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Hi All,
I am on the 10th week of a diet to help my chronic puchitis. I've been on flagyl or cipro constantly for over 3 years now. I did a DNA test with my new gastro which pointed to, not conclusively though, that i would be in the camp for chronic pouchitis after my takedown.

Anyway, i've been working with a nutritionist/dietician on a diet based on food sensitivities. I was tested for 150 ingredients/foods and found i was allergic to only one (ginger, which i love) and more minority reactive to other culprits (corn, sulfites, nitrates). I went down to 20 foods i wasn't reactive to and after a month started introducing more and more foods.

Within a couple of weeks most of my constant symptoms (bloating, low energy and crashes, urgency, frequent bathroom trips) went away. I haven't felt this good consistently for years. It is a problem when i have to travel for work as i need to make sure all my ingredients are prepared the right way. It's hard to go to restaurants and you have to ask a lot of questions which is annoying. But i just moved to LA and that seems normal here. You have to plan ahead for road trips, etc. And when you do have an ingredient you used to eat, it feels like you have a severe hangover for a couple of days which isn't fun. But overall if I stick to the diet it's much better. And i've lost 20 pounds which doesn't hurt. My old gastro said that the more weight you have it taxes autoimmune issues.

I'm still on cipro twice daily but i'm going to taper down and see if i flare up once i get off of it. We'll see. I'll still take probiotics too.

I finally got to ones that are generally off limits (cows milk, wheat) and i'm still doing well.

It sounds like the different diets people are talking about are working well. But i also wanted to let you know about this option that's tailored to your specific food sensitivies. It's thought that if you eat too much of the same food your body starts reacting badly to it so that's why it's different for each person. You should vary your foods - even drinking coffee only once every 3 days or so.

Oh, and this wasn't cheap fyi but for me it's been worth it.
D

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it all went thru the nutritionist. she has a lab send you the vials and you go to your doctor or a lab to get 4-6 tubes of blood drawn. it comes with an dry ice pack and prepaid fedex that sends it back to the testing lab (which is in san diego i think.) but i think she works with folks around the country and does meetings by Skype. She's just moved from LA to Alaska btw.
D
i kind of agree with scott do not think pouchitis in itself related to food sensitivities based on everything i have learned about it..but there are so many factors..maybe it helps you or your sensitivities are bad bacteria feeding ..which might help ...but would not put too much stock in that being the magic bullet..as i have learned from just using diet myself as preventive or control..pouchitis more than just about food we eat..
R
DZAtl,

This sounds very similar to the ELISA/Act Test. Please let me know. Refer below.

Thank You,

Rocket



Hi All,

I have been getting frustrated off and on with my health for a number of years. Pouchitis flare up 4 times a year, but doctors keep saying that diet has nothing to do with it. I am tired of that answer and I for one do not believe it anyway.

I've decided to try a different method. One of the guys I know in my divorce group who is heavy into Nutrition talked about this ELISA/ACT Test. Medical Doctors do not for the most part go this route. Its just trying one drug after another and I am sick of it. We need these doctors to treat us but rather than treat the symptoms, I am interested in treating the problems from the get go since symptoms keep on coming back.

I contacted a doctor who will schedule me for an ELISA/ACT Tests. The web-site is below. The phone number is 800-553-5472.

He has scheduled me to have a stool test done, not like the doctors normally do, but over a period of 3 days. Then in 3 weeks I will have this ELISA/ACT Test done.

THE LRA by ELISA/ACT Tests work 2 ways:
IMMEDIATE RESPONSES: Are called Acute Allergies and usually occur within seconds to 2 hours after you are exposed to the allergen.
DELAYED RESPONSES: To an item can take from 2 hours to 3 weeks after exposure making them hard to detect.

The "Soldiers" of the Immune System are your body's white blood cells called "LYMPHOCYES." The LRA (Lymphocyte Response Assay) by ELISA/ACT Tests identify items that cause your Lymphocytes to react.

The LRA tests measure delayed allergic reactions to over 490 different items. This novel testing technique focuses on identifying the causes of your chronic conditions and repairing and strengthening your immune system.

The Comprehensive LRA by Elisa/ACT Tests measures your reactions to an extensive list of items from the following general categories: Foods, Additives and Preservatives, Food Colorings, Molds, Environmental Chemicals and Toxic Minerals, Medications, Therapeutic Herbs, Danders, Hairs and Feathers.

There is other information on the website. If you contact the 800 number, provide them with your Zip Code and they will provide doctors who schedule these tests in your area.

The only drawback is insurance companies do not cover this. The more problems you medically have, the more items they can test you for.

For me, the other drawback is I have to stop taking VSL # 3 for 3 weeks prior to the test. Must avoid any foods with Gluten, milk products (eggs are OK) incl cheese, butter and so forth.

So I have an appt to have my blood drawn on June 16th. That is the easy part. Its the prep and what you have to do prior that is a challenge.

The results of these tests will tell me which foods to avoid by how my body reacts to it. When I have Pouchitis, everything bothers me.

The doctor even suggested that perhaps I would be a candidate for the Fecal Transplant. He said that is given to me in just a capsule.

Your thoughts are greatly appreciated.

Rocket
R
Wow! That sounds intense. I've been thinking about fecal transplants too.

I agree that this diet isn't a magic bullet. i did try taking my cipro down in half but i started seeing blood for the first time. I just think that i can have consistency with this diet and with the medicine. I do want to start rotating antibiotics though so i don't get used to any single one. I was on flagyl for 3 years but hated not being able to drink alcohol. I have to get my medicines specially compounded too and it costs a ton of money. It's insane how little insurance is covering (i've just moved back to the US after 6 years in the UK).

Still i'm happy to be feeling more consistently better for the first time in years.
D
I have not had a problem mixing alcohol and flagyl but when I did the drinking occurred mid-day and the dosages were taken early morning and late at night. 2 years ago at the Montreal Jazz Festival (which is currently underway and I will be heading up there Thursday to enjoy the finish through this weekend), I got absolutely smashed while taking flagyl and was no worse for it. Although it's very rare that I do something like that. The only reason I got smashed was that some random guys (strangers) from Toronto who I was chatting with started buying me drinks (refills of what I was drinking) and then shots at a bar, and I felt it would be very rude to say no to these free drinks. And things just kind of snowballed when some of my own friends then showed up for a pre-arranged meeting at the bar, and they bought me a new round of drinks as well. So it was sort of an involuntary test but I found out that I can mix flagyl and alcohol.

As suggested by Scott, you can do a test that is a little bit more careful than my drunken experiment.
CTBarrister
Last edited by CTBarrister
After reading journal articles on the topic, I discovered that the alcohol reaction was poorly documented and largely inferred on a chemical similarity to Antibuse. Not everyone is affected.
http://www.ncbi.nlm.nih.gov/m/...20alcohol%20reaction

So, I decided to experiment (at home), and found I had no reaction. So, when I need Flagyl, I do not change my diet. I like my wine with dinner too.

Jan Smiler
Jan Dollar
Jan,

That is great to know. I do not dring that often, but when I do, I drink. I had a graduation for my son this past Sunday with my family and had it at a restaurant. It was BYOB so I bought 5 bottles of red wine.

When I kept on drinking, my daughter said I am having too much. I said I only had 1 glass and she responded, "Yeah, that is the 5th 1 glass of wine you have had."

I thought that was pretty good so I laughed along with my cousins.

Rocket
R

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