OLDER NOW AND IT IS EMBARASSING FOR HER, NOT TO MENTION IT WAS WORRYING ME! THEY ORDERED BLOOD WORK, AND SENT OFF A STOOL SAMPLE FOR PARASITES.. ALL OF WHICH CAME BACK FINE, SO THEY REFERRED HER TO A PEDIATRIC GI DOC. A FEW DAYS AFTER BEING TOLD THE LABS CAME BACK FINE, I WAS GETTING HER READY FOR SCHOOL ONE MORNING. AND SHE SAID SHE FELT SICK TO HER STOMACH (I JUST FIGURED SHE HAD TO GO TO THE BATHROOM.. AS SHE USUALLY DOES), AND THEN SAID SHE COULDN'T SEE... AND FEEL BACK UNCONSCIOUS (SP). HER EYES WERE OPEN AND SHE HAD A TIGHT SMIRK ON HER FACE... I WAS SCREAMING HER NAME AND SHE WAS UNRESPONSIVE.. SHE WAS LIKE THAT FOR ABOUT 10 SECONDS... AND THEN CAME BACK TO. SHE WAS VERY TIRED AFTERWARDS FOR ABOUT AN HOUR OR TWO.. AND THEN WAS BACK TO HER PERKY SELF. WE RUSHED HER TO THE HOSPITAL AS SOON AS IT HAPENED, AND THEY DID A CAT SCAN, WHICH WAS NORMAL. WE ALSO TOOK HER TO A NUEROLOGIST A WEEK LATER ( THAT WAS THE EARLIEST IT COULD BE DONE) FOR AN EEG THAT WAS NORMGAL.THE NEXT MORNING HER DOC DID MORE BLOOD WORK TO CHECK FOR DIABETES, AND AND HER ELECTROLYTES... ALL OF WHICH WERE NORMAL. AFTER HIS HAPPENED... I STARTED RESEARCHING INFO ON THE INTERNET ABOUT STOMACH/INTESTINAL PROBLEMS AND FAINTING/AND OR SEIZURES (SINCE THEY CAN NOT EXACTLY SAY WHICH ONE IT WAS) AND I CAME UP WITH CELIAC. SHE HAS A LOT OF SYMPTOMS OTHER THEN THE DIARHHEA.. MOUTH SORES, LOW WEIGHT, PAIN IN HER CHEST FROM GAS.. ETC. I HAVE READ SEVERAL THINGS ON CALCIUM BUILD UP ( I THINK THAT IS WHAT IT IS) ON THE BRAIN CAUSED BY CELIAC THAT CAUSES SMALL SEIZURES (THE KIND THAT DONT CAUSE THE JERKING).

WE HAD THE APPT WITH THE PEDIATRIC GI DOC 2 DAYS AGO... ONE OF THE FIRST THINGS HE SAID WAS HE WANTED TO TEST HER FOR CELIAC (I HADNT EVEN BROUGHT IT UP YET). WE HAD THE UPPER BOWEL XRAY DONE YESTERDAY (WHERE SHE HAD TO DRINK THE CHALKY STUFF AND THEN THEY DO XRAYS EVERY SO OFTEN) AND THEY CALLED BACK TODAY AND SAID IT SHOWED NO ABNORMALITIES. WE ARE WAITING ON THE BLOOD TEST RESULTS THAT WONT BE BACK UNTIL FIRST OF NEXT WEEK TO SEE IF IT SHOWS THAT SHE HAS CELIAC. MY QUESTION IS THAT I HAVE NOT SEEN ANYWHERE WERE ANYONE HAS POSTED ABOUT HAVING THESE "EPISODES" OF FAINTING/ AND OR SMALL SEIZURES, ALTHOUGH ON THE MEDICAL WEBSITES I SEE THAT IT CAN BE A SIDE EFFECT FROM HAVING CELIAC.

CAN ANYONE SHED SOME LIGHT ON THIS? I AM BESIDE MYSELF WITH WORRY!! I AM WORRIED THAT HER DOC HAS LET THIS GO ON WITHOUT LISTENING TO ME (AND ME FOR NOT BEING PERSISTANT SOONER!)FOR SO LONG THAT IS HAS CAUSED THIS CALCIUM BUILD UP.

THANKS FOR ANY INSIGHT YOU CAN GIVE ME!

[Guest jhmom]

Hi, I am sorry that your daughter is not feeling well. I too have an 8 year old that has had stomach trouble since birth. She had colic as a baby and always cried with pain. I took her to the Ped numerous times only to be told her probs were from not eating veggies and that she needed to eat more fruit! ARG!!!!!

I think it is good that she is seeing a Ped GI and that they ordered the Celiac tests BUT just remember if they come back negative it DOES NOT mean she doesn't have Celiac or gluten sensitivity. It takes time for a disease to show up in the blood.

There are 2 other options for you: You can order a stool panel test from Open Original Shared Link it is more sensitive than the blood and a more accurate way of testing OR you could put her on a gluten-free diet for a couple of weeks / months to see if she shows an improvement.

I do hope she begins to feel better soon, I know all too well how she feels as my daughter does too. I went through all the GI tests all to come back negative and then decided to get tested through Enterolab. I also decided to have my daughter tested so that she would not have to endure all the tests that I did. It was well worth the money

Here is a link I found on seizures and Celiac, I hope it helps....

Epilepsy and Celiac Disease