Flare While on Budesonide Extended Taper

[famichd0]

Hello All:

I have been on the extended taper of Budesonide since mid-April. This is my 3rd go 'round on Budesonide but first on the extended taper:
- 9 mg/day for 32 days
- 6 mg/day for 22 days
- 3 mg/day for 28 days
- 3 mg/every other day for 28 days
- 3 mg / every 3rd day for last 7 days

Things had been good during this time but the diarrhea has returned in the last couple days, along with gassiness and abdominal discomfort. My question is: Should I restart the 9 mg dose or return to 3 mg / day? Also, based on diet I list below, what potentially could be causing the flare?

The 9 and 6 mg doses were a little shorter than planned as I went to get checked at Cleveland Clinic and they performed a colonoscopy and endoscopy in mid-June. They needed me to get down to the 3 mg / day dosage before the procedure, which I did one week prior to being scoped.

Numerous biospies of Duodenum, Duodenal bulb, Stomach, ileum, Right and Left Colon reported no evidence of celiac, h pylori or microscopic colitis. (Note: I was originally diagnosed with LC in 10/2020; WD started in 6/2019).

I have been on a limited diet primarily consisting of chicken, venison, lamb, elk, boar's head simplicity deli turkey beast, bone broth, occasional grilled salmon or shrimp, 1 banana / day, sweet potato, a couple safe veggies (zucchini, squash, carrots), roasted in olive oil (or steamed), decaf tea with canned coconut milk and dash of coconut sugar (couple times per wk), 1 tbsp sunbutter / day, water with Lyte balance electrolytes added, terra vegetable chips. This diet is based on the Enterolab results received on 4/26/21. I have been on this diet since late March when WD returned (2 wks after finishing budesonide 2nd time) after being GF, DF, egg free and mostly soy free.

I also use topical magnesium oil, multivitamin patch (PatchMD), 4000 iu D3 capsule, 5000 iu B12 sublingual tablet and Centrum Energy multivitamin.

Any advice would be GREATLY appreciated.

Dave

[tex]

Hi Dave,

Apparently something in your diet is still causing a problem.if going back to 3 mg per day doesn't show benefits within a few days, you'll probably need to go to the 9 mg dose for a while.

You're trying to recover using a diet with too many ingredients — that makes it very tough to pinpoint possible problem foods. Possible suspects include chicken, bone broth (if it's not homemade) salmon, olive oil (if it's not on the safe list), decaf tea (if it has any additives), terra vegetable chips (depending on whether they contain any soy, or are cooked in soy oil), and Centrum Energy multivitamin.

Tex

[famichd0]

Thank you Tex. This is so very much appreciated.

- I actually had stopped taking the Centrum multivitamin back in April...had that on the list in error. ...Should have had 400 mg Magnesium Glycinate (KAL brand) listed instead
- Question: Enterolab results from April had listed chicken as the one food having no significant immunological activity. Could that possibly have changed by now?
- Question: As far as cutting down the list of ingredients, should I cut down on the various kind of meats as well? Of the meats listed, I was eating primarily grilled chicken or lamb for dinner; alternating daily. Lunches have typically been lamb burger, elk burger or turkey burger on the grill, with sweet or red potatoes
- The biopsies in June showed no evidence of microscopic colitis. Could the LC have returned so quickly; even on the tapered Budesonide?
- The chicken bone broth has been either homemade or Imagine brand. I've been cooking in an Instant Pot with chicken, zucchini, squash and carrots; Freezing it and having that for breakfast each morning.
- Olive oil brand is Pompeian EVOO - Smooth, which is on the safe list
- I will cut out the salmon/shrimp (which was only about once a month)
- The decaf tea is Tetley black tea and lists no additives
- The Terra Vegetable Chips contain root vegetables (sweet potato, batata, taro, parsnip), expeller pressed canola oil and/or safflower oil and/or sunflower oil, sea salt, beet juice concentrate
- All vegetables are peeled (no skin) and well cooked (grilled, roasted or microwaved).


Enterolab April 2021 - Food sensitivity section:

Food to which there was no significant immunological reactivity:
- Chicken
Food to which there was some immunological reactivity (1+):
- Beef
- Pork
- White potato
Food to which there was moderate immunological reactivity (2+):
- Rice
- Corn
- Tuna
- Walnut
- Cashew
Food to which there was significant and/or the most immunological reactivity (3+):
- Oat
- Almond

[tex]

A few of us would get diarrhea from taking 400 mg of oral magnesium glycinate per day, especially if they didn't carefully space it out in evenly divided doses during the day, preferably with meals, or snacks. Magnesium glycinate is by far the safest form, but while we're still recovering, some of us can't tolerate any oral magnesium supplement.

If EnteroLab showed chicken to be safe, then it shouldn't cause any problems, unless you have histamine issues. In that event, Turkey is safer. Normally, it takes several years to develop a new food sensitivity, but I suppose anything is possible.

Most wild or wild type meats are quite safe, so except for bison, which usually contain domestic cattle DNA these days, wild meats are virtually never a problem (for MC patients), so variety in wild meat types should be okay.

When were you diagnosed? It takes 2 to 5 years for the intestines to completely heal from the damage caused by gluten, and realistically, most members here haven't been able to return to normal cellular histology before about 10 years after first adopting a healing diet. Kids can heal in less than a year, but the older we get, the longer it takes an adult's intestines to heal.

Based on your description, it appears that you're currently doing everything right. So my next question is, How long have you been on that recovery diet? It takes most of us 3 to 6 months to get the inflammation under control, and begin to see signs of improvement.

Tex

[famichd0]

Thank you Tex. Here are the answers to the questions you had and some additional questions I had:

For the oral magnesium 400 mg, I take 200 mg in the morning w/breakfast and 200 mg just before bed.

Thanks for the info about the chicken, turkey and game meats. With regard to histamine issues, what is the best way to determine if histamine issues exist? If they do exist, would taking an antihistamine help or should I keep the ingredients/supplements to a minimum for now?

When were you diagnosed?: I was diagnosed in October 2020 (via biopsy during colonoscopy locally in Buffalo, NY) but have had the WD diarrhea since June 2019; I was originally told it appeared to be SIBO. The Gastro Dr. PA at that time never advised any significant diet changes (I'm no longer with them). As mentioned in my original post, the colonoscopy and endoscopy biopsies at Cleveland Clinic in June 2021 showed no evidence of microscopic colitis.

How long have you been on that recovery diet?: I have been GF, DF and egg free since the end of January. After receiving the Enterolab results on 4/26/21, I also eliminated soy, along with the 1+, 2+ and 3+ foods.

Question: When eliminating a food(s) that triggers a reaction, how soon would our BM's show signs of improvement?

Final Question: About 5 and 1/2 wks ago, I did see a natural consultant who used acupressure points to identify digestive/intestinal issues. He had me start taking Oregonal p73, Coptis Root tincture, Holy Basil tincture, and ION Gut Health. With return of WD, should I discontinue these as potential triggers?

The last couple days have been very, very discouraging especially after the biopsies at Cleveland Clinic in June came back clear of LC.

[tex]

To begin with, if you have a problem with high histamine foods, your nose will run, and/or your eyes will water, and/or you'll have throat congestion, and/or a rash, or some other histamine-associated symptoms within a few minutes after you eat a high histamine food, such as an overripe banana, or a fish that was stored in the refrigerator too long, for example.

But we have a dilemma here. The diagnostic criteria for microscopic colitis are so specific, that I can't visualize any way that a competent pathologist could diagnose microscopic colitis where it does not exist. Many pathologists have failed to diagnose MC, despite the fact that the diagnostic markers were as plain as the nose on your face, but it's virtually never diagnosed when it does not exist.

Therefore, I don't see how the Cleveland clinic could not identify MC, if you have it, providing that they took biopsies from the proper sites. MC does not disappear in a few months to a year (at least I've never heard of that, and it certainly doesn't disappear when the symptoms still remain) — it's a lifetime diagnosis. If we are able to stop the inflammation by carefully modifying our diet, it's possible for the cells in the lining of our colon to eventually heal and return to normal histology, but that takes years, not months. And the other issue is, "If you don't have MC then what's causing your symptoms?" I really thought the Cleveland Clinic doctors knew what they were doing, but I'm beginning to wonder, now.

But to get back to your treatment, if you've been on a meticulous, gluten-free diet since January, and you haven't had any traces of gluten slip into your diet regularly since then, you should be in remission by now, or you should be very, very close to remission. The reason it can take so long to get the gluten (anti-gliadin) antibodies out of our systems is because anti-gliadin antibodies have a 120 day half-life, whereas the half-life of the anti-bodies for most food-sensitivities is in the 5 to 6 day range.

I know nothing about the supplement your naturopath advised you to take. I only know that when trying to recover from MC, less is more, and the fewer supplements of that sort that we take, the sooner we will normally recover. Over the years, many, many MC patients have had their recoveries aborted because of some supplement that some Dr. or someone else, recommended. I don't ever recall seeing a post here by someone who was bragging on how well some herb, or some other naturopathic supplement miraculously resolved all their symptoms.

There are no magic shortcuts in the successful treatment of MC. It's a tough road to travel, requiring dedication and persistence. Our road to recovery is often full of potholes, and detours, but there are never any shortcuts — all we can do is tough it out, and do what we have to do, until we reach our goal. Sometimes it takes extraordinary efforts to track down the last issue that is preventing us from reaching remission, but if we're dedicated, and we keep searching, eventually we'll find our solution. it's out there somewhere, in every case, but finding it can prove to be a challenging task, for some of us.

Tex

[famichd0]

Thank you Tex. You have definitely given me a lot to think about and look into; Especially the Cleveland Clinic pathology.