Seeking your thoughts, no luck sofar

[EmilyL]

Hi folks! Glad to have this community.

My history: I've had a celiac disease diagnosis (and actually MC diagnosis) since 2020, so I've been off gluten since then and am very aware of cross-contamination (have my own dishes/don't eat out/etc.). Doc and I thought the MC would go away after gluten stopped. I've had watery D for ages and though I saw slight improvement when eliminating gluten, it never left. I'd have undigested fruits/vegetables in my D and constant annoying gurgling. In August, I went to see a new GI since I wanted to continue to work on bettering my GI tract. I did an endoscopy/colonoscopy, which showed my small intestine villi looked healthy but there was still MC. I was doing mediocre before the colonoscopy, but afterwards my D has been ferocious.

Budesonide (9mg>6mg>3mg) for 3 months in August did not work. In December, I found Wayne's book, and eliminated dairy, soy, eggs, and most other foods and got an Enterolab A1+C1 panel (results below). Since December I hadn't been eating any of my +1 foods anyway. I've been eating mostly chicken, pork, rice, potatoes (no skin), and salt for the last 8 weeks. January I started taking D3 (safe ingredients) and magnesium spray daily. I've been preparing the meat low-histamine style as well. I had to eliminate bananas and sweet potatoes which may have been too much fiber of initiated a histamine reaction (in the case of bananas). I've noticed olive oil may bother me in greater amounts. The only change I noticed with restriction to 4 safe foods is little to no gurgling during the day and a slight decrease in D frequency. Pancreatic elastase test showed EPI but I haven't yet tried enzymes. I've been on cholestyramine (Laine's brand) for a week and a half, even ramping up to 8 packets a day the past week and have not noticed a difference. Still having watery (yellowish) D, occasionally urgent and with the need to pee.

Fecal Anti-gliadin 18 units
Fecal Anti-casein 21 Units
Fecal Anti-ovalbumin 26 Units
Fecal Anti-soy 5 Units
Mean Value 11 Antigenic Foods 7 Units
Foods to which there was no significant immunological reactivity: Corn Oat Rice Chicken Pork Almond Walnut White potato
Foods to which there was some immunological reactivity (1+): Tuna Beef Cashew
(+2): None
(+3): None

Looking for your insights/suggestions on what to try next. I still have some budesonide, so I could see if that works now that I've made dietary changes. How long does cholestyramine take to see a change?

Working hard to get better.
Thanks!
Emily

[tex]

You appear to have an unusually tough case to resolve. Your 1+ foods should be safe, because with a score of 7 on your 11 other antigenic foods test, all of those foods are showing a negative test result. You seem to have touched all the bases, considering cholestyramine, histamine, and known common food sensitivities. However, your reaction to sweet potatoes and larger amounts of olive oil might offer a clue that you may be especially sensitive to sugar alcohols. Sweet potatoes contain mannitol, which is known to have a laxative effect, especially for people who are sensitive to it.

Certain brands of olive oil are sometimes diluted (although it's illegal) with cheaper oils, and a popular choice for such dilution is soy oil, because it's a relatively cheap oil. But that should be irrelevant, because even if your olive oil were diluted with soy, your EnteroLab test results showed that you're not sensitive to soy. However, not only sweet potatoes, but asparagus, carrots, and olives contain mannitol. So you're apparently very sensitive to mannitol, and possibly other sugar alcohols. That might offer a clue that will allow you to track down other food issues.

If other sugar alcohols are a problem for your digestive system, please be aware that most fruits and vegetables, including berries, and grapes contain sorbitol. And xylitol can be found in many fruits, vegetables, mushrooms. and some cereals.

I hope this helps.

Tex

[EmilyL]

A good thought, and I'll keep that in mind when one day adding foods back in!

But in the meantime, having been on a strict 4 food diet and supplementing with D3 and Mg for several months with steady D and no change with medications, any ideas for a next step?

[tex]

What are the four foods, and what medications are you taking?
Tex

[EmilyL]

Chicken, pork, white rice, white potato (no skin). Vitamin D3 and Magnesium.
I was taking cholestyramine, but even with 8 packets I was seeing no change (maybe worsening).

[tex]

Unless you're raising your own, and you cook and eat them immediately after slaughtering them, chicken is usually a high histamine food. Instead of eating chicken, turkey is a much better choice, because it's safe for virtually everyone. Many of us react to chicken, separately from the histamine problem. Also, a few of us react to rice, although that's one of the least common sensitivities. I'm guessing that chicken is probably your main problem.

Other safe proteins include lamb, kid goat, duck, goose, pheasant, quail, rabbit, venison, antelope, shrimp, prawns, mussels, clams, lobsters, crabs, and most other shellfish (unless you were allergic to shellfish before you developed MC).

I hope this helps,

Tex