I need your help please.

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Catieu
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I need your help please.

Post by Catieu »

Hello everyone,

My name is Marta, and I live in a village near Barcelona, Catalonia.
I've been diagnosed with CM since 2011, but I found this forum earlier this January. Language is a major inconvenience for me because my English is very basic, and when I read your posts, I have to rely on a translator. So, forgive me if I don't express myself correctly.

I'm also diagnosed with Hashimoto's hypothyroidism. Currently, I'm without any medication for colitis and experiencing many symptoms: diarrhea, gas, burping, extreme fatigue, anemia, altered thyroid, dizziness, joint pains, brain fog, headaches... Previously, I was treated with Beclomethasone. However, I had to stop it because it caused a cataract in one eye. The other medications usually prescribed haven't worked for me. I'm trying remission through diet, but so far, I'm not succeeding. I contacted Enterolab, with Dr. Fine, but they no longer do tests in Europe. If I were feeling better, I would travel to Dallas to get tested, but in my current state, it's completely impossible. I've also read three books by Wayne, two translated into Spanish plus "The Microscopic Colitis."

I wanted to ask you some questions:

1.- Many years ago, I had blood tests for food intolerances. It's clear to me now that they aren't reliable. I understand that I might be intolerant to foods it says I'm tolerant to. But can I trust that I'm really not intolerant to the ones it says I'm not tolerant to?
2.- Has anyone taken Iron Bisglycinate for anemia? I've seen that many of you take Proferrin, which is a heme iron, but I can't get it here. My endocrinologist recommends Iron Bisglycinate.
3.- When do you consider you've entered remission? When bowel movements are completely normal? Or when the number of bowel movements decreases? Or when they change from liquid to solid? Or when you no longer have any pain?
4.- I find it very difficult to drink liquids when my stomach hurts. Also, all the electrolyte drinks have a sweet taste that often makes me nauseous. Do you know of any alternatives?
5.- I've started eating: white rice, potato, sweet potato, turkey, white fish, carrot, and turkey bone broth. All organic. Is it enough? I tried very cooked apple, but I don't think it agreed with me. How long do I have to eat only this? Until bowel movements are normal? And if it takes a long time, with these foods, do you think I have a sufficient diet nutritionally speaking?
6.- Any remedy for when the stomach hurts? I apply heat, it seems to calm me down but not completely.
7.- Do you experience that there are foods that sometimes repeat on you? I mean, you burp with the taste of the food.
8.- Is there anyone here from Catalonia or Spain?

Wow, what a long message I've written to you, sorry but my ignorance is immense.

Thank you very much
A big hug

Marta
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tex
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Re: I need your help please.

Post by tex »

Hello Marta,

1.- Many years ago, I had blood tests for food intolerances. It's clear to me now that they aren't reliable. I understand that I might be intolerant to foods it says I'm tolerant to. But can I trust that I'm really not intolerant to the ones it says I'm not tolerant to?

Most blood tests produce both false positive and false negative results, so no, those results cannot be trusted.

2.- Has anyone taken Iron Bisglycinate for anemia? I've seen that many of you take Proferrin, which is a heme iron, but I can't get it here. My endocrinologist recommends Iron Bisglycinate.

I have no experience with iron Bisglycinate, and I know nothing about it. You can increase your iron levels by cooking in a cast-iron skillet and cast-iron pots. A couple of spoonfuls of blackstrap molasses each day will also increase your iron level.

3.- When do you consider you've entered remission? When bowel movements are completely normal? Or when the number of bowel movements decreases? Or when they change from liquid to solid? Or when you no longer have any pain?

Everyone has their own definition of remission. My definition is a return to normal bowel movements, with no other symptoms.

4.- I find it very difficult to drink liquids when my stomach hurts. Also, all the electrolyte drinks have a sweet taste that often makes me nauseous. Do you know of any alternatives?

Balanced Electrolyte Concentrate, which does not contain sugar, is sold by the Allergy Research Group, and can be ordered over the internet. Two capsful of concentrate are added to 8 oz. of water.

You can make an inexpensive homemade rehydration drink. Measure all ingredients precisely. Small variations can make the drink less effective or even harmful. Mix together:

1 quart (950 ml) water
½ teaspoon (2.5 g) baking soda
½ teaspoon (2.5 g) table salt
3 to 4 tablespoons (45 to 60 g) sugar
If available, add ¼ teaspoon (1.25 g) salt substitute, such as "Lite Salt".

5.- I've started eating: white rice, potato, sweet potato, turkey, white fish, carrot, and turkey bone broth. All organic. Is it enough? I tried very cooked apple, but I don't think it agreed with me. How long do I have to eat only this? Until bowel movements are normal? And if it takes a long time, with these foods, do you think I have a sufficient diet nutritionally speaking?

if you eat enough of that, it should be fine. Don't worry about nutrition until you're in remission, because as long as we are still reacting, most of our nutrients go into the toilet, anyway. It's impossible to say how long it will take you to reach remission. It may be days, weeks, or a month or more. We're all different.

6.- Any remedy for when the stomach hurts? I apply heat, it seems to calm me down but not completely.

Some patients use heat, and some patients use ice packs.

7.- Do you experience that there are foods that sometimes repeat on you? I mean, you burp with the taste of the food.

Yes, burping and reflux problems are common with this disease.

8.- Is there anyone here from Catalonia or Spain?

I'm not aware of anyone else who is from there.

I hope this helps,

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Catieu
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Re: I need your help please.

Post by Catieu »

Hello Tex,

Thank you so much for your responses. I apologize for not getting back to you earlier, but since I wrote the message, I've been in bed unable to get up except to go to the bathroom. I've already prepared the drink you told my daughter about, and I've been drinking it these days. Thank you.

I would still like to ask you another question, if possible. Do you ever find that eating exactly the same thing, some days it sits well with you and then, another day, for no apparent reason, it makes you feel terrible? This makes it very difficult for me to explore which foods I might be intolerant to.

Thank you again, finding you has been like seeing light at the end of the tunnel. Knowing that there are people who manage, who lead an acceptable life is very encouraging. Reading your responses and seeing myself reflected in what you explain renews my energy. I only regret not having found you earlier and being able to start this adventure of my recovery without medication sooner.

A big hug to all.

Marta
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tex
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Re: I need your help please.

Post by tex »

Hello Marta,

Back when I started trying to figure out what was causing my digestive problems, a little online research made me realize that my symptoms seemed a lot like celiac disease. So I cut gluten out of my diet, started a food journal, and I never intentionally ingested any gluten after that date. At the time, I seemed to react to anything and everything. As you say, some days I would react to a certain food, and some days that same food would be fine. I started avoiding gluten on August 12, 2022. It was about mid October before I could begin to notice with somewhat reasonable accuracy that I reacted to other foods, so I began experimenting with various foods and keeping a careful record in my journal of how I reacted, or how I felt after each meal or snack. Since I had nothing to use as a guide, it took me until January before I decided that I had figured out which foods I needed to avoid. So I reviewed my journal notes, and cut all the suspect foods out of my diet, and within a week or two, I was in early remission.

The point here is that as long as there are enough gluten (anti-gliadin) antibodies remaining in our system, so that the level is above a certain threshold level, gluten tends to dominate our immune system so that our immune system doesn't even pay any attention to our other food sensitivities until that anti-gliadin antibody level decays to a sufficiently low level. Then it begins to detect other food sensitivities. After we cut gluten out of our diet, the length of time required before other food sensitivities can be detected, varies, depending on our antibody level, which depends upon how long we have been reacting to gluten. The longer we react, the higher our antibody level climbs. After we cut a food out of our diet, that antibody levels slowly declines. But whereas antibodies to most foods have about a five or six day half-life, gluten (anti-gliadin) antibodies have a 120-day half-life. Consequently, if we cut most food sensitivities out of our diet, our symptoms begin to fade in a week or less. But after we cut gluten out of our diet, it takes at least 6 to 8 weeks (or more) before our symptoms begin to improve (for most of us). and it takes about that long before gluten loses its dominance of our immune system, so that we can begin to detect reactions to other foods. And every trace of gluten has to be eliminated from our diet at all times, because even a very, very small amount of cross-contamination by gluten can keep the antigliadin antibodies elevated.

I hope this is helpful.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Catieu
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Re: I need your help please.

Post by Catieu »

Hi Tex,

Thank you very much for your response. I've been avoiding gluten and dairy among other foods for years. It's possible that there might be cross-contamination because the rest of the family does eat them, and I'm the one preparing the meals. I'll try to be more careful and avoid handling gluten-containing foods. Thank you.

Since the first message, due to worsening symptoms these days, I've further reduced my food intake. Now I'm only eating boiled potatoes, turkey, and white fish, and drinking the preparation you recommended. I haven't improved much. In terms of energy, maybe a bit, and my bowel movements have changed from being watery to thicker. In these two days, I've already lost another kilogram. It's frustrating, considering how hard it was for me to regain that weight.

I don't know if you've experienced this, but my family is very worried and pressuring me to go back on corticosteroids until I recover a bit. I've been on sick leave since October, and now I weigh 39 kilograms. I stopped taking them because they caused a problem in one of my eyes, a cataract. If I go back on them, it will progress, as the ophthalmologist told me. But sometimes I think maybe it would be worth it, despite this side effect. To regain some strength while continuing the diet and then stopping them again once I gain weight. However, other times I think I haven't taken them since July, and my body must have detoxed from them, and I don't want to start taking them again. What's your opinion on this, Tex? Do you think it would be worth it? It's a shame that Dr. Fine can't perform the Enterolab tests for me.

Oh, I don't know, sorry for being so burdensome.

Thank you very much for your time.
A big hug

Marta
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tex
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Re: I need your help please.

Post by tex »

If your bowel movements have changed from watery to thicker in only two days, you are improving. Your energy won't return until your digestive system heals some more. Your ability to gain weight will return as your intestines heal and your digestion improves. We don't need to eat 100 different foods to be healthy. If you want more food, eat more of the safe foods that you are eating, and you will probably continue to improve. Your doctor prescribed the wrong corticosteroid to treat this disease. The proper medication is budesonide (La budesonida en Español) not Beclomethasone.

If you don't continue to slowly improve over the next few weeks, a prescription for budesonide might help to stop the symptoms, but if I were in your situation again (I resolved my MC symptoms over 20 years ago by only changing my diet), I would continue to stick with the diet and allow my body to heal without any medication.

I hope this helps,

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Catieu
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Re: I need your help please.

Post by Catieu »

Thank you very much, Tex. For now, I'll continue without taking the corticosteroids.
Budesonide didn't work for me. That's why we switched to Beclometasone. This one did work for me.
I hope to be able to tell you in a few days that I've improved.

Thank you very much
A big hug

Marta
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tex
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Re: I need your help please.

Post by tex »

Thanks for your explanation of why your doctor prescribed Beclometasone. Now I understand.

All of us also hope that you will be reporting that you're continuing to improve after a few more days.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
PattyD
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Re: I need your help please.

Post by PattyD »

"Has anyone taken Iron Bisglycinate for anemia? I've seen that many of you take Proferrin, which is a heme iron, but I can't get it here. My endocrinologist recommends Iron Bisglycinate."

There is a wealth of info in a Facebook group https://www.facebook.com/groups/theironprotocol on all things iron and ferritin. There are alot of members so maybe some people from Spain as well.
Catieu
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Re: I need your help please.

Post by Catieu »

Hi Patty,
sorry for the delay.
Thank you very much for your response. I will check out the group you suggest.

A big hug

Marta
Catieu
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Re: I need your help please.

Post by Catieu »

Hello again!!!

For a few weeks now, I've been slowly introducing iron, and I can say that I tolerate it. I've also added magnesium, although I'm not sure if I'm tolerating it well. My bowel movements haven't improved, and some days they've even worsened since I started taking it. I've limited my intake to: red potatoes, sweet potatoes, rice, turkey, and white fish. I also drink the whey drink you recommended daily, and sometimes rice water. I'm very strict and don't eat anything outside of this plan. I think it might be the magnesium causing the issues. But knowing that I need correct magnesium levels to progress, is it right for me to continue taking it?

I understand that if I tolerate a food, such as rice, I can have it in any form or cooking style as long as it's the plain food without additives, right? I found some 100% rice cakes and would like to try them. Although when I spoke with Dr. Fine, he recommended that I avoid all grains, including rice. But I feel good with it. Maybe it's because I associate it with my childhood when my mother prepared it for stomach pain. It works like a balm for me. Do you also think it would be worth giving it up?

One thing that has improved is my energy levels. Between the iron and adjusting the Levothyroxine dosage for my hypothyroidism, I've noticed a change. I've also gained weight, one kilogram. Yay!

Overall, I'm happy. I'd like to improve my bowel movements a bit more, but I have faith that the day will come. Having a bit more energy gives me more motivation.

I tried bone broth, but it didn't sit well with me. I don't understand why. I made it only with turkey bones, no vegetables or bones from other animals. I did add a teaspoon of apple cider vinegar. Maybe that's why. I'll try it without vinegar next time.

The Bowelle app is helping me a lot to keep track of everything easily.

I've read about histamine but I'm not clear with the translator. Since I have MC, does it mean I should have high histamine? How can I find out? I only have symptoms of diarrhea and joint pain.

Thank you very much for your messages; they are very encouraging. When I have a bad day, I tell my family, "I'm going to read a bit on the forum." It lifts my spirits! I will always be grateful to you all.

A big hug,
Marta
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tex
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Re: I need your help please.

Post by tex »

What kind of whey drink are you using? Most of us react to whey.

If you feel that the magnesium is causing diarrhea, either reduce the dose, or stop taking it. Instead, rub magnesium oil or magnesium lotion on your skin. If you use enough, often enough, you can absorb enough magnesium through your skin. You can also absorb magnesium by soaking for 15 or 20 minutes in bathwater in which a cup of Epsom salts have been dissolved.

Very few of us react to rice, so if you don't feel that it is bothering you, it's probably safe to eat.

Most likely, you do not have high histamine issues. Those of us who have histamine problems, usually have an itchy rash, or hives.

I hope this helps,

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Catieu
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Re: I need your help please.

Post by Catieu »

Thank you very much for your response, Tex.You help me a lot.

I drink the preparation you recommended as an isotonic solution (water, sugar, salt, and baking soda), along with rice water occasionally. That’s all.

I’ll try magnesium oil. Does any kind work, or does it need specific characteristics? How many times a day do I need to apply it for it to be effective? Is there a specific place on the body to apply it?

A big hug

Marta
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tex
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Re: I need your help please.

Post by tex »

Obviously, the more skin on which you apply the oil or lotion, and the more often you apply it, the more magnesium you are likely to absorb. Most patients who do this rub it on their arms and legs, and sometimes on their bellies, several times each day, In order to absorb enough magnesium. I'm no expert on transdermal absorption, but I'm guessing that in warmer weather, we are likely to be able to absorb more through our skin than in cooler weather, because in warm weather our skin pores are more likely to be open. And that's why soaking in warm bathwater in which a cup of Epsom salts has been absorbed, works well for many people.

I can't tell you how much you must apply, or how many times you need to use it, because that depends on the temperature, and how well we absorb chemicals through our skin. We have varying absorption rates, depending upon the condition of our skin, temperature, humidity, and probably a few other things.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Catieu
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Re: I need your help please.

Post by Catieu »

Thanks, Tex,

Do all magnesium oils work? Or does it need to have any special features?

Bathing is not an option for me right now. In my country we are facing restrictions due to drought. But soon the good weather will arrive and I will be able to swim in the sea, which I imagine will also help a little.
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