Paging Carrie

Polly · Post by **Polly** » Thu May 01, 2008 8:30 am

Hi Carrie!

I'm wondering if Rick is seeing any improvement yet? We double DQs have to stick together.....because of our multiple intolerances (MIs), it takes much longer for us to improve. I was the first MI here on the Board and it was so lonely, with everyone else getting better rather quickly just by eliminating only gluten or gluten/casein. For a long time I was the only one in this boat. And then along came Gloria (I couldn't believe it when she also reacted negatively to Pepto Bismol as I had!) and Rick. Also, a big thanks to Tex for alerting us to the fact that double DQs had commonalities. Not that I would wish these genes on anyone, but it's so true that misery loves company. Plus we now have the opportunity to travel this road together and help each other out with ideas, menus, etc.

Love,

Polly

P.S. BTW, do Gloria/Rick have LC or CC? I have LC.

Post by **tex** » Thu May 01, 2008 8:43 am

Polly,

Polly wrote:P.S. BTW, do Gloria/Rick have LC or CC? I have LC.

Great insight! You may have discovered yet another characteristic that Double DQ1's share. I checked Gloria's first post, and she does indeed have LC. Hmmmmmmmm.

Love,
Tex

crranch · Post by **crranch** » Thu May 01, 2008 9:30 am

Thanks for the concern about Rick's progress, I wish I could report good news, but there isn't any. With 2 months of entocort and almost 1 month of pred on top of that, Rick still hasn't seen any improvement. We do feel like we are back to square one after finding out that his smokeless tobacco had soy and other scary things in it, and that our coffee beans were most likely cross contaminated with corn since they came from brazil. So today is Rick's first day with a nictotine patch ( wish him luck, he has dipped since he was 13, but knows that the soy has to go because of enterolab results ) and I have found coffee that hopefully is safe. So we will just keep plugging along until we get it right. We are attemping to be SF,DF,GF,YF,CF and tomato free. I am shocked on a daily basis on what is hidden in our daily lives. Turns out that our toothpaste needed to go also...the company uses corn...

At least with your support, and all the great recipes and help from Dee ( we won't starve

) I know things will get better someday....

Oh, and we are not sure rather Rick has LC or CC, the Medical Deities didn't find anything 4 years ago during the colonoscopy and we can't find a GI doc that will do another one to try and confirm it. So we have to trust enterolab and his symptoms for confirmation....

Hugs,
Carrie

sunny · Post by **sunny** » Thu May 01, 2008 1:41 pm

Gosh! How discouraging ....for you both!! What toothpaste did you eliminate? this is scary!!

crranch · Post by **crranch** » Thu May 01, 2008 3:24 pm

It was synsodyne...and I haven't been able to find another one that doesn't have sorbitol, manitol or one of the other scary additives that effect Rick. So for the time being, he is having to brush his teeth with good ole Arm and Hammer Baking soda........( which according to the celiac forums, is safe, hope their right) Even Toms of Maine brand has thing Rick can't have....major bummer..

C

Post by **tex** » Thu May 01, 2008 5:19 pm

Yes, baking soda is "safe", but it's kind of abrasive. With long-term use, it may be hard on the enamel. That said, there are baking soda based toothpastes on the market, so it probably isn't excessively hard on the enamel, or surely someone would have filed a class action suit by now, in the litigious society that we live in.

Tex

crranch · Post by **crranch** » Thu May 01, 2008 6:29 pm

True......I figure that it most not be to bad on the teeth, my Mom grew up using it instead of toothpaste and at 67, still has teeth like a pit bull...

C

Matthew · Post by **Matthew** » Thu May 01, 2008 8:48 pm

Carrie

Just a brief thought about this comment-

“We do feel like we are back to square one after finding out that his smokeless tobacco had soy and other scary things in it,”

Many of us MI’s have problems with nightshades. For me just a scary as soy. LOL

The nightshade family includes potato, tomato, egg plant, capsicum peppers and tobacco among others .

I found early on in my recovery that I had to eliminate the nightshades. In fact still do. Knowing how I react to the other nightshades I can only imagine that those of us that react would also react to smokeless tobacco. No matter what other additives. The addition of soy would be a double whamy for me .

I hope this helps.

To you continued recovery.

Love

Matthew

crranch · Post by **crranch** » Thu May 01, 2008 9:48 pm

Thanks for the input Sweetheart, we have taken out tomatos, and if things don't get better for Rick, once the effects of tobacco withdrawl are over, the rest of the nightshades maybe on the endangered list as well. I agree with you about the double whammy, considering that the lovely FDA allows for smokeless tobacco to have any of 521 additives in it, that the company does not have to disclose, God knows what else is lurking in it. But now that Rick is on the road to leaving that addiction behind, we will look ahead to what other adjustments we need to make in order to get him on the road to remission.......

Hugs,
Carrie

MaggieRedwings · Post by **MaggieRedwings** » Fri May 02, 2008 5:57 am

AS an MI nightshades are terrible for me with the exception of potatoes. Peppers and eggplant are the worse.

It is such a trial whittling down the triggers but you will get there.

Love, Maggie

crranch · Post by **crranch** » Fri May 02, 2008 9:52 am

Thanks Maggie,

We know it will come at some point.......just wish we could hurry it along, patience is not a trait with either Rick or I.

Hugs,
Carrie

mle_ii · Post by **mle_ii** » Fri May 02, 2008 4:31 pm

Matthew wrote:Carrie

Just a brief thought about this comment-

“We do feel like we are back to square one after finding out that his smokeless tobacco had soy and other scary things in it,”

Many of us MI’s have problems with nightshades. For me just a scary as soy. LOL

The nightshade family includes potato, tomato, egg plant, capsicum peppers and tobacco among others .

I found early on in my recovery that I had to eliminate the nightshades. In fact still do. Knowing how I react to the other nightshades I can only imagine that those of us that react would also react to smokeless tobacco. No matter what other additives. The addition of soy would be a double whamy for me .

I hope this helps.

To you continued recovery.

Love

Matthew

Hey Matthew, what were your symptoms when consuming nightshades?

sunny · Post by **sunny** » Fri May 02, 2008 6:21 pm

Yes, Michael....i'm curious too!!

Gloria · Post by **Gloria** » Sat May 03, 2008 7:37 am

I'm so sorry that Rick isn't having any improvement. You both sound like real troupers, persevering despite not having any measurable success.

Hopefully you're onto something with the tobacco. I can't imagine having to quit a tobacco habit and forsaking so many foods at the same time. Either one is difficult enough, but both - too cruel. I wish you all the luck in the world.

Gloria

crranch · Post by **crranch** » Sat May 03, 2008 8:15 am

Thanks for all the support guys......Rick is on day 3 of no tobacco and aside form the fact that he had to give up the nicotine patches ( he was allergic to them, bad rash and burning everytime he put one on ), he is doing great.

I am curious too, what were your symptoms when consuming nightshades Mathew? We took tomatos out since Rick is a double DQ1 and the other people here with that profile can't seem to consume them........just wondered

Hugs,
Carrie