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17 yr. female. Two Dr's disagree with diagnosis.....HELP!
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myownmedicaladvocate posted:
My daughter is 17. She has a history of severe abdominal pain (started at age 15), chronic diarreah. Her pain / diarreah causes her to faint! I go in the bathroom with her once she realizes she may need my help holdin her up on to the toilet. We dont know if she faints from the pain or dehydration, possibly the combination.
She has been seen by a GI speacialist in Seattle and did several tests, blood tests, up and lower GI's, xrays, MRI's, pill camera (capsule study).
She had ulcers on her Ileum, and anus. She had some in her stomach also.
I have a cousin with Celiacs disease and I noticed some shared symptoms, a rash on top of her hands when she eats Gluten, and white mucus floating in her stool.?
she has had three blood workups at differnt times, all are negative for Celiac Disease. However, we put her back on it last year to get more accurate results and she ended up in the ER via an ambulance ride because she fainted and had an extremely faint heart rate. she was very dehydrated. So we are not putting her back on Gluten since it clearly effects what ever else is going on.
Her pediatric GI Speacialist said she could rule out chrones because on her last study her ulcers had moved. She said with Chrones Disease they stay in the same spots and more grow.
She just got a new local Dr. because she is old enough now to see a regular GI Dr. Her new Dr. is wonderful too, but I am so confused because after he read her results of all the tests and studies done by prior Dr. he said he cant rule out Chrones because her ulcers moving indicates that it IS Chrones, opposite from what the other Dr. said.
This is has been almost two years of pain, suffering, and no results. My daughter is a happy, otherwise healthy, and active person. When the pain hits her she is in bed all day (sometimes days) we have resorted to home schooloing so she can still graduate. I dont want her to have to keep missing out on life because of her pain. Please help me find some consistent answers.
What about the pig whipworm article? Is that really safe? what are the possible side effects? Do Dr.'s here in the U.S. use this treatment?
Reply
 
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calgal37 responded:
Consider doing a fecal antibody test and genetic testing to figure out about the gluten side of things. You can read about those at enterolab.com.

There is suggested to be a link between celiac issues and Crohn's so that avenue needs to continue to be explored. Consider doing some testing along the line of Serology 7 which can look for several markers found to be associated with Crohn's disease. You can't rule out the possibility of Crohn's when ulcerations were found in the ileum. Many people with Crohn's can be misdiagnosed for years before all the symptoms show up in full force.

Pigworms are safe as suggested by the studies that have been done, but most docs won't go that route. They'll try standard meds first. But you've got to get a diagnosis established before you even think about pigworms. Put your efforts there.
 
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myownmedicaladvocate replied to calgal37's response:
I already had myself tested and my 14 year old dauhter to see if I have celiac's disease. We both tested negative. I have a cousin who has it, and her children do to so I wanted to rule it out. Anyway, her Dr. said he is 98% confident that gluten has nothing to do with her issues. he sugested that she starts eating it again. She is to scared to. You mentioned that there can be a connection between celiacs and chrones? can you tell me more about that? where can i get info to share with Dr. Thank you so much!
 
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calgal37 replied to myownmedicaladvocate's response:
http://onlinelibrary.wiley.com/doi/10.1097/01.MIB.0000164195.75207.1e/abstract

Try this, small study but relevant. In addition, try using pubmed.com and google scholar to query. I believe celiac.com also has some info on this subject.
 
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YEASTIMPERFECT responded:
I HAVE HAD A PROBLEM WITH DIARRHEA FOR ABOUT 100 DAYS AND A GOOD ESTIMATE IS THAT I HAVE HAD ABOUT 70 EPISODES. SOMETIMES I HAVE PAIN WITH SOMETHING LIKE KNIVES SLICING MY INSIDES MOSTLY IN MY LOWER ABDOMEN. I HAVE MUCUS IN MY STOOL AND EVERYTHING GOES BLACK AS I SIT ON THE COMMODE. I GO REALLY FAINT.

IT HAS BEEN DETERMINED I HAVE YEAST IN THE BOWEL.

FOR THE FAINT FEELING I DRINK ORANGE GATORADE OVER ICE AND THROUGH A STRAW (THE ONLY WAY I CAN STAND IT) A LITTTLE EVERYDAY AND MORE AFTER A BOUT OF DIARRHEA.

I HAVE HANDLES ON MY COMMODE THAT HELP ME UP AND DOWN AND I GET A HARD GRIP ON THEM TO KEEP ME FROM FALLING OFF WHEN I AM FAINT. I'M 72 AND NEED THESE HANDLES TO GET UP AND DOWN ANYWAY.

MY WIFE READ THAT COCONUT MILK KILLS YEAST ON CONTACT AND I LEARNED THAT I NEEDED TO DRINK 14 OZ PER DAY. I HAVE SEEN REMARKABLE RESULTS SO FAR. IT IS NOT EASY TO DETECT YEAST. I HAVE PASSED TWO STOOL TESTS. THERE IS SOMEWHERE IN CALIFORNIA THAT CAN TEST FOR IT. IF I CAN FIND OUT THE NAME I'LL POST IT LATER. YEAST IS SNEAKY AND SOMETIMES YOU THINK YOU HAVE ONE THING WHEN IT COULD BE YEAST.


FOR WHAT IT IS WORTH TO YOU. GOD BLESS YOUR DAUGHTER.


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