Another Newbie

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Whiplash
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Another Newbie

Post by Whiplash »

I was diagnosed with Collagenous Colitis 2 weeks ago. The doc prescribed Prednisone 10 mg tablets, 4 per day for 1 week, 2 per day for 1 week, 1 per day for 1 week and 1/2 per day for 1 month. To me, 7 weeks seems like a long time to take a steroid.

With the medicine, the diarrhea pretty much cleared up right away, but started up again a couple of days ago, but I think that is probably due to stress as my mother-in-law passed away and we buried her a week ago today. On his way home from her funeral, my nephew stopped at a motel and fell through a window on the 22nd floor, and his funeral was today.

3 1/2 years ago I was diagnosed with prediabets. Because I am a control freak, I have been controlling it by eating very low carb, which means I have pretty much been following Atkins induction. Because I have been eating gluten-free for 3 1/2 years, I am surprised I ended up with colitis. I am concerned about giving up dairy - because of the diabetes, the only fruit I eat are occasionally a few strawberries, and only low-carb veggies like tossed salad, broccoli, cauliflower, spinach and green beans. No high-carb veggies such as beans, potatoes and other root veggies. If I also give up dairy and eat low fat, I don't think there is much left that I can eat.

I have been taking the steroids for the colitis at 2:45 in the afternoon, and every day, about 2 hrs. after I take it, my blood sugar goes so high that I get dizzy and extremely sleepy. I know those are also symptoms of dehydration, but I do believe in this case it is the result of high blood sugar since it never happens until a couple of hrs. after taking the meds.

The doc told me the colitis symptoms will come and go but can never be cured, and he said when it does come on me, I have to be treated for it. Well, taking steroids might help the colitis, but is death and destruction on the diabetes.

I have done a little reading here, and obviously have a lot more to learn. I feel like this post is pretty much a hodge-podge of information, but hopefully you can provide some helpful suggestions. I thank you in advance for your help.
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Post by JFR »

I eat low carb, following Dr Bernstein's "Diabetes Solution". I am gluten, dairy, soy and egg free and of course grain free because of the high carb count and the fact that I tested positive for rice and oats as well as gluten. I also don't eat chicken or beef, following the results of my Enterolab test. I am not low fat. The meats I eat are not low fat. This has not caused me any problem. The only fats I use apart from what is contained in my proteins (meat and fish) are coconut oil and olive oil. I do eat nuts also but in small quantities. This diet really works for me. I no longer have to live in the bathroom. I don't take any medication (All I ever used was Immodium but at my worst it took 6 of them to control things until the next time I would eat when it would all start all over again). I know that some people here have trouble with fats but that has never been a problem for me. This really is doable low carb, at least it has been for me. Don't assume it won't work for you or that it will be too hard. It might take a while for you to figure out what works for you but it will happen. It sounds like you have the desire, the knowledge and the discipline to do this. There might be no "cure" but MC can be controlled with diet. Most people here who take medications take Entocort rather than prednisone. It sound like your doctor is as ignorant of MC as most doctors are. You have come to the right place with many people who have been successful in achieving remission through dietary means, some with the help of medication and some without medication. Diet really is the key. Have you read Tex's (Wayne's)book? If not you can find a link for it in the upper right hand corner

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Whiplash
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Post by Whiplash »

Wow, it sounds like your choices in food are pretty much limited to fish, a few nuts and a few low carb veggies. Even if I add beef and chicken back into the mix, I'm pretty sure I wouldn't be able to handle a diet like this. The only way I have been able to last so long on this low carb diet is because of the desserts I make, but those require eggs and dairy.

I will have to delve a lot further into this and will hopefully find some help in the recipe section of the forum.
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tex
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Post by tex »

Hi Whiplash,

Welcome to our internet family. Jean is correct, your doctor seems to know about as much about treating MC as I know about performing brain surgery (which isn't much :lol:). Prescribing Prednisone to treat CC/MC (as the first line of treatment) has been obsolete for over 10 years now, with the availability of alternative corticosteroids with far fewer side effect risks. I'm sorry that you've had to deal with the loss of 2 family members. Yes, stress is a major trigger for MC.

And as Jean has suggested, quite a few members here successfully prevent the development of diabetes by following a low carb diet. But I believe that you have misunderstood Jean's diet — meat is by far the best source of protein available for the human diet. It's what we evolved to eat (contrary to many modern "experts" who have their own agenda to promote). Believe it or not (most doctors are still lost on this issue) fat is a much safer source of calories than carbs. Here is a medical study, for example, that your doctor will never tell you about:
Abstract
Multiple food allergies required a group of seven patients with elevated serum cholesterol levels to follow a diet in which most of the calories came from beef fat. Their diets contained no sucrose, milk, or grains. They were given nutritional supplements. This is the only group of people in recent times to follow such a diet. During the study, the patients' triglyceride levels decreased from an average of 113 mg/dl to an average of 74 mg/dl; at the same time, their serum cholesterol levels fell from an average of 263 mg/dl to an average of 189 mg/dl. At the beginning of the study, six of the patients had an average high-density lipoprotein percentage of 21%. At the end of the study, the average had risen to 32%. These findings raise an interesting question: are elevated serum cholesterol levels caused in part not by eating animal fat (an extremely "old food"), but by some factor in grains, sucrose, or milk ("new foods") that interferes with cholesterol metabolism?
Reducing the serum cholesterol level with a diet high in animal fat.

You are correct — corticosteroids are notorious for raising blood sugar levels. And long-term use can lead to type 2 diabetes. So if you're going to use a corticosteroid, it should be either Entocort EC or Uceris, or some other medication based on budesonide. These versions can still increase blood sugar levels, but since only a relatively small fraction of them is absorbed into the bloodstream, they carry a much lower side effect risk.

Your doctor is correct that MC is a permanent condition, once the genes that predispose to it are triggered, but that certainly doesn't mean that we have to live with active MC for the rest of our life. The reason why your doctor believes that symptoms will come and go is because the only way he knows to treat it is by the use of drugs (and a poor choice of drugs at that), and as soon as the drugs are discontinued, most patients will relapse, because the inflammation that perpetuates MC is caused by one or more foods in our diet that cause us to produce antibodies.

The fact that your MC appears to have developed after you had been following a GF diet for several years is discouraging, but there's a possibility that the disease was triggered prior to the diet change, and it took several years for the inflammation to reach a level at which your body began to show clinical symptoms. Once the genes that predispose to MC are triggered, then other foods (besides gluten) can also trigger antibody production, and therefore promote inflammation. And unfortunately, dairy is probably the most common problem, after gluten, with soy following very close behind. Once antibody production to a "new" antigen is initiated, reactions usually do not begin immediately. We all have our own personal antibody level thresholds above which we begin to react. But once a reaction begins, it can be self-perpetuating.

It's certainly advisable to keep MC symptoms under control (as your doctor indicated), because untreated autoimmune diseases tend to lead to additional AI diseases. But contrary to what your doctor implied, that does not require the use of medications. Most of us here (after our initial recovery) keep our MC from relapsing by simply avoiding all the foods that cause us to produce antibodies. As long as we continue to carefully control our diet, MC is a non-issue.

Again, welcome aboard, and please feel free to ask anything.

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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Post by tex »

Whiplash,

Incidentally, did your doctor advise you to take the Prednisone at that particular time (in the afternoon)? Glucocorticoids (corticosteroids) are most effective when taken first thing in the morning, after rising, because that is when cortisol (the glucocorticoid produced normally by the body) is at it's peak level, and the body performs best with that arrangement.

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.
Whiplash
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Post by Whiplash »

My doc didn't tell me pretty much anything. The leaflet instructions that came with the meds just said take at the same time every day, and take with food. I guess maybe I should skip my 2:45 PM dose today and take tomorrow morning instead.

The reason I mentioned low fat is because other websites that talk about colitis say to eat low fat. It's good to know that isn't true.

After doing a little reading here, I see that proton pump inhibitors, especially Prevacid can cause MC. For the past 6 months I have been taking Omeprazole, which I understand is a generic for Prevacid. I don't know whether or not to keep taking it because I assume it will make the MC worse, but the reason I started taking it in the first place is because of severe burning in the throat because of acid reflux, so I fear that if I stop taking it, the acid could cause throat cancer.

I know you aren't doctors so can't advise me to stop taking meds, but maybe someone has experience with this and can tell me what they have decided to do in this situation.
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Post by tex »

The reason I mentioned low fat is because other websites that talk about colitis say to eat low fat. It's good to know that isn't true.
Here's the deal with fats: To save time and effort, I'll just quote from the book (pages 21-22):
Other issues that can complicate the disease
Bile is released by the gallbladder into the small intestine to aid in the digestion of fats. Normally, about 90 % of excreted bile acids are reabsorbed from the intestines and recycled back to the liver and the gallbladder. The reabsorption takes place in the terminal ileum (the bottom end of the small intestine). The reabsorption process may be compromised when the ileum, along with nearby areas in the colon, becomes inflamed. If these bile salts cannot be reabsorbed and they remain in the fecal stream, they will often tend to initiate diarrhea and possibly other symptoms as well. It’s quite common for the inflammation associated with MC to extend into the terminal ileum.11

Logical analysis suggests that a possible reason why the bile fatty acids may not be properly recycled when they get to the terminal ileum (as they should be, if the digestive process were proceeding normally) might be because they are still coating the fat globules when they reach the ileum and consequently they are in a state where they cannot be absorbed. In other words, if the pancreatic lipase does not successfully hydrolyze the fats, then the bile salts cannot be reabsorbed. Since they cannot be absorbed and recycled, they pass on into the colon, contributing to diarrhea in the process.

That doesn't necessarily mean that the excess bile is the primary reason for the diarrhea, however. The failure of the pancreatic enzymes to hydrolyze the fats may be the cause of the problem, and the ultimate reason for the compromised pancreatic function is very likely connected with widespread digestive system inflammation that leads to pancreatic inflammation, known as pancreatitis. Also, consider that if most of the bile is lost, rather than recycled, the total demand for bile can increase to as high as approximately 10 times the normal amount. In the long run, losing all that recycled bile is bound to place abnormal demands upon the liver and gallbladder to keep up with the body's needs. This might at least partially explain why gallbladder problems are so commonly associated with microscopic colitis.

Those bile fatty acids are feedstock material that the body uses to manufacture cholesterol to supply its normal needs. If 90 % (more of less) of the bile salts that would normally be recycled, are instead lost due to malabsorption, then the body would obviously need to produce much more cholesterol from scratch. Since as noted above, that could be as high as roughly 10 times the normal production requirements, it would seem logical that serum cholesterol levels might go down, as a function of a long-term malabsorption issue.

In fact, that phenomenon has been documented for active Crohn’s disease.12, 13 It seems likely, then, that the other inflammatory bowel diseases, including microscopic colitis, could also be associated with this phenomenon.
Here are the references noted in that quote:

11. Koskela, R. (2011). Microscopic colitis: Clinical features and gastroduodenal and immunogenic findings. (Doctoral dissertation, University of Oulu). Retrieved from http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf

12. Hrabovský, V., Zadák, Z., Bláha, V., Hyspler, R., & Karlík, T. (2007). [Changes in lipid metabolism in patients in the active phase of Crohn's disease]. [Article in Czech]. Vnitr Lek., 53(10), 1035–1039. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/18072426

13. Hrabovský, V., Zadák, Z., Bláha, V., Hyšpler, R., Karlík, T., Martínek,, A., & Mendlová, A. (2009). Cholesterol metabolism in active Crohn's disease. Wiener Klinische Wochenschrift,
121(7–8), 270–275. doi: 10.1007/s00508-009-1150-6

IOW, the fat problem is an issue when the pancreas becomes inflamed (secondary to the inflammation in the intestines, and other digestive system organs).

Regarding GERD, that question comes up very often here, and there are many discussions about it in the archives. Again, to save time and effort, I'll just point to another thread that you may find to be helpful, especially my first post on the second page of that thread, where I list ways to prevent GERD. Here's a quote of the part of that post that addresses GERD, but please read all of the thread, because as you will see there, vitamin D level is extremely important for preventing/treating GERD, and antihistamines can help.
Tex wrote:You're probably aware that avoiding eating for several hours before bedtime is very helpful, especially for retraining our lower esophageal sphinctor. And avoiding foods known to cause reflux problems at all times is usually necessary for treating a GERD problem. Examples of such foods include chocolate, alcohol, coffee, tomatoes, peppermint, etc. Definitely avoid them for several hours before bedtime, because they can almost guarantee reflux problems.

One very important trick to help prevent GERD/reflux issues is to never lie on your right side, because that position places much of the stomach higher than the lower esophageal sphinctor (LES), which will allow acidic stomach contents to backflow into the esophagus if the LES fails to clench tightly enough at all times. This is very important, because taking any antacid or H2 blocker (or PPI) will lower your stomach acidity, and research shows that the weaker the stomach acidity on the backside of the LES, the less tightly it will clench. IOW, the stronger the stomach acid, the more tightly the LES will clench to hold back the acid. The reason why I advise against PPIs, is because they are known to weaken the clenching strength of the LES, and it can take months to rebuild the strength of the LES after a PPI is discontinued. That makes it very difficult to wean off a PPI, because weaning off them will actually cause the very problem that they are prescribed to treat.

The only time that I ever had a serious reflux problem in my life is when I was recovering from surgery, and the doctor in charge insisted that I take a PPI each day, while in the hospital. As best I can recall, I only took a PPI for 3 days, but it took me many months to get rid of the reflux problem after that. That's when I learned to never sleep on my right side.

Some people find that elevating the head of their bed a few inches by placing those legs on blocks, can help to prevent GERD/reflux problems, also.


http://www.perskyfarms.com/phpBB2/viewtopic.php?t=621

IOW, you should be able to wean off the PPI with H2 blockers, but please be aware that it takes months to overcome the damage caused by PPIs. IMO, PPIs should be illegal, except in very exceptional situations.

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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Post by JFR »

Whiplash wrote:Wow, it sounds like your choices in food are pretty much limited to fish, a few nuts and a few low carb veggies. Even if I add beef and chicken back into the mix, I'm pretty sure I wouldn't be able to handle a diet like this. The only way I have been able to last so long on this low carb diet is because of the desserts I make, but those require eggs and dairy.

I will have to delve a lot further into this and will hopefully find some help in the recipe section of the forum.
The meats I eat are pork, lamb and venison plus cod and salmon for fish. I eat low carb veggies (there are plenty of those) and small amounts of different kinds of berries. I eat a number of different seeds and nuts (almonds, sunflower seed, Brazil nut and pumpkin seeds). That is enough variety for me. I also sometimes make the occasional coconut milk smoothie. I enjoy the simplicity of my diet. If you tell yourself that you could never do this then it will become a self-fulfilling prophesy. The way I try to look at is is that I get to eat very healthy foods and get my health back so no sacrifice involved at all.

Everything has its price. Giving up the foods that make me sick is a price I am more than willing to pay for my good health.

You really can do this.

Jean
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Post by Whiplash »

So it looks to me like I should cut down on fat as long as I have the inflammation, then after that clears up, I can go back to eating more fat again.
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Post by Whiplash »

I need help with a recipe and don't know where else to post this.

Because of diabetes, I eat only about 30 carbs per day, so I don't eat a lot of the things that many of you do eat. Using the substitutes suggested at this site, I believe I can revise my current bread and cake recipes, but the problem is frosting. I usually make cream cheese frosting with artificial sweetener. No dairy, so now that's out. Does anyone have suggestions on how I can make a low carb, gluten and dairy-free frosting that uses an artificial sweetener?
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Post by DebE13 »

I was also given no instructions years ago when I was on prednisone. I ended up taking it in the evening because I wanted to start it as soon as I got it filled. I experienced many undesirable side effects and sleep issues was one of them. Too bad I had to learn here that first thing in the morning is the best time but I'm glad I did.
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Post by Leah »

Welcome Whiplash. We all know how you feel At first, this diet thing seems so daunting and impossible, but if you can figure out your main triggers, then yo may be able to add some foods back in once you get the inflammation under control. If you really want to know for sure about dairy, you can always take the Test from Enterolab and the results will tell you whether or not you are producing too many IgA antibodies ( which lead to inflammation) to that particular food. Google them.

Fat has never been an issue with me. In fact, I purposely use fat because it makes up for some of the other calories I'm not taking in from carbs. I eat all cuts of meat and nitrite free bacon. I also can eat Eggs, so we are ALL not intolerant to them. If I cook with oil, it usually is either coconut or olive. I use coconut milk in cooking ( and my decaf coffee) and almond milk for GF cereal ( even though you don't go there). Some of us can eat nuts and nut butters also. I can't have peanut, but can have almond, cashew, and walnuts.

The thing is, we are all here similar, but all a little different. We have to fine tune out diets as we heal. I am still working on it even after 2 1/2 years, but the good news is after the initial 6 months of a very strict elimination diet ( and Entocort), my gut started to heal and I was able to add many things back in slowly. The hardest part of this journey is now. If you do the hard work now, then life gets better later.

Good luck and ask any questions you have. we are all here to help
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Post by Jonas »

Hi Whiplash,

I was strictly gluten-free for 9 years before I got microscopic colitis. I know I did not have microscopic colitis before becurse whem I got it I lost alot of weight and had alot of body aches.

Gluten is the most common food intolerance, it is no doubt. But i doubt that gluten gave me MC.
I believe myself that I developed my microscopic colitis by prolonged stress, and maybe too much exercise, poor nutrition diet (much sugar, carbs). In my case I don't think it was gluten because I have celiac disease and have been very strickt with it. Is there any reason why it could not be things like oat, soy or dairy that gives you MC alog with chronic stress?

Tex wrote:
Because untreated autoimmune diseases tend to lead to additional AI diseases
I have had psoriasis for 25 years, how could I prevented so I dident get additional AI diseases? By more corticosteroids?

How can I prevent getting additional AI diseases when I have MC, and can't find any more foods to exclude? Is corticosteroids best solution? Or can nutrition rich diet (like paleo) and relaxation techniques be just as good?
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Post by Leah »

These foods don't "give" us MC. The intolerances are usually triggered when the gene that predisposes us to MC is triggered. What usually triggers the gene are things like stress, over use of INSAIDS ( advil), overuse of antibiotics, antidepressant use….etc. It's autoimmune, so for me, just the fact that I am IgA deficient put me at a greater risk for another autoimmune disease.

Besides the proteins that can cause us to produce too many antibodies ( like gluten dairy, soy, and eggs) , there are the foods that we are not intolerant to, but are just "irritants" for an inflamed gut. ( like caffeine, acid, spice, legumes, raw fruits and veggies) Once we get the inflammation down, those foods can usually be added back into the diet. It's all about healing the gut first.

Leah
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Post by tex »

Hi Jonas,

As far as I can determine, psoriasis (like most other AI diseases) is virtually always caused by a combination of stress, inadequate vitamin D level, and untreated gluten sensitivity. Eliminating gluten from the diet and stress from one's lifestyle (and increasing vitamin D availability) will usually resolve psoriasis. In cases where it doesn't, the problem can often be traced to some other environmental sensitivity (such as a sensitivity to dairy, or some other food, or to a global sensitivity to some element such as nickle). By the term "global", I mean that the reaction can be due to either topical (external) contact, or by means of ingestion with food. And of course it may have more than 1 possible cause, i.e., gluten + nickle allergy, for example. Similar to MC, if one is to control it by means of avoidance of triggers, it is almost certainly necessary to do everything right, in order to control the issue, and any trigger overlooked will continue to promote the reaction.

That said, I recognize that there are always exceptional cases (with virtually any disease) that ignore the "rules" and defy statistics and science in general, and if you still have psoriasis at this point, then that apparently applies to your case (or one of the triggers remains undiscovered).

To expand on what Leah said, please bear in mind that this is just my own theory, and I doubt that any doctor in the world would endorse it, because most of it has not been explicitly proven by medical research, and therefore has not been peer-reviewed, but FWIW, IMO, just because we do not develop clinical symptoms to a disease at some point in time does not mean that the genes that predispose to that disease have not been previously triggered, possibly many years earlier. The development of disease requires not only the activation of predisposing genes, but certain environmental influences must also be present. Therefore, you may be correct that stress, too much exercise, and certain diet items may have combined to create the "perfect storm" that finally promoted the development of MC (after the appropriate genes had been previously triggered).

This is part of a theory that I have that says that if we have an existing AI disease, and it remains untreated, along with a vitamin D deficiency, this results in the triggering of numerous AI genes that may inevitably develop into disease later in life, as time and/or environmental conditions allow. In fact, I'll go so far as to predict that if at anytime in our lifetime, our vitamin D level becomes severely deficient, and/or we are subjected to sufficient stress of a chronic nature, either or both of those scenarios can cause irreparable damage to our immune system that results in a cascade of events that may inevitably lead to the development of multiple AI diseases at some point in our life, regardless of what we do when the AI diseases actually begin to appear. We might be able to slow them down, and we might be able to control the symptoms after they develop, but once the genes are triggered, certain consequences are probably inevitable.

Note that this does not mean that we cannot still prevent AI issues for which the genes have not yet been triggered, by taking proper corrective action. It just says that the genes associated with certain AI diseases may have been previously triggered, and there is no known way to reverse that activation. I have a hunch that this may occur as an epigenetic event, but I don't know enough about genetics/epigenetics to be able to explain the details of exactly how it occurs.
Jonas wrote:How can I prevent getting additional AI diseases when I have MC, and can't find any more foods to exclude?
The problem may be something other than food. Remember that when it comes to AI reactions, stress can trump virtually anything. IMO, anything we can do to reduce stress, and eat a non-inflammatory diet is by far the best medicine. The long-term use of moderate to large doses of corticosteroids make me very nervous. Very small maintenance doses are a different matter, and they may have only minor significance, especially those that have limited systemic effects.

If I were in that situation, I would make sure that my vitamin D level is always near the upper end of the "normal" range, which in SI units would be roughly 200–250 nmol/l, but I wouldn't allow it to exceed 375 nmol/l.

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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