Help please, new to all of this

Reggie · Post by **Reggie** » Mon Feb 25, 2008 5:27 pm

I use cholestyramine granules and I do think they helped. I still go straight back to them at the first sign of trouble. I took them immediately before eating 3 times a day. I guess I subscribe to the theory that my bile gets some kind of toxic irritant in it and needs recycling once in a while. Of course, it's also quite possible I was just getting better on my own by the time I started taking it. One human does not make for good statistical analysis!

I'm also off gluten and dairy.

I was initially diagnosed as IBS, of course, then LC, and recently a very good GI doc suggested that I may have both.

I haven't had serious diarrhea for months now (knock on wood!).

crranch · Post by **crranch** » Mon Feb 25, 2008 5:40 pm

Thanks for letting me know, I'm encourgaged that you have been symptom free for so long. Gives me hope that someday we will have a handle on all of this.

Carrie

crranch · Post by **crranch** » Tue Feb 26, 2008 9:59 pm

Just had to tell someone who would appreciate my excitement....Rick's Dr. just emailed us and she approved his prescription for Entocort....YIPEE!!! Now we are just waiting for the Enterolab results, and keeping good thoughts.

Carrie

Post by **tex** » Tue Feb 26, 2008 10:14 pm

Just curious - did you tell his doctor that you suspect MC, or just ask for Entocort to treat IBS?

Tex

crranch · Post by **crranch** » Tue Feb 26, 2008 10:26 pm

I sent her links to the latest studies on MC, including the tie in with NSAIDs, told her of realizing that his issues all started after massive use of NSAID's back in 1996. Then I added the mayo clinic study of treatment options for MC.And just for good measure, added links to the general sites about MC, in case she had not heard of it....and the misdiagnosis of MC as IBS and the false negative reports of colonscopy biospy... Dr. Laura knows how much time I have spent over the years doing research into possible causes of Rick's problems, so I figured she would go for, which she did.

crranch · Post by **crranch** » Tue Feb 26, 2008 10:34 pm

Forgot to add, she also knew of Enterolab, and had no problems with us trying them, so I wonder if she suspected MC with Rick also, giving the fact that she didn't come back with any questions about us thinking that he was misdiagnosed as IBS by so many other Dr's, including herself...

Post by **tex** » Tue Feb 26, 2008 10:37 pm

Well I'll be darn! She definitely must have a lot of respect for you, and your research capabilities, because a lot of doctors would have just puffed up and became indignant that a patient, (or a patient's spouse), would presume to second guess a diagnosis.

Congratulations.

Tex

crranch · Post by **crranch** » Tue Feb 26, 2008 10:47 pm

Thanks Sweetheart, I owe it all to you and this wonderful group of friends that I stumbled onto last week...

She is a great Dr, who really cares about her patients, and she knows of my " Web Witch" status in the whole family when it comes to research, since we all use her as our family doc. Every member of our clan has used my research skills at one time or another..... If you ever need something tracked down, just let me know, I seem to have a gift for finding obscure facts. My personal opinion is that it has to do with a little OCD, I get on a search like a bloodhound, and forget to do anything else....

C

crranch · Post by **crranch** » Fri Mar 21, 2008 11:41 am

FYI...Here is what they said....they also said that he doesn't have active UC or Crohns, but didn't completely rule out MC....am I reading this correctly? He has issues with Gluten, Milk, Soy, but he is okay with eggs and yeast???

Carrie

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA 98 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 65 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 283 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 69 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0603

HLA-DQB1 Molecular analysis, Allele 2 0604

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal anti-ovalbumin (chicken egg) IgA antibody 9 Units (Normal Range <10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 7 Units (Normal Range <10 Units)

Fecal Anti-Soy IgA 19 Units (Normal Range <10 Units)

Post by **tex** » Fri Mar 21, 2008 1:08 pm

Hi Carrie,

I would have to agree that you have interpreted the findings correctly. I see that Rick is now a new member of the "Double DQ 1" Club. Wow! His genetic results do indeed conform to the "theory" that all individuals with double DQ 1 genes have multiple intolerances.

Based on the test results, (and assuming that he has the typical symptoms of MC), I would have to say that the probability is extremely high that he has MC. The fact that he does not have any celiac genes, doesn't guarantee that he cannot have celiac sprue, but it definitely makes that possibility highly unlikely.

Thanks for posting that information - we learn a lot from sharing information of that type. Would you or Rick mind if I add those gene test results to our compiled list?

Tex

crranch · Post by **crranch** » Fri Mar 21, 2008 3:21 pm

With the parade of Dr's diagnosing Rick with severe D-IBS for almost 10 years now, we are just thrilled to finally have a direction to go for Rick other than the answer of all the Dr's to " increase your fiber and you will be fine, or there isn't anything else to do, just live with it." I would love to send these results to every GI doc to disprove their deity complex, but I know it would not deflate their little swollen heads....

At least our current doc will find these interesting, I'm getting ready to email them to her today.

We don't mind at all if you would like to use the results, Rick and I owe you all greatly for heading us in the right direction to finally try to figure out this mystery. We will now be going on the GF,DF,SF lifestyle and see if that will help with his symptoms...crossing all fingers and toes that it does....

Carrie

crranch · Post by **crranch** » Sat Mar 22, 2008 10:41 am

Help kids.......my head is going to explode. I'm reading on all the things that milk products can be listed as to remove them from Rick's diet. Does anyone know of a website that list them all? So that I don't miss anything while cleaning out the fridge and pantry.... I already have taken gluten and soy out, but fishing out the hidden milk is sending me over the edge today....

Carrie

harvest_table · Post by **harvest_table** » Sat Mar 22, 2008 1:43 pm

Hi Carrie,

This site might help you, check out the dairy ingredient list, hidden diary and decoding labels.

http://www.godairyfree.org/Table/Food-t ... abel-Info/

I know, it can be overwhelming. Dairy is like gluten, in so many products one wouldn't expect. Hang in there and hi to Rick!

Love,
Joanna

Post by **tex** » Sat Mar 22, 2008 3:04 pm

Hi Carrie,

Have you checked out Jean's lists? They're some of the best around:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=6

Tex

crranch · Post by **crranch** » Sat Mar 22, 2008 4:12 pm

Thanks.......I will check them out right now. Just came from a hour long "reading safari" at the local grocery store. I remember trying to take all the soy of out our diet, and this ranks right up there as far as sending me right over the edge. But I did find some very good GF,SF,DF products that will at least start us down the right path. Now armed with these list, I can expand out from there.

One concern, I bought more of the unsweetened bakers chocolate to make Dee's recipe for bark and it says that it was processed in a plant that also processes milk products. Do you think I should give up using it and order a safer alternative from online?

Carrie

Thanks again, you friends are all I have to lean on right now. Most of our family is very supportive, but clueless.They want to know what they can make him...and all I want to say is PLEASE DON"T EVEN TRY....

MICROSCOPIC COLITIS SUPPORT

Help please, new to all of this

Got the Enterolab results....