Hi Tex,
I was wondering about gluten in lotions or another topical item which is are not ingested. I see it listed on products, but if it's not ingested then so what? I tried to look it up in your book but couldn't find any reference to it. Perhaps I missed it?
Also, for the most part, slowly, I'm getting better. Once per day with cholestyramine, plus eating my same safe diet - no corn to speak of. But for the last week I have symptoms of heartburn almost constantly. No new meds, no new anything. After I eat the pain subsides for an hour or two, then it comes back. Even drinking water seems to aggravate it. That is not listed as a side effect of cholestyramine but perhaps it is. Constantly belching - like indigestion and burning pain on the right upper ab/chest.
I stopped taking the cholestyramine for a couple days to see if the pain would stop, but it hasn't.
Without taking the cholestyramine, the almost formed stools have completely lost any form. So far I'm still only in the bathroom once a day.
I guess Laine would be an expert here!!
Just wondered if you might have any insights.
Thanks for any help,
Colleen
Some new questions
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Re: Some new questions
I don’t claim to be a Dr (actually a Physical Therapist )...but I’d start taking the cholestyramine twice a day. If that means doubling your dosage, so be it.. It sounds like you need it.
I honestly had a lot of weirdness going on as I increased my cholestyramine dosage. Heartburn wasn’t one of them..gassy, bloated , weird poop, yes. Heartburn, no. Betaine HCl (and again, lots of initially) made that all better. Read up on low stomach acid issues. But won’t that make the heartburn worse Laine? I guess not for many people! Read up I say...
Laine
I honestly had a lot of weirdness going on as I increased my cholestyramine dosage. Heartburn wasn’t one of them..gassy, bloated , weird poop, yes. Heartburn, no. Betaine HCl (and again, lots of initially) made that all better. Read up on low stomach acid issues. But won’t that make the heartburn worse Laine? I guess not for many people! Read up I say...
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: Some new questions
Hi Colleen,
I agree with Laine,that Betaine HCl might help, because most heartburn problems appear to be caused by incomplete digestion of carbohydrates. Years ago, Dr. Michael Eades wrote an article on his blog, describing why a low-carb diet cured heartburn. I also agree with her that you might need to increase your dosage of colestyramine.
Regarding potential problems due to ingredients in products used on the skin, actually this is discussed in the book. The page number may vary, due to various additions, but in the chapter on Difficult Cases – Mast Cells and Satellite Issues, you should find this:
29. Karande, P., Jain, A., Ergun, K., Kispersky, V., & Mitragotri, S. (2005). Design principles of chemical penetration enhancers for transdermal drug delivery. Proceedings of the National Academy of Sciences of the United States of America, 102(13), 4688–4693. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/15774584
To find this information in the book, look in the index for chemical penetration enhancer.
I hope this helps.
Tex
I agree with Laine,that Betaine HCl might help, because most heartburn problems appear to be caused by incomplete digestion of carbohydrates. Years ago, Dr. Michael Eades wrote an article on his blog, describing why a low-carb diet cured heartburn. I also agree with her that you might need to increase your dosage of colestyramine.
Regarding potential problems due to ingredients in products used on the skin, actually this is discussed in the book. The page number may vary, due to various additions, but in the chapter on Difficult Cases – Mast Cells and Satellite Issues, you should find this:
Reference 29 in that quote is:Can gluten in skin care products be a problem for someone who is gluten-sensitive?
The experts appear to be unanimous in their opinion on this issue; they are convinced that there is no way that skin care products that contain gluten can cause any problems for people who are sensitive to gluten, as long as the products only contact the skin and are not ingested. Unfortunately, the personal experiences of many people who have microscopic colitis or celiac sprue, indicate that the experts are wrong.
I have a theory to explain how the experts may be confused on this issue
The epithelia of the intestines contains vertically-elongated cells known as enterocytes, between which lie the tight junctions (the zonula occludens). After the digestive process breaks down molecules of food into peptides and individual amino acids, the tight junctions regulate the passage of these nutrients into the bloodstream. The outer layer of the skin is an epithelia, very similar to the epithelial lining of the intestines, except that it does not contain a mucosal layer (because there is no reason for it to be able to produce mucus). The skin is set up somewhat differently, in that instead of having a single layer of enterocyte cells, that surround the tight junctions, the skin is composed of multiple layers of keratinised squamous cells, but the tight cell junctions still play a vital role in the barrier function of the skin much as they do in the epithelia of the intestines.
Since the intact gluten molecule is too large to pass through the tight junctions of the intestines, it certainly would not be unreasonable to assume that it is also too large to pass through the tight junctions of the skin. The experts cite this as the reason why gluten in skin care products cannot cause problems. In my opinion, this is where the experts miss the boat, because unfortunately, this observation is totally irrelevant to the issue at hand.
The point is, none of us react to the gluten molecule when it’s inside their intestines, either. Actually, we react to certain peptides that are cleaved from the gluten molecule when it is broken down by the digestive system. Specifically, when the amino acid chain that comprises the gluten molecule is broken down by the digestive system, certain segments of the chain cannot be digested into individual amino acids, and some of these short to medium length chains (known as peptides) are responsible for causing the reactions associated with gluten sensitivity.
Though I don’t have the luxury of a well-equipped research laboratory to verify my theory, it seems rather logical that if these peptides can pass through the tight junctions of the lining of the intestines, then there is a very good chance that they might also be capable of passing through the tight junctions of the skin, as well. And if any of the peptides should be successful in passing through those tight junctions in the skin, then there is a very good chance that they might also be capable of triggering a reaction of some type, because if the immune system recognizes them as foreign invaders when they are absorbed in the gut, then it will very likely view them as foreign invaders if they penetrate the skin, as well. After all, the same immune system that is so dedicated to protecting the tight junctions in our intestines is also in charge of monitoring the tight junctions in our skin.
Of course skeptics will immediately raise a question regarding how those peptides might be present in a skin care product. I think the answer is rather obvious. Have you ever read the complete ingredient list on any of those products? They contain many, many ingredients, and some of them are pretty potent chemicals, with the potential to generate, or enhance, various reactions with other chemicals. It is quite likely, in my opinion, that one or more of those chemicals used in certain products, or the processing steps that are used in manufacturing the products, may be capable of partially breaking down the gluten molecule, to produce some of the same peptides that our digestive system produces when we attempt to digest gluten.
Furthermore, most skin care products are formulated with a chemical ingredient known as a chemical penetration enhancer (CPE) that’s specifically included in order to enhance the absorptivity of the skin. In fact, that's often a selling point and what it means is that the CPE is there to artificially force the tight junctions in the skin to open, thus allowing any gluten-derived peptides that might be present to pass through the tight junctions, so that they will have easy access to epithelial mast cells (Karande, Jain, Ergun, Kispersky, & Mitragotri, 2005).29 Obviously, this could create the potential for a mast cell reaction and possibly other adverse immune system events if those products contain antigenic peptides.
Certainly, as the experts point out, just having gluten in the product would not necessarily cause a problem. But if the right combination of chemicals, or processing, is used so that the gluten molecule is somehow broken down into peptides, then clearly, an immune system reaction could occur, because the peptides would almost surely be able to pass through the tight junctions, triggering a reaction of some type. The reaction might be restricted to the skin, but depending on the chemistry involved, it might also cause systemic effects.
Probably not all of us would be affected, and not all skin care products that contain gluten would necessarily cause a reaction. To be on the safe side though, if you choose to use skin care products that contain gluten, and you are sensitive to gluten, keep the risks in mind and carefully test any skin care products that you might want to use, before wholeheartedly accepting them for regular use.
29. Karande, P., Jain, A., Ergun, K., Kispersky, V., & Mitragotri, S. (2005). Design principles of chemical penetration enhancers for transdermal drug delivery. Proceedings of the National Academy of Sciences of the United States of America, 102(13), 4688–4693. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/15774584
To find this information in the book, look in the index for chemical penetration enhancer.
I hope this helps.
Tex
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.
Re: Some new questions
Thank you both for your replies.
I was taking cholestyramine at lunch and dinner prior to my heartburn problem. I was concerned about the corn in it, but decided I was going to test the tipping point of my corn issues - if indeed i had any. When once per day didn't make me worse, I used it twice per day. I continued to improve but had cut out all other sources of corn so I was doing better. Then this heart burn thing popped up.
Tex it's interesting you said a low carb diet fixes reflux problems because nobody eats less carbs than me! I try to eat mostly meat since theres no fiber to impact my bowel problem.
The other thing I'm most concerned about at this point, is my complete lack of vitamin intake. My diet is terrible for variety. Meat, rice, potato occasionally and very little else. I use vitamin patches. But we all know that doesnt really provide all you need. I had a bone scan done last fall and my GP said I was now at risk for fractures cuz my bones are getting porous. He actually suggested I eat cheeses and drink more milk. (Eye roll here). I said thank you and hung up.
It has been over 2 years now since I've been eating like this. My vitamin stores are completely exhausted I'm sure. You can't lose over 30 pounds and hope to have much left ( when you only weighed 123 to start with). No fruit, no veg, no nothing but meat and rice for the most
part. Everytime I start to add more foods I relapse. So I return to the safe place. If I take a vitamin pill - it sends me to the bathroom. Why? I dont know, but I stop taking it. And I always make sure to get GF, sf, vitamins etc.
At this point I'm certain I'm going to wake up and have my teeth fall right out of my head.
I knew you had covered the gluten question in your book. I have the second book so that's why I didn't find it. I will do more reading.
I will research the HCl for my stomach Laine. I'm sure you are correct that I need more help with my digestion.
This disease is all consuming isn't it? But I know there are worse things, so I'll just shut up and go on!
Thanks for all your help. I couldn't do it without you!! Nor would I want to!!
I was taking cholestyramine at lunch and dinner prior to my heartburn problem. I was concerned about the corn in it, but decided I was going to test the tipping point of my corn issues - if indeed i had any. When once per day didn't make me worse, I used it twice per day. I continued to improve but had cut out all other sources of corn so I was doing better. Then this heart burn thing popped up.
Tex it's interesting you said a low carb diet fixes reflux problems because nobody eats less carbs than me! I try to eat mostly meat since theres no fiber to impact my bowel problem.
The other thing I'm most concerned about at this point, is my complete lack of vitamin intake. My diet is terrible for variety. Meat, rice, potato occasionally and very little else. I use vitamin patches. But we all know that doesnt really provide all you need. I had a bone scan done last fall and my GP said I was now at risk for fractures cuz my bones are getting porous. He actually suggested I eat cheeses and drink more milk. (Eye roll here). I said thank you and hung up.
It has been over 2 years now since I've been eating like this. My vitamin stores are completely exhausted I'm sure. You can't lose over 30 pounds and hope to have much left ( when you only weighed 123 to start with). No fruit, no veg, no nothing but meat and rice for the most
part. Everytime I start to add more foods I relapse. So I return to the safe place. If I take a vitamin pill - it sends me to the bathroom. Why? I dont know, but I stop taking it. And I always make sure to get GF, sf, vitamins etc.
At this point I'm certain I'm going to wake up and have my teeth fall right out of my head.
I knew you had covered the gluten question in your book. I have the second book so that's why I didn't find it. I will do more reading.
I will research the HCl for my stomach Laine. I'm sure you are correct that I need more help with my digestion.
This disease is all consuming isn't it? But I know there are worse things, so I'll just shut up and go on!
Thanks for all your help. I couldn't do it without you!! Nor would I want to!!
Re: Some new questions
Colleen,
I have no idea why this isn't working for you because it's sound reasoning. Here's a link to the original article by Dr. Eades.
https://www.proteinpower.com/heartburn-cured/
Regarding carbs and vitamins. I do eat more carbs than you. My daily carb intake consists of a couple of corn tortillas each day, a couple of bananas with almond bitter or cashew butter, and some Fritos or tortilla chips. And my daily protein comes from bacon, eggs, and pork sausage, on most days. Occasionally I eat a few French fried potatoes, but not very often. Once or twice each week I eat a bowl of Rice or Corn Chex with almond milk.I do take more than a few vitamins and at least 300 mg of magnesium, just to make sure I'm getting enough. I must be, because my blood test results make my doctor smile, and I've been eating this way for many, many years.
As far as I can determine, osteoporosis is a result of compromised nutrient absorption, usually caused by inflammation due to gluten in the diet. But it can be caused by insufficient vitamin D or magnesium in the diet, since vitamin D is necessary for activating the absorption of calcium from the bloodstream, and magnesium has to be sufficient to enable insulin to transfer the calcium to the cells where it's needed. You shouldn't be having increasing osteoporosis problems unless you have ongoing inflammation issues (or inadequate vitamin D or magnesium levels). Normally, even a very limited diet such as yours should contain more than enough calcium. Because deficiencies of vitamin D and magnesium seem to be endemic in the US, you might need to supplement vitamin D and magnesium, in order to absorb the calcium in your diet. I'm not sure why some of us have problems tolerating vitamins, but you're obviously not alone with that problem. A few members here use vitamin patches with good success. They seem to be effective, and they work well, but of course they're somewhat expensive, unfortunately.
Those are just a few thoughts that come to mind. They may or may not be helpful.
Tex
I have no idea why this isn't working for you because it's sound reasoning. Here's a link to the original article by Dr. Eades.
https://www.proteinpower.com/heartburn-cured/
Regarding carbs and vitamins. I do eat more carbs than you. My daily carb intake consists of a couple of corn tortillas each day, a couple of bananas with almond bitter or cashew butter, and some Fritos or tortilla chips. And my daily protein comes from bacon, eggs, and pork sausage, on most days. Occasionally I eat a few French fried potatoes, but not very often. Once or twice each week I eat a bowl of Rice or Corn Chex with almond milk.I do take more than a few vitamins and at least 300 mg of magnesium, just to make sure I'm getting enough. I must be, because my blood test results make my doctor smile, and I've been eating this way for many, many years.
As far as I can determine, osteoporosis is a result of compromised nutrient absorption, usually caused by inflammation due to gluten in the diet. But it can be caused by insufficient vitamin D or magnesium in the diet, since vitamin D is necessary for activating the absorption of calcium from the bloodstream, and magnesium has to be sufficient to enable insulin to transfer the calcium to the cells where it's needed. You shouldn't be having increasing osteoporosis problems unless you have ongoing inflammation issues (or inadequate vitamin D or magnesium levels). Normally, even a very limited diet such as yours should contain more than enough calcium. Because deficiencies of vitamin D and magnesium seem to be endemic in the US, you might need to supplement vitamin D and magnesium, in order to absorb the calcium in your diet. I'm not sure why some of us have problems tolerating vitamins, but you're obviously not alone with that problem. A few members here use vitamin patches with good success. They seem to be effective, and they work well, but of course they're somewhat expensive, unfortunately.
Those are just a few thoughts that come to mind. They may or may not be helpful.
Tex
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.
Re: Some new questions
Funny but not funny ...I weigh the same as you and got to 99# at one point too. Looking at myself in the mirror was awful.
I did no grains ....so no rice because that was a 3+ according to Enterolab . My carbs were pressure cooked carrots, squashes and sweet potatoes. Can you tolerate pressure cooked veggies like that? Eventually I added bananas and sunflower seed butter.
I was slathering myself with magnesium lotion and oil but was still just Buzzing. Buzzing! Never felt that in my life, sleep was awful. Initially I thought I must have wicked thyroid issues or blood sugar issues...nope. Anxiety...crushing anxiety! I was completely surprised when I started looking into low stomach acid issues and anxiety was listed
What?
Starting Betaine HCl and diving into the deep end with it was a game changer for me. Ya , cholestyramine was essential...but the stomach acid settled down the gut churning/gurgling and quickly the Buzzing feeling went away. I remember sitting talking to my internal med Dr friend and he was like....”you just look like a live wire! “....well, the BEtaine HCl made that go away and my sleep got better. I took 5 of those capsules with meals initially ...which is a lot!
Laine
I did no grains ....so no rice because that was a 3+ according to Enterolab . My carbs were pressure cooked carrots, squashes and sweet potatoes. Can you tolerate pressure cooked veggies like that? Eventually I added bananas and sunflower seed butter.
I was slathering myself with magnesium lotion and oil but was still just Buzzing. Buzzing! Never felt that in my life, sleep was awful. Initially I thought I must have wicked thyroid issues or blood sugar issues...nope. Anxiety...crushing anxiety! I was completely surprised when I started looking into low stomach acid issues and anxiety was listed
What?Starting Betaine HCl and diving into the deep end with it was a game changer for me. Ya , cholestyramine was essential...but the stomach acid settled down the gut churning/gurgling and quickly the Buzzing feeling went away. I remember sitting talking to my internal med Dr friend and he was like....”you just look like a live wire! “....well, the BEtaine HCl made that go away and my sleep got better. I took 5 of those capsules with meals initially ...which is a lot!
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: Some new questions
Hello Tex and Laine,
Excuse the horribly late reply on my part as we have been traveling. Never thought there would be so many places with abominable cell coverage and nonexistent wifi but I found them!
Over the past month of continued corn free diet - as far as humanly possible- my symptoms have abated. Praise God. The heartburn has also abated.
I have done lots of research on the betaineHcl which I found fascinating. Laine, I completely identify with the Buzzing feeling as well as the poor sleeping. My sleep pattern is completely frightening.
I wake up in the morning and feel more tired than when I went to bed.
Now that I'm at home, I'm going to try some your suggestions.
I am also ready to try the pressure cooked vegetables. I'm also going to try taking magnesium supplements.
Is cholestyramine something that a person who needs it is on for the rest of their life? Or as the gut heals does the drug become less needed?
I hope you are enjoying the nicer weather wherever you are. Thanks as always for your help.
Colleen
Excuse the horribly late reply on my part as we have been traveling. Never thought there would be so many places with abominable cell coverage and nonexistent wifi but I found them!
Over the past month of continued corn free diet - as far as humanly possible- my symptoms have abated. Praise God. The heartburn has also abated.
I have done lots of research on the betaineHcl which I found fascinating. Laine, I completely identify with the Buzzing feeling as well as the poor sleeping. My sleep pattern is completely frightening.
I wake up in the morning and feel more tired than when I went to bed.
Now that I'm at home, I'm going to try some your suggestions.
I am also ready to try the pressure cooked vegetables. I'm also going to try taking magnesium supplements.
Is cholestyramine something that a person who needs it is on for the rest of their life? Or as the gut heals does the drug become less needed?
I hope you are enjoying the nicer weather wherever you are. Thanks as always for your help.
Colleen
Re: Some new questions
Good question. I'm not sure if Laine is still taking colestyramine, or not, but I believe that most people are probably able to wean off of it eventually. I'm sure the length of time that it's used varies a great deal by the individual, depending on needs.Colleen wrote:Is cholestyramine something that a person who needs it is on for the rest of their life? Or as the gut heals does the drug become less needed?
Thanks, the weather is indeed much nicer here in Central Texas now, and spring is well underway. It's way too dry, but that's common in Texas. Fortunately, we got a little rain today, so things are looking better.
Tex
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.
Re: Some new questions
Still on 8 packets a day...I honestly think this is a forever thing!
My husband and son played hockey and I coached his roller hockey team for years. Still watch all I can!
My husband and son played hockey and I coached his roller hockey team for years. Still watch all I can!
"Do what you can, with what you have, where you are"-Teddy Roosevelt