Looking For Others That Have Both Celiac And Crohn's Diseases

gluten-no-more · July 5, 2009

I was diagnosed in 2002 but two years later the doctor's realized the Crohn's disease manifest itself as Celiac. Once I got my Crohn's under control (through surgery), I eventually started having problems again. Doctors screened me again and everything was inconclusive. Finally, I was sent to the Mayo Clinic in Rochester and was confirmed as having both Celiac and Crohn's. So, here I am again trying to do the diet but yet, I'm still faced with the original frustrations I had when I was diagnosed the first time... lack of taste, the inability to have a sandwhich because I hate the bread, feeling like an outcast among my friends. Granted, there are two frustrations that are no longer an issue... the dream of having gluten free beer (which I tried last night - yummy) and the lack of local options - our grocery store has a fairly large section of gluten free options. In fact, they went through the entire store and put little tags on everything gluten free.

Also, I'm looking for some viable options for breads and looking for someone to tell me how to make a grilled cheese with gluten free bread.

hannahp57 · July 5, 2009

I dont have chron's though i have been having stomach issues lately and wonder if it could be the cause. tell me more about it and your symptoms please.. it may just be CC for me but its been a week and no progress so im exploring possibilities.

also i have made grilled ham and cheese with gluten free store bought bread and homemade. the store bought does not brown it just becomes crispy so that makes it easier once you figure this out. homemade bread that i used required more butter than what i was used with regular bread...and i also use real butter now instead of margarine so that would have something to do with it. the best thing is to apply a thin layer and let it cook through..if i pick up the bread before the butter is cooked on it i always always mess it up. it gets mushy and wont cook right for some reason

it just takes getting used to! good luck

Oh yeah kinnikinnick and pamela's have wonderful bread mixes. i have used and LOVED both.

gluten-no-more · July 5, 2009

hannahp57 said:
I dont have chron's though i have been having stomach issues lately and wonder if it could be the cause. tell me more about it and your symptoms please.. it may just be CC for me but its been a week and no progress so im exploring possibilities.
also i have made grilled ham and cheese with gluten free store bought bread and homemade. the store bought does not brown it just becomes crispy so that makes it easier once you figure this out. homemade bread that i used required more butter than what i was used with regular bread...and i also use real butter now instead of margarine so that would have something to do with it. the best thing is to apply a thin layer and let it cook through..if i pick up the bread before the butter is cooked on it i always always mess it up. it gets mushy and wont cook right for some reason
it just takes getting used to! good luck

Oh yeah kinnikinnick and pamela's have wonderful bread mixes. i have used and LOVED both.

You'll have to excuse some of the 'grossness' I have to share with you but it's necessary in order to answer your questions. The main symptom is stomach pain. It's not necessarily a cramping pain - although I get that too sometimes. My stomach pain is usually an upper stomach pain. It's piercing and it shoots through my back. You can also describe it as a gnawing feeling. I have diarrhea about 4-5 times a day. Most of the time the diarrhea is a very thin light color - almost mucus like. There have been times where I was passing blood (which always lands me in the ER). In 2002, I had a blockage which felt like waves of pain shooting from my belly button to my groin. I have a high tolerance for pain so when I was screaming out in pain my then fiance knew it was bad. He had to carry me into the ER because I was in such pain that I couldn't walk. I was also very anemic. At your very worst, you start dropping a lot of weight because you are scared to eat.

I know it doesn't help much because both disease have very similar symptoms but I would recommend you ask your doctor for a colonoscopy AND endoscopy. Then have him show you a couple pictures of your intestines from your colonoscopy AND endoscopy along with a photo of intestines inflicted with Crohn's. That may help.

Thanks for the tips on grilled cheese. I'll try it tomorrow night for dinner since my husband is teaching class and can't make it home for dinner.

hannahp57 · July 5, 2009

Thanks for the info and dont worry about grossing me out i've had bad days (weeks) too

my symptoms are not quite so severe..i havent ever passed blood. i have been having breath taking stomach pain in the upper right side but it doesnt spread to my back. it just burns and feels like a knife being twisted around. and D but im not sure about that.. that hasnt been chronic so much. i will be talking to my doctor after i finally get my dentist appointment out of the way.. i was down thirty pounds before diagnosis and my tooth enamel was weakend= two broken teeth in back