can anyone help me?

[mg12061]

I'm feeling a littel overwhelmed right now. Kathleen was diagnosed in July. We went cold turkey NO gluten(that I know of anyway). She showed some really great signs of improvment. BUT now and then her pain returns. First it was just mild now the pst few days she had pain (that made her cry) and a bit of diarhea. I just don't know were to begin now trying to figure out what I'm doing wrong... Is it gluten or is it possibly dairy intolerance(I'v heard this can cause problems too). How do I know what's causeing her pain? Could it be just the process of healing? She starts school in just over a week and I don't want her to go with the possibility of diarhea or pain.
Mary Grace

[Naominjw]

I do know that often the dairy (casein) goes hand-in-hand with the gluten, and the reason in some people is supposed to be with some protein similarity (??). I know that all three of us in my family with a gluten problem had to go off dairy as well. As for the diarrhea and pain... That's what eggs do to me. I tried duck eggs but that does the same thing to me. I have to be very careful also about aspartame and saccharin (ended up in the ER because of saccharin). And then, of course is the problem of hidden gluten. For instance, some chicken is sold with 10% "broth". I called the company. What is the "broth?" Does it have gluten? YES!!! WHAT!??!!! The CHICKEN has GLUTEN in it and they don't have to list it as having GLUTEN!!!??? Yep. All they have is "broth". So now, I am even too scared of ordering plain chicken in a restaurant.

And then there is soy. I am not so sensitive to it, but one of my kids gets bloating, pain, and constipation from it.

And we all had to take steps to heal our gut - probiotics, prebiotics, low refined carbs, anti-yeast stuff.

It does take time to get it all right and heal, but it has been very worth it. I still have issues that my doctor is trying to get to the bottom of, but considering I am older and have other medical problems, I guess I should not be surprised.

[mg12061]

Thanks for your reply... She's still having the diarhea so I talked with her GI doc and he ordered a lot of blood work and a stool sample. I'll let you know how I make out.
Mary Grace

[mg12061]

I forgot that I had posted this and didn't get back here. It's been a long haul and LOTS of testing. Lots of pain, diarhea and constipation. But we finally got to the bottom of it. She was diagnosed in November with Crohn's disease as well as the CElaic disease. Teh GI doc said it's not that unusual to have two autoimune disease like this. She's been taking ASacol since November and it's helped to lessen the cronic inflamation. She also has a motility issue with her intestines either from the crohn's, Down syndrome or the strokes. Her intestines do not moce the stools through ehr bowels wich makes her constipated and causes diarhea. She's taking Miralax daily and ExLax 3 times a week. Thsi seems to be helping. Many more good days than bad. I hated all the testing but I'm glad the Dr. didn't just amke guesses and we actually got a diagnosis and treatment plan.
Mary G.

[Mari]

That is good news, MG. I am glad that your MD was helpful.

[mg12061]

Gosh here we are April 2012 and she's still not feeling well. she had another colonoscopy and her Crohn's and celiac seem to be under control pretty well but she still is not emptying ehr bowles. she's gotten backed up a couple times (seen on Xrays) and tried to "clean out with Miralax and even tried Magnesium citrate (the latter not only did not work it cuased a lot of pain, she cried for days). At this point we took her to the ER they saw that the entire right side of her intestines were still full of stools(even after the bottle of MC). they admitted her and administered Golytly through a nose tube. This cleaned her out. It appears that she has a motility issue and is not emptying her intestines completely on her own. We switched to Dulcolax every other day along with the Miralax daily. That was 3 weeks ago and she's been going but not a lot and very loose. She's jsut starting to get some pain here and there. I hope it's not getting backed up again. She's been reffered by our GI Doc to Boston Children's Hospital. I've been waiting 3 weeks for an appointment to get set up so I"m getting very anxiouse. I want so badly to move forward and get ehr feeling well. Thanks for the input.
Mary G