HELP! I literally have no "safe" protein left!

[Fish2575]

I am going to try to make this short and sweet (though it seems so long and arduous) I was diagnosed in November 2011 (lymphocytic). I was already gluten, dairy, and soy free for 6 month for gluten and 2 years the others.

Went on 9 mg Entocort, did the Enterolab tests and deleted the trigger foods-eggs, yeast, chicken, nuts, corn. I never felt good with beef though it came back negative. I did well on Entocort to start out, and began to taper after a month. It has been downhill ever since.

I went back up to 9 mg of Entocort, but it didn't help. Doc started me on Lialda, maybe it helped a little. I ate duck and buffalo. I reacted to the Lialda, stopped it, got a little better, then not so much.

GAPS and SCD diet-made me feel better. Still diarrhea.

I tested for mast cells, negative. Tested for SIBO, negative. Zyrtec makes a difference, Histame makes a difference. Cromolyn sodium makes a different. Still.....diarrhea!

I went to Hawaii with my family for 3 weeks. The last week of vacation-normans. Came home....diarrhea.

The last few weeks I have been so tired. I had taken out buffalo because it might be related to beef. I took out zucchini because it was high in salicylates. It was just duck. All day....duck soup!

So I brought back rice (low allergen). Now, when I eat duck......diarrhea. I literally have NO idea what to eat. Fish is too high in histamine, I refuse to eat rabbit and can't choke down lamb. The thought of the other "game meats" makes me gag. (not a huge meat eater in the first place).

I have been on 9 mg of Entocort for 18 months! I actually went a couple of days without eating anything-felt great btw. Every morning....diarrhea!

Any thoughts? What could I possibly be missing?

And I can't handle vitamins or supplements. They make everything worse no matter how pure they are.

Thanks in advance! Susie
(I have 4 kids 3-11,one diabetic and two FPIES, it is not possible for me to lower my stress)

[tex]

I went to Hawaii with my family for 3 weeks. The last week of vacation-normans. Came home....diarrhea.

What did you eat/drink while in Hawaii that was different from what you eat/drink at home? And most importantly, what did you not eat/drink while in Hawaii, that you eat/drink at home?

Of course, as you have hinted, reduced stress and/or a temporary change of priorities and change of environment (or a combination of some or all of those changes) might have been the key. Obviously, your body liked something that happened in Hawaii.

You list fish as off limits, but what about crustaceans, mussels. etc. If you're unwilling to eat certain types of meat, you may have to consider uncommon sources of protein, such as krill, or plankton.

Tex

[Fish2575]

Nothing different. That is the weird thing. I took all of my food with me, and had meat delivered from US Wellness meats just as from home!

My throat swells up with shellfish :(

[Leah]

Yours is a very tough case! I feel for you. You might have to consider a round of Prednisone to get things under control. Has your doctor considered this? have you tried the Pepto Bismul protocol yet? It doesn't sound like the Entocort is helping at all.

Stress definitely sounds like it's contributing since you did well in Hawaii. Some do well with acupuncture.

Leah

[gluten]

Hi, I agree with Tex and Leah about the stress issue. Could it be the water. Do you have a water well or city water? Do you have copper pipes in your home? When talking to a water testing company they stated many people have their city water tested. Did you ever have your water tested? A good comprehensive test costs appox. $145. I use Garden of Life products and they have many diferent types of protein powders. Search online "Garden of Life". Jon

[ldubois7]

Oh, Susie, you have so much on your plate! Sorry!

I, too, don't like meat. My Enterolab tests showed reactions to all 11 foods tested.
I have learned to eat lamb twice a week and like it....the chops are pricey, but taste the best. It is good grilled with garlic & olive oil.
I can eat cod/haddock, venison, and turkey, and some bison, but I rotate all of the meats. At least 3 days in between meats.

For lunch I make a smoothie with hemp protein powder. Manitoba 70 has no fiber and no added sugars, its just protein ( 20 mg. in 4 TB!) I can eat avocados so I put a small slice with 1/4 frozen banana, 5 frozen blueberries, coconut mik, ice, & some wilted spinach in the vitamix, It is filling and I have protein without meat!

I eat sunflower or pumpkin seeds on my corn flakes cereal in the morning for protein. There is 9 gr. of protein in 1/4 cup of pumpkin seeds. Be sure to soak your seeds first so they are more digestible.

I've been doing well on this diet for several weeks now!

I have a son (20 now, but diagnosed at 8 yrs. old) with diabetes, and I understand your constant worry and concern. How old is your son?

P.S. You're braver than me...I don't want to try duck. What is it like?

[WhirledPeas]

My heart goes out to you, Susie. I can't imagine dealing with what I go through
and having children especially one with diabetes. Hang in there... You asked about protein sources...

Has anyone tried "Rainbow Light" Vanilla Protein Energizer?

I just bought an individual packet to try. It says it has 14 grams Brown Rice Protein, green foods and fiber. No soy, gluten, dairy or added sugar. Has Allergen Safe Guard seal and VeganGuard seal. It has herbs in it and enzymes. 3 grams of fiber in it which isn't too high which I was happy to see since so many shakes have too much fiber in them for me. When I try it, I'll post here how it tastes. I plan to use vanilla almond milk and a ripe banana in it. Maybe a little apple juice and or honey if it needs some doctoring up.

P.S. From my digestive perspective, duck is too fatty, so if anyone also suffers from GERD or gastritis... think twice about duck. Leaner meats are better for those conditions. I live on turkey and chicken breast and occasionally white fish and shrimp. I buy a package of boneless chicken breasts and a turkey breast weekly to bake and have on hand for meals and sandwiches. Some delis will have freshly roasted turkey which I buy when I don't have time to cook. Better than nitrated ridden deli meat. Along with white or brown rice, hour baked sweet potatoes (until super soft) and applesauce. It's boring, but safe. You can bake apples with a little cinnamon, raisins if you tolerate and a tad of brown sugar and then blend in a food processor to make applesauce that tastes better than Motts All Natural (avoid ones with high fructose corn syrup which taste awful and aren't as "good" for you.) I know you said you can't eat chicken, but maybe more turkey in your diet would help until you heal. You didn't mention which vegetables or fruits that you eat. Maybe the raw, high fiber content is flaring you up? I have more flareups when I've tried to eat high fiber fruits and veggies like raw tomatoes. very well steamed veggies lower in fiber and cooked fruits (stewed) may be easier to digest.

[Fish2575]

Lots of good stuff here... Thank you

To answer a couple of questions..no fruits, no veggies :( That's right, for about two weeks I ate only duck soup (duck done right in the crock pot is super yummy!)

I recently just said "screw it" if I am going to have diarrhea, I might as well have fruits and veggies. I eat raspberries, blueberries, sometimes small amounts of strawberry and pineapple, but they cause a histamine problem

My only veggie right now is butternut squash. I do love my homemade butternut squash soup!

I think I will switch GIs mine wants me on Imuran and won't consider anything else. I may need Imuran, but I am not jumping for it! They don't really want to do prednisone because I have type I diabetes, and it screw with my blood sugar. I do think the budesonide helps. When I wean down on it I am ten times worse....joints, fatigues, hair loss, etc. I am just so frustrated! I want to get to the trigger foods and get rid of them!

Thanks for all of the replies! I will look into all of the things mentioned. I really appreciate the compassion! I am getting downright depressed!

Susie

[WhirledPeas]

Susie,

Have you ever tried to go on the BRAT diet for say three days? Does "D" continue with the same frequency or improve with that? To rest your gut...

Bananas (ripe)
Rice (white) (also could add bland rice crackers)
Applesauce
Tea (black, decaf)
(and lots of filtered water)

Then go to a bland diet for at least 4-7 days like rice, turkey breast, baked apples, boiled potatoes, a porridge of warm white rice with almond milk with a dash of honey, and eventually when your system is calming down adding very soft baked sweet potatoes and or butternut squash that you mentioned. Also, brown rice noodles with Earth Balance margarine and salt. Bland, boring, but healing for me. Also, you could make a good turkey broth and add chunks of the meat along with rice and even puree some butternut squash to give the broth more flavor. I'm the queen of bland. Hope something here helps you or gives you an idea for something new to try.

You are not alone! Hang in there. Come here when you need support. My mantra is "this too shall pass" and "one day at a time". It's rough, but we have to keep looking for ways to find healing and ways to tweak our diet. I'm a newbie here, but it feels good to offer support. Helps me cope with my own challenges...