Another Newbie - Question about Testing and Many other things.....

[lbirk]

Greetings! I have been scrolling through and trying to absorb as much wisdom as possible from this amazing group - the accumulated knowledge and willingness to help is beyond remarkable. I hope you can direct me in moving forward with my newly diagnosed MC.

A little background - I am 64, active (well, not so much right now) and like everyone else have had challenges along the way (mostly orthopedic in nature, plus relapsing/remitting MS which fortunately has not limited me in any significant way). I eat mainly whole foods, no junk food, very little sugar, gluten or dairy. Mostly fish and vegetables. No known food sensitivities. I was under enormous stress during 2023, as I was the primary care-giver for my partner, who was in hospice at our home, and who ultimately passed in September of 2023. I believe that this stress and sadness was the trigger for MC.

After experiencing many instances of urgent, sometimes explosive WD per day for months, in 11/23 I spoke to my PCP who ordered a GI referral and suggested while waiting I try FODMAP (which did not result in improvement). The GI conducted all manner of tests, bloodwork, SIBO, stool tests, etc, and colonoscopy and endoscopy. I received my diagnosis of MC April of 2024. On April 3, 2024 the GI started me on Budesonide - 3 months, first two at 9mg daily then taper month three, 6mg for 2 weeks and 3mg for last 2 weeks. It worked quickly and I felt good. Her only other advice was to eliminate gluten and limit coffee to one cup and wine to one glass. (By the way, I am in the process of finding a new GI)

I began reading and learning about MC, making food and beverage changes, etc etc

In September of 2024 I had a flare - which I believe was brought on by my mistake in taking Advil instead of Tylenol. The GI ordered another course of Budesonide, in this case 3 months and 9mg, then the taper month. I am now at the end of month 2. It worked quickly, just as it did the first time, but throughout these two months my abdomen has felt odd - not the gurgling that I experienced early on, but sensitive and sometimes mildly painful - with the mild pain being mostly on the left side. Also, I am finding that my appetite is decreasing, and I have to work hard to get in the calories I need with foods that are safe. And I've lost 5 pounds over the last couple of weeks, which is also concerning.

I have been working on implementing the recovery diet from this forum - and I say working on it because I sometimes (often) seem to "get it wrong" - like thinking I am doing great with a grain free breakfast cereal, then realizing that it has sky high fiber. I am not discouraged, just learning. And I hope you can help me move forward with the following issues:

1) Testing - I want to do Enterolab Testing - but am not sure of the timing to due Budesonide. Three months including taper in April-June, and two additional months at 9mg just completing now. Given what I have been reading here, I think I have options to not continue the Budesonide for the next two months, or taper earlier, if there were an issue of Budeonide impacting the testing. Getting the testing done is my priority. I also will get RBC Magnesium and updated vitamin D3. Should I be doing any others? In case it matters, in 12/23 I tested normal for IgA serum and negative for TTG and Gliadin IgA. In the event that my MD is not cooperative with the blood tests, I see that I can get them done independently in an Ulta Lab near me for a reasonable price - do you think this is reliable?

2) Vitamins/Probiotics - My daughter's friend who is an Herbalist and Nutritionist has made suggestions which I agreed with and follow. Can you give me your thoughts . Vital Magnesium (glycinate/malate) One 240mg in am, another at night; Biogenese Vitamin D3/K2 Emulsion, 5000; Jarrrow L-Glutamine, 1000mg upon waking; Digestzymes Pancreatic Enzymes and Betaine HCL, 200mg, 1 with each meal; MEGA Spore Biotic and Restor Flora - one each at night.

3) For Protein and Vegetables I am following the list of each that Tex has included in his excellent advice. But one question - Since duck is safe, are duck eggs also safe? I naively assumed so, and bought 2 dozen (Eggs are among my favorites), but something tells me I may be disappointed.

4) Collagen/Protein Powder - To boost protein intake I have been using hemp protein powder, and to add some variety, I just started pumpkin seed protein. I will likely stick with the pumpkin, since it has only 4 grams fiber for 20g protein, while the hemp has 8g fiber for 15g protein. They each have no other ingredients. Most Collagen peptides are from bovine sources - but there are Collage Peptides made from the scales and skin of cold water fish, including cod. Are these ok for recovery diet?

5) Dairy Substitutes - How about things like unsweetened Coconut Milk yogurt? Its basically Coconut Cream, Coconut milk and rice starch. Less then 2% of: Pectin, Dipotassium Phosphate; Live and Active Cultures; Locust Bean Gum; VItamin D2, Vitamin B12. And another that I love - Violife just like Feta - Coconut Oil, Potato Starch, Glucono Delta Lactone, Vegan source of flavor, Olive extract, Vitamin B12

6) Starch/Grain - I've been struggling with breakfast - I was using a Bob's Mill Cereal with Whole Grain Brown Rice, Corn, Whole Grain Sorghum, Whole Grain Buckwheat, then got worried due to the corn. Next was Wella Grain Free, which has almonds, coconut, flaxseed, Coconut Flour, dates, Chia seeds. If neither of these pass muster I would go to Millet cooked in bone broth with cooked zuchinni and nutritional yeast. As for bread products, I am flummoxed - is there one that is safe for recovery? How about Blue Diamond Almond Net-Thins? Ingredients are Rice Flour, Almonds, potato starch Safflower Oil, Sea Salt, Natural Flavors (includes milk)

7) Fruit - I have 1/2 cup applesauce that I make, granny smith peeled and cooked into sauce for 1.5 hours. Added to this is Marshmallow Root Powder and Slippery Elm Bark Powder, about a teaspoon of each. Is this ok for an every day thing? No other fruit except banana.

Any guidance you can provide is greatly appreciated - WIth many thanks, Lisa B

[lbirk]

Hello again! I have just read the page on the Recovery Diet, Phase One, which answered my questions about bread, and substitute dairy butter and feta. Thank you Gabs-Apg!!!

[tex]

Hi Lisa,

Welcome to the group. Regarding your questions, which haven't been resolved by your reading:

I see that I can get them done independently in an Ulta Lab near me for a reasonable price - do you think this is reliable?

All labs are certified by the state in which they operate, so yes, those results should be reliable.

Regarding question number 2, other than magnesium and vitamin D, the fewer supplements we take while we're trying to recover, the faster we recover, in almost every case.

Some of us can tolerate duck eggs even though we are sensitive to chicken eggs, but not all of us. So it's best to leave experiments like that until after we're in remission, or we might never reach remission.

Regarding question number 4, again, supplements, other than vitamin D and magnesium, are usually counterproductive while we'rer trying to recover.

Again, the more limited our food selections, and the fewer supplements (other than magnesium and vitamin D) we put into our body, the faster we tend to recover. After we recover, then we can worry about balancing our diet, and gaining weight. As long as our MC is active, gaining weight is only a distant dream because of the nutrient malabsorption problem caused by the inflammation.

I hope this helps.

Tex

[lbirk]

Hi Tex - I greatly appreciate your super helpful and super fast response. I am waiting for your books to arrive, another wealth of information from your years of experience that you are sharing!

Can you help me with the timing of the Enterolab testing given the Budosonide. Three months from April-June (first two 9mg then taper) and Two months since October-Today (9mg). Not sure if MD wants a 3rd full month and then taper, or start taper now. I gather that each case is different, what is your recommended strategy?

And one additional question - I drink lots of herbal tea, but would like to settle into the most basic, least inflammatory one for now. It does not matter which, I'd be happy with anything. It seems to me chamomile would fit the bill. Do you have a better suggestion?

Many thanks, and with warm regards, Lisa

[tex]

You can call the lab to verify, if you want, but they don't seem to be concerned unless a patient has been using budesonide for a year or more. It will probably have very little effect on the results. I'm afraid I can't help you with the tea information. I can't drink tea because it causes a histamine problem for me.

Tex

[lbirk]

Hi Tex - Just an update - I did call the lab and speak to Dr. Fine, he said not to worry about the Budesonide, it would not impact test results.

Hope you have a great day! Lisa B