Update at 2 Years

[tex]

Hi Judy,

Welcome to our internet family. It's a shame that your GI doc can't personally experience the joys of living with this non-life-threatening disease for a few months or so, just so he could get his priorities rearranged. There's no question that such an experience would change his opinion of the disease, forever.

As you have found, LC can affect virtually any part of the body, but convincing the average gastroenterologist of that fact, would be a pretty neat trick. Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[Fish2575]

Connie, Sounds great! We come up a lot to take my son to specialists. Susie

[Stanz]

If you're ever looking for a great ND, I have one. PM me next time you're coming up, I'm near Lewis & Clark College, not far from downtown.

[Gloria]

Hi Judy ,

Welcome to the board!

I have other symptoms on and off - mouth sores with certain foods

I have also had mouth sores with certain foods. After getting some advice on this board, I finally realized they were due to a histamine reaction. Once I eliminated most high-histamine foods, they mostly went away.

I have definitely noticed a sensitivity to gluten and dairy, tomatoes, fresh fruit (I am starting to wonder what I CAN eat!) I also have an allergy to all seafood.

Food Intolerances : lactose, gluten, various spices, eggs, chocolate, add to that a seafood allergy...

You have already figured out several intolerances - great job! Tomatoes, seafood, certain spices, eggs, and chocolate are all high-histamine foods. You most certainly have a mast cell problem in addition to MC. I would highly recommend that you research mast cells and a low-histamine diet in addition to going gluten-free and dairy-free. I am getting good results from taking Benadryl, an H1 histamine blocker. Others here have taken Zyrtec or Claritin.

I am starting to wonder what I CAN eat!

Yes, eliminating high-histamine foods does limit your diet. I have only recently begun taking Benadryl and am hoping that it will allow me to add some foods back. Most of us cannot eat fresh fruit while we are healing, but can introduce it slowly once we are healed and in remission.

The good news is - you can get your life back, and we are here to help you.

Gloria

[tex]

Good catch, Gloria. I overlooked those clues. Good for you.

Tex

[Fish2575]

Tex or Gloria, Could you either explain or send me in the direction to learn about the Mast Cell/histamine issue. I am still exploring what my triggers are, but I don't understand this component.

Thanks! Susie

[JudyRN]

Thanks Connie and Gabby for the welcome. This site is a real comfort for me, especially after being around medical folks who are sometimes less than compassionate. It feels horrible to write that. I love my profession, but there has been a real shift toward specialized medicine that has paralyzed the ability to treat the "whole" person - "if it hurts here, go to this Dr., if it's a rash - dermatologist..." LC, CC, MC, is not just a disease effecting GI, but it seems like docs don't want to touch the other symptoms. It is not only frustrating, but it is completely inefficient seeing several doctors and hoping to find just one who will look at things as a whole. It is so helpful to find other "whole" people experiencing similar things and helping ourselves and each other.

[Stanz]

My daughter began Nursing School today, she is a rebel, can only hope that's why they gave her a full ride. I know this must be frustrating for someone who is an insider to a health care "industry" that doesn't think outside the box. You are the exception, you can make a difference in both your own life and others.

[Fish2575]

Connie, What is L-Glutamine?

[Gloria]

Susie,

Here are a few websites about mast cells. Here are a few websites on mastocytosis, mastocytic enterocolitis, and Urticaria. The website on Urticaria has a good list of foods allowed and disallowed on a low-histamine diet.

http://tmsforac.ipower.com/dev/archives/179 - discusses mastocytosis

http://www.patho-bonn.de/documents/0000 ... olitis.pdf - paper on Mastocytic Enterocolitis

http://www.urticaria.thunderworksinc.co ... tamine.htm - Low histamine diet

Some GIs request the biopsies from a colonoscopy to be stained to determine if excess mast cells are present. If you've had a recent colonoscopy, it might still be possible to have your biopsies stained.

Mast cells have been discussed on the board:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14131

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13981

You can do a search for any subject on the board by clicking on the link "Search The Archives of This Discussion Board" in the top section of each page.

Gloria

[tex]

Susie,

I apologize - I read your post this morning, and didn't have time to respond. I intended to come back to it later, and then I forgot all about it. I'm glad to see that Gloria posted some information.

Tex

[Fish2575]

Thank you, Thank you!

[Stanz]

Susie,

Go to this link: http://www.healingwell.com/library/ibs/ ... mpson&id=2

[Lesley]

Judy,
Welcome!

I am an OT with 25 years of experience with doctors AND nurses. I find that only paramedics can look at the whole person, and even then, only some of them dare to do it.

My GI didn't seem to connect mouth sores with my esophagus, my stomach or my colon. Everything was separate, which drove me wild.
The people on this board have been not only helpful and compassionate, but patient, and more than that, knowledgeable. I don't know what I would have done without them.