Stuck In a Rut - Inflammation + No Weight Gain

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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by tex »

Fruits contained what's known as sugar alcohols (xylitol, sorbitol, mannitol, etc.), and sugar alcohols are not digestible. For some of us, they cause digestive system problems. For example, even though I've been in remission for roughly 20 years, I still can't eat grapes without having diarrhea, and I'm pretty sure that it's because of the sugar alcohol content. Eating too much fat can cause steatorrhea for most MC patients, and fat is a natural lubricant, so that might be the cause of your leakage. Steatorrhea is common for MC patients, so most of us have to limit our fat intake. But it can also be a physical problem, due to muscle control or nerve issues. Anal muscle and nerve issues are associated with MC.

If your symptoms have improved, then it's not likely that you have BAM.

If you're still having pain and/or bleeding from hemorrhoids, you should be using hemorrhoid cream, or coconut oil to soothe the inflammation.

Tex
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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.
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Re: Recently diagnosed and weight loss is concerning

Post by Cvonuffel@gmail.com »

HI, I’m Cathy,
I was recently diagnosed with MC in July. I’m 4’11’ and usually maintained my weight at 97 lbs. I am definitely type A personality too. I have always suffered from constipation and occasional acid reflux as a result of radiation treatment 21 years ago for head/neck cancer, which rendered my thyroid inactive and lack of saliva and scar tissue in my throat. I had noticed in February 2021 I was having more difficulty swallowing and acid reflux so I went to a GI doctor for an endoscopy. Everything was normal but I don’t think she did a tissue sample for MC? I associated my symptoms with aging but the abdominal bloat steadily increased and my constipation issues were becoming less manageable. My thyroid levels were normal so I ruled out possibly hypothyroid.


When my morning symptom of diarrhea started in April of this year, I thought I had an infection, parasite? After that was checked and came back as negative, I went to a GI doctor that diagnosed that severe constipation had caused a blockage in my intestines that was causing diarrhea. After several days of Miralax and Metamucil it passed. I was told to eat more fiber and whole grains, which I have always done. Lean meats, fish, whole grain cereals, arugula salads, eggs, lactose free, fat free milk. I still was experiencing irregular bowel movements, mainly first thing in the morning. I had a colonoscopy done in June and was diagnosed with MC and was prescribed Pepto Bismol for 8 weeks, mostly at bedtime since my symptoms were mainly overnight and 1 to 2 bowel movements in the morning. I was told to keep a food diary to see what could be causing symptoms? Also to eliminate my probiotic, daily multivitamin but to continue with vitamin D so I was absorbing my food, which I did.
Avoid caffeine, chocolate, nuts, raw vegetables, acidic fruits and vegetables, and possibly dairy. I started with the dark chocolate and nuts that I eat very moderately, to see if that would help. I also switched to less fibrous green raw vegetables like arugula to butter lettuces. Symptoms didn’t seem to improve on a daily basis. I also think the stress of trying to figure out what food I was eating that was causing the bloat, lack of being able to pass gas and general uncomfortable feeling in my abdomen I was experiencing didn’t help. I exercise 2 to 3 times a week to handle this but I’m becoming more frustrated because the Pepto Bismol wasn’t solving the issue after taking it for 8 weeks. I stopped taking Pepto Bismol as I started experiencing more stomach pain after taking it and it not being as affective. My GI dr said to try IBgard? Do you have any information on this helping? It says the main side affect is vomiting and I don’t want to risk that.

My Endocrinologist suggested I try Tirosent for my thyroid, which doesn’t have an fillers and said patients with IBD, IBS, Crohn’s, etc have had success switching. I noticed a changed in the inflammation within 24 hours of taking it but the diarrhea/soft stool is the same. I’m trying to get my levels normal and I am concerned about my weight loss. I am 92 pounds now and the thought of going on a gluten free diet scares me because to cut out gluten might send me into a tail spin. Can patients achieve remission without doing a gluten free diet? If I see a nutritionist, will they just start me on a gluten free diet?

Please let me know what I should do? Thank you, Cathy
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by tex »

Hello Cathy,

Welcome to the group. Food sensitivities don't usually cause MC, but the inflammation associated with MC causes increased intestinal permeability (leaky gut), and the first thing all of us develop, is gluten sensitivity, which then perpetuates the inflammation, because it causes our immune system to produce antibodies. If it weren't for the fact that we develop these food sensitivities, the disease (microscopic colitis) would simply fade away, because there would be nothing to perpetuate the inflammation. When we first created this site, nobody in the medical community would agree with us. They all insisted that food sensitivities have nothing to do with microscopic colitis. But they're slowly making progress, and at least a few of them are beginning to agree with us. But regarding your question, because of the development of food sensitivities, you have three options for controlling the symptoms of the disease:

1. Totally avoid gluten (and any other foods that are causing your immune system to produce antibodies).

2. Take a corticosteroid, such as budesonide for the rest of your life, or until it stops working for you.

3. Take an immune system suppressant, typically one of the so-called biologicals.

The first option is the one that most of us use because it's the best choice for superior long-term health, and it's the safest choice (and the only long-term option). The problem with taking a medication, such as budesonide, is that it doesn't work for everyone, and all of these medications become less effective over time, and eventually stop working. And the problem with the immune system suppressants is that many of the older ones, especially, can have draconian side effects, and despite what the manufacturers claim, none of the biologics work for more than about 20 to 30% of MC patients, and they, too, eventually lose effectiveness and stop working. Here's a link to a newsletter published by the Microscopic Colitis Foundation discussing how the pharmaceutical companies overrate the biologicals:

https://www.microscopiccolitisfoundatio ... fcb80f.pdf

Here's a link to a list of previously published newsletters that you can either read, or download for future reference. You might find some of them to be very helpful:

https://www.microscopiccolitisfoundatio ... etter.html

Incidentally, most of us have much worse weight loss problems than you have, until we stop the inflammation and allow our digestive system to heal, so that our digestion becomes normal again. Again, welcome aboard, and please feel free to ask anything. I hope that this is helpful, and I wish that I could offer some other options, but these are the only ones of which I'm aware.

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.
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by amaguire »

Hello:

Was hoping for some comments:

SYMPTOM: Excessive gas / bloating at night while in bed. Came on during the last 2 weeks. Bad enough that am not sleeping with my wife any longer plus it actually wakes me and keeps me awake. During day would say normal, also no changes in BM frequency / consistency.

CHANGES TO DIET: End of October added rice back into diet 1x per day 3/4 - 1 cup. No adverse effects when did this so carrying on. Other than that have stayed consistently strict on food (yes boring eat the same things consistently).

Q1: Does this excessive gas infer "in a flare" or still have significant inflammation ?
Q2: Work has been getting more stressful lately, could this be a contributor ?
Q3: Any ideas ? Increase Mg or Vitamin D3 (taking 300 mg and 5000 IU respectively) ? I'm reluctant to remove foods from diet as am so restricted.

Thanks for comments!
Andy
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by tex »

Andy wrote:Q1: Does this excessive gas infer "in a flare" or still have significant inflammation ?
A significant amount of carbs, such as a cup of rice in one meal, probably amounts to more carb volume, than you have digestive enzymes available for digesting it, resulting in a significant amount of it being only partially digested. When that partially digested rice is fermented by opportunistic bacteria in the colon, the usual result in gas, bloating, and diarrhea. Smaller, more frequent meals are much easier to digest before our digestive system has undergone a significant amount of healing. I'm assuming you're eating white rice. If that's brown rice, it's no wonder you're having a problem, because brown rice has way too much fiber for a recovery diet.

You mentioned carbs in your diet, but not protein. You should be getting most of your nutrients from protein, because not only are safe proteins easier to digest than carbs (when MC is active), but extra protein is needed for healing the digestive system. From a long-term health viewpoint, while protein and fat in the diet are essential, carbs and fiber are strictly optional. Athletes love carbs because they're a source of easy energy, but from a health viewpoint, carbs leave a lot to be desired. Especially while were still recovering, An MC recovery diet should be heavy on proteins, and light on carbs, especially the grains.

The other possibility is that you might be reacting to rice. Some of us are sensitive to rice.
Andy wrote:Q2: Work has been getting more stressful lately, could this be a contributor ?
Yes, stress is a major cause of inflammation, and chronic stress causes chronic inflammation. Enough stress can veto a long-term state of stable remission, and stress can easily keep us from achieving remission when were still recovering.
Andy wrote:Q3: Any ideas ? Increase Mg or Vitamin D3 (taking 300 mg and 5000 IU respectively) ? I'm reluctant to remove foods from diet as am so restricted.
That' should be sufficient magnesium and vitamin D.

if smaller, more frequent meals don't resolve the bloating problem, try substituting safer carbs, such as quinoa, or amaranth, or squash, sweet potatoes, or . . . If you know that you're not sensitive to one of the other common grains, try one of them. If you're not sure about any foods, order the Enterrolab tests — those results will pinpoint the foods that cause you to react.

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.
amaguire
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by amaguire »

Hi Tex:

Thank you for the insightful comments. Makes sense on the carbs -> majority of my calories are not coming from protein I'll realign my diet. Have been an endurance athlete for my life so my mindset has always been carb heavy (sweet potatoes, bananas, buckwheat groats, quinoa, plantain chips, and recently white rice). I've had to tone down level with this MC fun but still do some running and am on my feet a lot with work.

Q: Any insight on whether "level" of digestive enzymes improve with continued healing?

Below are my lab results from June 2022 for reference.

ENTERO LAB RESULTS
Fecal Anti-gliadin IgA: 178 units
Fecal Anti-casein IgA: 252
Fecal Anti-ovalbumin IgA: 151
Fecal Anti-soy IgA: 133
Mean Value 11 Antigenic Foods: 140
3+ foods: corn, beef, almond, white potato
2+ foods: rice, oat, tuna, pork, chicken, walnut, cashew
1+ foods: none
No reactivity foods: none

Grains:
Corn most reactivity
Rice intermediate reactivity
Oat least reactivity

Meats:
Beef most reactivity
Tuna next most reactive
Pork intermediate reactivity
Chicken least reactivity
Andy
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by tex »

Thanks, now we're on the same page. I'm sure you gave us those EnterroLab results early on in this thread, and back in my younger days, I probably would have remembered most of those details. I apologize for not remembering them these days, but those halcyon days of youth are long gone, unfortunately. If any body parts work better in old age, than they do in youth, including the brain, I haven't discovered which ones they might be, yet.

To answer your question, yes, after we reach remission, the inflammation is suppressed, and our intestines have had some time to heal, our ability to produce normal, or near-normal amounts of digestive enzymes slowly returns, in the same order in which the production of those enzymes was lost as we developed MC. And after that point, most of us are able to once again eat normal (or near normal) amounts of fat, fiber, citrus fruits, raw salads, and some of the other things that we miss (other than gluten, casein, soy, and chicken eggs, if we're sensitive to them. The more we heal, the more we can tolerate.

There might be an ancient grain or two you can safely eat. This newsletter published by the Microscopic Colitis Foundation a few years ago defines which ancient grains are safe for us, and which ones are not. For your convenience, here's a direct link where you can read or download a copy:

https://www.microscopiccolitisfoundatio ... 130663.pdf

For extra protein, unless you had a shellfish allergy before you developed MC, you should be able to safely eat any shellfish, including muscles, clams, shrimp, prawns, oysters, crabs, lobsters, octopi, etc.


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.
amaguire
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by amaguire »

Hi Tex:

Thanks for the reply and great info. On the memory thing I get it. I'm 58 and work in the technical field (engineering) and have gone through struggles on being able to "perform" like earlier in my career. A book that gave me perspective and peace on this is Strength to Strength by Arthur Brooks -> highly recommend.

Have a few comments and a question please. Bear with detail maybe will help others too ?

COMMENT: Starting Friday cut back on carbs and increased protein and experienced a huge improvement. Changes:
- no rice (quinoa and buckwheat only)
- banana 1x instead of 2x, no other fruits
- honey 2x teaspoons instead of 2x tablespoons
- jerky for mid-day snacks instead of grain free chips / crackers (vegetable)
- more protein lunch and dinner, less carbs (sweet potato, quinoa, butternut squash)

Q1: Is this carbohydrate intolerance common to MC victims? Or more a result of having it in first place?
Q2: Carb types: fruit / honey versus complex -> do I have to be as stringent in limiting complex carbohydrates ? Really limited on protein sources and need other calories to keep me going.
Q3: Is there any merit in taking Beano or possibly a digestive enzyme? Or these just mask the symptom and not fix the problem ?

Thank you.
Andy
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by tex »

Andy wrote:Q1: Is this carbohydrate intolerance common to MC victims? Or more a result of having it in first place?
The difficulty in digesting carbohydrates is a direct result of the chronic inflammation that causes MC. Inflammation causes the small intestine to drastically reduce the production of digestive enzymes. The first enzyme to be compromised is lactase, making anyone who has intestinal inflammation lactose intolerant. This even occurs with the flu, for example. If the inflammation continues (as it typically does, as MC is developed), the production of additional enzymes is progressively compromised, until eventually we have very few small intestinal digestive enzymes remaining, in limited amounts. Eventually a similar effect happens with pancreatic enzymes for many of us. After the inflammation is controlled, and healing takes place, the ability to produce various enzymes slowly returns, in the same order in which the production of those enzymes was compromised, originally. The last enzyme to gain restored production is lactase, as healing progresses.
Andy wrote:]Q2: Carb types: fruit / honey versus complex -> do I have to be as stringent in limiting complex carbohydrates ? Really limited on protein sources and need other calories to keep me going.
Natural sugars such as honey and maple syrup may be easier to digest than sucrose, fructose, etc. When I was recovering, maple syrup/sugar was the only sugar that I could tolerate in any significant amount. Most fruits contain significant amounts of fructose and sugar alcohols. Fructose has to be digested by the liver, and sugar alcohols are indigestible. As a result, they pass on undigested into the colon, where they're fermented by opportunistic bacteria, causing gas, bloating, and often, diarrhea. In other words, most fruit is not a great option for MC patients during the recovery journey. Vegetables are much safer carbs. Certain fruits, such as bananas, and avocados are exceptions. Avocados, for example have a high calorie content, and are safe for many of us.
Andy wrote:]Q3: Is there any merit in taking Beano or possibly a digestive enzyme? Or these just mask the symptom and not fix the problem ?
Products containing simethicone may help, in certain cases, if they contain safe ingredients, but they shouldn't be necessary, if your diet is clean. Taking digestive enzymes is not likely to provide much benefit, because even if the food is digested, the malabsorption problem that accompanies MC will cause many of the nutrients in our food to wind up in the toilet, anyway, as long as were still reacting.

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.
amaguire
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by amaguire »

Great thank you this helps a lot !
Andy
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by amaguire »

Hello:

Have a follow up question please on hemorrhoids which I continue to have.

Q: Is having them a sign of inflammation ?

I have no straining almost always 1 BM per day. Get sore on rare occasions in which have an additional BM. Have made no dietary or heavy physical lifestyle changes. Today was bad actually had some bleeding, sorry TMI.

Thanks for comments.
Andy
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by tex »

Sorry for the delay in responding. The hosting service that hosts this form had an SSL certificate issue that made the forum unavailable on the Internet.

Regarding your question, rather than repeat all the information here, I suggest you read my blog titled Using Fiber to Deal with Constipation Predominant MC. For your convenience here's a direct link to the blog. Scroll down to the article you want to read.

https://www.microscopiccolitisfoundation.org/blog

Yes, Hemorrhoids are usually a sign of inflammation (inflamed blood vessels), although the inflammation in this case is not necessarily due to MC, 'roids can be caused by various other issues, also, such as constipation. That said, for MC patients, the inflammation more often than not, is indeed associated with the inflammation that causes MC.

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.
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by amaguire »

Hello:

Thanks again for all the feedback to date, have a couple follow up questions in regards to potential histamine reaction.

BACKGROUND:
(1) Had a few occasions recently of getting very painful tongue and/or mouth sores.
(2) Anal soreness still continues (have done all the usual things to alleviate -> stools are almost back to "normal", no constipation, no D, lots of water, am very active, decent amount of fiber daily, no history of hemorrhoids, etc.

Searched the site on mouth sores, led to the direction of a potential histamine reaction ? Reviewed diet - have been daily eating one or more bananas and drinking black tea. I've eliminated the banana and switched to weak green tea (not ready to give up caffeine) for 2x days and the anal soreness is improving. Have remained vigilant / no changes in terms of diet and Magnesium / D3 so am confident not adding some new contamination. Other than the issues above am doing well am very grateful for that !

Q1: Opinion on anal soreness / swelling from histamine intolerance reaction ?
Q2: Suggested waiting period to gage if foods are inducing a histamine reaction ?

Thank you for comments.

- Andy
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by tex »

amaguire wrote:Q1: Opinion on anal soreness / swelling from histamine intolerance reaction ?
I have histamine problems, and bananas, fish, and chickens stored at refrigeration temperatures for two or three days, and anything fermented, seem to be the biggest problems, followed by things like tea, coffee. and carbonated soft drinks. Once a histamine reaction starts, assuming that the trigger is immediately removed, the reaction tends to last at least three or four days in most cases. But I'm guessing that reaction persistence is probably different for each of us, and probably also depends on the amount of histamine exposure when the reaction is triggered.
amaguire wrote:Q2: Suggested waiting period to gage if foods are inducing a histamine reaction ?
I usually begin to react about five or six hours after the exposure, but again that time probably varies by the individual.

How long to wait before testing after a reaction, is difficult to predict, because just because our histamine level declines to below the threshold at which we continue to react, doesn't mean that uur histamine Level is back down to normal. The level is usually still relatively high, and it can take three or four weeks to decline to a normal or near normal level, presumably depending on the amount of diamine oxidase enzyme we have available (and how much histamine we're exposed to on a daily basis, even when we're trying to avoid it. Because of that, were all different, and we probably each have a different sensitivity level.

In other words, if we test too soon after a reaction, were going to be more sensitive than normal, so we will probably react to histamine levels that might not cause us to react if we had waited longer, so that our background histamine level was lower.

Resolving histamine issues can be challenging, to say the least. At least those are my thoughts, after years of dealing with this problem.

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.
amaguire
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Re: Stuck In a Rut - Inflammation + No Weight Gain

Post by amaguire »

Hi Tex:

Thanks for comments and good info.

One follow up please -> any thoughts on whether histamine reaction can manifest itself in the on going anal soreness I've been having ? Know you've mentioned inflammation can happen any place in our digestive tracts. Know we're all different, just looking for some guidance if need to now push into going after the histamine side of this.

Thank you.
Andy
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