Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Triggers >> Gluten http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1331580002 Message started by Enko on 03/12/12 at 08:20:02

Title: Gluten
Post by Enko on 03/12/12 at 08:20:02

Hi all!

My hematologist suggested that gluten may be one of my problems. I'll have allergy testing in a week. Anybody else having issues with it?

Title: Re: Gluten
Post by Starflower on 03/12/12 at 15:01:20

I stopped eating gluten in 2008... it causes such awful abdominal pain (and bleeding) that I'm not even tempted to go back.

Heather

Title: Re: Gluten
Post by Enko on 03/13/12 at 02:27:28

Thanks for your reply Starflower!

But, what can you eat now? I imagine that the list is pretty slim..

Title: Re: Gluten
Post by Starflower on 03/13/12 at 13:31:02

At this point, I don't really feel deprived. I'm doing more baking (gluten-free pumpkin bars, chocolate zucchini cake, apple crisp, corn bread...) and eating a LOT more vegetables. I grow a wide variety of fresh herbs in my backyard and use them to make all kinds of yummy dishes. I've also joined a couple of local CSAs for beef, eggs, milk, fruits, and vegetables, which I think is not only healthy but good for the environment and the local economy. It's also really, really tasty.

I do wish travelling was easier (airports are the worst for finding food I can eat!)... and I would love a good croissant ;) Otherwise, no big deal. I've adjusted and so has my family.

Heather

Title: Re: Gluten
Post by Enko on 03/14/12 at 07:54:13

I'm not sure what to think about this:

some time ago I've started (practically unaware that I was doing that!) cutting out food from my diet:

bread (I practically don't eat it anymore, not even dough in pizza)
pasta (I eat it only if I have to)
rice
fish (even the smell makes me feel awful)
meat (especially if it's prepped in grease, ugh!)
milk (it sometimes make me "run for it")

I feel better if I eat veggies and I mean ONLY veggies, only cooked in water and salt, oil ONLY if needed. But of course people around me think that I'm just picky about my food :/

Starflower, do you maybe have some recipes to share? :)

Title: Re: Gluten
Post by Starflower on 03/14/12 at 11:16:52

OK... here are two of my favorites...

Moroccan Lentil Soup
- Dice a whole onion and saute gently in a little oil until the onions are starting to brown

- Add 2-3 cloves of crushed garlic and 1 Tb. of ground cumin, saute for two more minutes

- Add seven cups of liquid (possibilities: a box of tomato soup, a small can of tomato paste, chicken broth, water), add a large bullion cube and/or salt to taste

- Bring the soup to a boil and add one cup of red lentils

- Boil for approximately 20 minutes until the lentils are soft, but not too mushy

- Turn off the heat, add 2-3 handfuls of fresh, washed greens (I've used kale, spinach, mustard greens, mizuna, arugula... I like the sharp-tasting ones best) and let them sit in the soup until wilted

- Enjoy!

Beans and Greens
- Saute 3-4 cloves of garlic in oil until thoroughly browned

- Toss in a bunch of fresh, washed greens (kale, mustard greens, endives, beet greens, arugula... whatever you like) and saute for a few minutes to wilt the leaves

- Add a can of black beans (pre-washed) plus salt and pepper to taste, saute on medium heat for another five minutes until everything is hot

Title: Re: Gluten
Post by Enko on 03/15/12 at 01:24:42

Doing c/p now of that what you've posted :)

Title: Re: Gluten
Post by Deb on 10/24/12 at 14:50:45

I have a lot of dietary restrictions right now and just cut out gluten on top of everything just two weeks ago. The most important things for me to avoid right now are gluten, corn, soy and many high histamine foods. I know dairy causes a burning sensation just above my belly button so it means it may be causing other problems too. But it hasn't gotten bad enough for me to cut it out yet. I was meat-free for about 3 years and when I started cutting out so much other stuff I put meat in once every other day. I dont usually eat it if I had it yesterday.
Plus leftover meat makes my hands tingle. Is that mast cells or just histamine overload?
I heard that the histamine level goes up in meat quickly once it's cooked.
I miss the convenience of sandwiches.
But I have found rice pasta adds a lot to a meal. I had rice, asparagus and salmon today.
I seem to flush no matter what I eat. I had a hand full of nuts a while ago and felt like I had a fever for an hour.
Rice and peas are some of the few food items that don't seem to ever make me react. The smell of oatmeal cooking makes me feel bad.
Sometimes it's not the food but the fact that it was hot when I ate it that seems to be the problem.
These are just some of my random thoughts about my diet right now and I am at a loss really to know how to eat without feeling awful.

Title: Re: Gluten
Post by Joan on 10/24/12 at 20:22:05

All you can do is to test out different medicines (H1 and H2 antihistamines, leukotriene inhibitors, prostaglandin inhibitors, mast cell stabilizers, etc.) and see if you can become more stable.

While you're testing meds, try staying strictly on the low histamine diet and be careful about any other exposures to triggers, too.

Flushing no matter what you eat is common at first. Your GI is very irritated right now, so it's a problem. Leftover meat is one of the worst triggers for some people. Yes, histamine levels in meat go up dramatically after only a few hours from being cooked. I wonder if you could eat gluten-free bread made with rice flour.

All of us have at least some different triggers from others. It's just another one of those quirky things about these disorders.

Title: Re: Gluten
Post by Deb on 10/25/12 at 02:40:54

Thank you! I'm getting very discouraged about the medicines. I'm hoping for a prescription for gastrocrom.
I've asked twice before and the doctor told me maybe next time but he wanted more tests and to try this and that. Plus he's worried about using it with atrophic gastritis. I have Ehlers Danlos and dysautonomia too. So it's kinda complicated. Now I'm getting checked for the P450 gene to see why I'm not metabolizing medicines properly. It looks like I got seratonin syndrome from some meds this summer and I'm just recovering from that. It is the most horrible thing I've ever suffered in my life and I've suffered a lot.
The problem is that the doctor has appointments booked 6 months out. So I need another doctor. But I don't like doctors anyway so I seldom go unless I absolutely have to. I'm a naturopath but my body breaks all the rules. I seem to be able to help anyone but myself. :P

Title: Re: Gluten
Post by KatFromMD on 10/25/12 at 05:37:00

Testing for an allergy to gluten won't actually tell you if it is a problem for you. I have no allergies to anything except hay, but I'm still very sensitive to many things. That's one way MCAS is different from just regular old allergies...you don't have antibodies to something, but you still react to it.

In my case, I'm a vegetarian health food nut, but I slowly discovered that my whole wheat breads were setting me off while white breads weren't. So, as horrified as I am by the idea, I now eat white bread only. The only difference I could find between them was that the wheat breads tend to have extra gluten added. So, I think I can handle some gluten, but not the huge amounts in my healthier foods.

It is very, very hard to figure out which things trigger you and which don't when you're reacting to everything. As hard as it may be, I strongly suggest going to a very restricted, very bland diet in order to get your gut calmed down as much as possible. It is so much easier to then identify when something sets you off, especially if you only try one new thing every day or two. Honestly, though, even when I was only able to eat white rice, zucchini, white bread and butter, I still didn't get my gut fully calmed down until I was on triple the "recommended" doses of H1s and H2s.

Title: Re: Gluten
Post by Futurehope on 10/27/12 at 08:56:40

KatfromMD,
I'm like you. I cannot eat whole wheat products either, even though I do not have an allergy, nor do I have antibodies that gluten intolerant people have. Whole wheat gives me a headache.