I need your help please.

[Catieu]

Hello again,

There's no way I'm improving. On the contrary, I've gotten worse. I don't understand anything. I stopped taking all the supplements, I no longer use problematic cosmetics, and I stopped eating fish. First, I also stopped eating rice and was only eating turkey and potatoes. When I didn't improve, I stopped eating potatoes and went back to rice. Currently, the only thing I'm eating is turkey and rice. Nothing else. I don't understand this worsening. I don't understand why a few weeks ago, when I was eating turkey, fish, rice, and potatoes and taking supplements, I was doing better than now. I can't think of anything else to do. I was thinking that maybe I've caught a virus or intestinal bacteria. Do you think that's possible? When I get any kind of infection, since I can't take conventional antibiotics, I take oregano capsules, which are considered a natural antibiotic. I thought I might take a course of them to see if I improve in case it's a digestive infection. What do you think about that? Can you think of anything else?

Thank you for everything.

A big hug,
Marta

[tex]

When what we're doing isn't working, and we've allowed plenty of time for it to work, it's time to try something else. Back in March, you said you contacted EnteroLab and they no longer do tests in Europe. But that lab has moved to Greece, so they are surely doing tests in Europe, now. It would be nice to know which foods you actually react to, so if I were in your situation, I would call EnteroLab to see if I could order a test kit.

Isn't lamb or cabrito available in Spain? They would provide you with additional sources of protein. It takes a lot of protein to heal. Shellfish are safe, also.

I've noticed that in most cases where MC is refractive to treatment, the cause of diarrhea is bile acid malabsorption (BAM). The newsletter at the following link describes how to use cholestyramine to treat BAM.

https://www.microscopiccolitisfoundatio ... mplate.pdf

But if you plan to order an EnteroLab test kit, it would probably be better to wait until you get the kit and take the sample before changing your diet or beginning a cholestyramine treatment.

Tex

[Catieu]

I spoke with Dr. Fine about getting tested in Greece, but they are still waiting to receive their license. The laboratory is already set up, but they cannot perform the tests yet. He told me it would take about two months. I will contact him again to see if there has been any progress.

Regarding bile acid malabsorption (BAM), I took cholestyramine for months without any improvement. I first took it when I was diagnosed fourteen years ago and again last fall when I stopped taking corticosteroids.

I will replace turkey with goat or lamb, which I can find organically in my country. As for rice and potatoes, should I also change them? What could I substitute them with?

Thank you very much, Tex.

A big hug.

Marta

[suzieq]

Hi Marta,

My MC was refractive, it wasn't responding to treatment. I had been on Colestipol for quite a while for BAM, taking it as directed by Drs, 2 with each meal. I found a support group for BAM and it was advised that for Colestipol to be most effective to take at bedtime on and empty stomach and that a low fat (40 grams of fat)/low residue diet would be most beneficial. It's been working for me. My bm's have been "normal" since the beginning of June, after the worst flare of my life lasting almost more than a year. Hopefully I didn't just jinx myself. Whenever I tell someone that I'm doing ok, things flare up. Keeping my fingers crossed! I hope that maybe this information might help you.

Susanne

[tex]

Marta,

Substitutes for rice and potatoes are somewhat limited, but you might consider sweet potatoes, cassavas, or yams, and vegetables such as cauliflower, turnips, rutabaga, etc. Cauliflower can be mashed to resemble mashed potatoes, for example.

Tex

[Catieu]

Thank you very much, Susieq. I hope you continue well and that talking about how well you’re doing hasn’t brought you any bad luck. At the moment, I’m trying a change in diet to see if I improve. I prefer not to take any medication. If it doesn’t work, I’ll consider what you’ve suggested to try.

Thank you very much for your suggestions, Tex. I’ve eliminated all the ingredients from my previous diet. I’ve been eating only goat, rabbit, sweet potato, and cassava for two days. The stools have improved very, very little, but there is a change. Even though it’s almost insignificant, it gives me hope. However, the gas has gotten much worse. My stomach swells a lot, it looks like a balloon. I can’t seem to expel the gas, so I spend most of the day feeling like I’m going to burst. Should I consider that these foods might not be suitable either?

I’ve spoken again with Dr. Fine. Everything remains the same. Tests still can’t be done in Greece. I’ll keep you all informed.

Thank you so much for your patience. I feel very fortunate to be accompanied on this difficult path to recovery. I will be eternally grateful.

A big hug,
Marta

[tex]

The gas is almost always the result of incomplete digestion of carbohydrates. Most of us have the same problem, until we begin to recover and our digestion improves. You might be able to switch to some other vegetable, or vegetables, or just eat nothing but meat. If that stops the bloating, then you know for sure what's causing it. If you eat nothing but meat for more than a few days, be sure the meat contains some fat in order to provide the nutrition your body needs. We can do without carbohydrates, but we have to have protein and fat in our diet.

Tex

[Catieu]

Yesterday, I only ate cassava and reduced the quantity, and the bloating improved a little. Today, I'm going to try eating only sweet potato. Regarding the fat in the meat you mentioned, rabbit and goat are low-fat meats. Would it be okay to add a drizzle of olive oil on top or take a tablespoon with meals to compensate?
And another question: Do you think I could also eat the liver from the goat?

Thanks a lot.

A big hug
Marta

[tex]

Yes, it should be okay to drizzle olive oil on your food, and as far as I'm aware, it's safe to eat goat liver while we're recovering.

Tex

[Catieu]

Hello again,
I'm still the same. Liquid stools and pain since mid-August. There's no way to improve. I've been eating only goat, rabbit, sweet potato, and yucca. Since the consistency of my stools hasn't improved, I've tried different combinations of these four ingredients, sticking to just one meat and one carbohydrate. I've also eliminated the homemade electrolyte drink you recommended and now only drink water. I've switched from olive oil to coconut oil. I don't know what else to do. There's something I'm not doing right, but I have no idea what it is. I don't think it's anything I'm eating. I'm also careful about cross-contamination with gluten, cosmetics, and chemicals.

I've stopped menstruating. Due to my age, it could be that I'm entering menopause, but until now, my periods were very regular, and I don't have any other symptoms. Maybe it's due to weight loss.

I'm very frustrated. I feel lost and also scared. I'm afraid I might be harming myself. I need a small sign that I'm doing the right thing. I don't mind continuing with just two ingredients if I know it's the right path.

What do you think might be happening? I don't understand why, since March, I was eating the same things (turkey, fish, potatoes, and rice) with slight improvement, and then suddenly I entered this worsening phase that I can't control. It doesn't make sense. If I'm intolerant to what I was eating, how could I not have reacted for five months? It's totally baffling.

I've thought about taking Loperamide for a couple of days. I know it won't cure me, and it's not a treatment I can extend, but it might give me a bit of relief. What do you think?

Thank you so much for your support.
It's always a comfort to be able to come here.

A big hug,
Marta

[tex]

As Suzanne suggested a few posts ago, it's time to try cholestyramine when nothing else is working. The newsletter at the following link gives detailed instructions on the brand to use and how to go about finding the best dose. You can either read or download a copy of the newsletter by clicking the following link:

https://www.microscopiccolitisfoundatio ... mplate.pdf

Tex

[Catieu]

I had already thought about it. But since I'm going to have a blood test at the end of September, I wanted to take the opportunity to check my bile acids to make sure that this problem really exists. I’ve been medication-free for a year now, and I’d like to keep it that way. Are these tests reliable? Or could they come back normal, and I still have a problem? Also, I need a prescription for this medication, so if I don’t go to the doctor and explain my intentions to take it, I won’t be able to buy it. I hope they agree, although they find the whole diet thing amusing. We know how they are.

I’ll read the link you sent me.

Thank you so much, Tex.

[tex]

I have no idea which medical tests are available in Spain, so I have no way of knowing whether they can diagnose BAM, or not. Regarding a prescription, cholestyramine is commonly prescribed to treat MC in most countries, and most clinicians will prescribe cholestyramine without hesitation, because it's most frequently used to lower cholesterol levels. But doctors tend to prescribe it early on, without any dietary changes, and so it rarely is effective for resolving the symptoms of MC. But when it's used properly, after the proper dietary changes have been made, it is typically very effective for resolving MC cases that are refractive to conventional treatment.

Tex

[Catieu]

Thank you so much, Tex.

I’ll contact my doctor to get a prescription and start taking it.

Some more questions, please....
To begin with, what dosage do you recommend?
Can I take it all at once, or should I spread it out throughout the day as I did when I tried it before?
The format we have here is a powder in suspension. Can I add more packets to the same amount of water, or do I also need to increase the amount of water?
Would taking it before bed be a good time?
And will this treatment be for life, or will I be able to stop it at some point when I improve?

Thanks a lot
Marta

[tex]

You obviously haven't read the newsletter that I recommended, because it answers all of the questions you're asking. Read the newsletter. Carefully.

The one question it doesn't answer is whether you will have to take cholestyramine for life, and I can't tell you that, because it depends on how your body responds to the treatment. You may, or may not have to take it for life, depending on how your body adjusts.
Tex