Deb's Update-Full Circle!

[drdebc]

Greetings to All,

I have had D for about 30 years. I finally got the diagnosis of MC, 7 years ago. A second colonoscopy, 4 years later did not show MC. When I was 23, I had surgery for a rectal fistula. My aunt and cousin have ulcerative colitis.

Thanks to this forum, I eliminated gluten, dairy, soy, sugar from my diet. Sometimes I am better but usually the D is urgent and frequent regardless of eating the correct foods. As a child, I was allergic to eggs and wheat.
In the past, I needed 9 hours of sleep. However I awoke sad and tired with “brain fog."

I tried the Pepto Bismol plan and followed it carefully. It worked until I tapered off. I tried Allegra and Benadryl. They worked for a while. The only prescription med that sometimes worked was Diphenoxylate/Atrop Tabs. I cannot tolerate red wine even if it is sulfite free. I have a sulfa allergy but I am not sure there is a correlation. I can tolerate alcohol with plain seltzer water and Stevia.

In February, I started seeing an amazing Holistic MD. Unlike many of you on this forum, I struggle with weight issues. My MD enrolled me in a 12 week program of Lifestyle Changes for Spiritual Women. It included targeted nutrition, Metagenics medical food for inflammation, a modified Mediterranean diet with a low glycemic load, moderate exercise and stress management and prayer. I lost 15 lbs and 12 inches! I have 10 to go. However, the D was as bad as ever.

My MD referred me to the only gastrointestinal MD she trusted. He promised to get me well. He did not think I had MC due to the latest colonoscopy.

Between these 2 MDs, I have had every blood, urine, and stool test they could think of. (I plan to have them order the Enterolab tests) The only thing the tests showed was a peanut allergy. I found this odd since peanuts do not seem to affect me. However, I don’t particularly like them. The gastro MD scheduled me for another colonoscopy as well as for a scope (camera) procedure. It was delayed 3 weeks (see below).

In April, I accidentally walked off a landing of my deck and tore my meniscus. The MRI also showed osteo arthritis. The surgeon repaired my meniscus and shaved the knee bone. I have been in physical therapy for 6 weeks. It is better but not healed.

I finally was able to have the scope and colonoscopy. The nurse called me with the results: hiatal hernia, too much acid in the stomach and microscopic colitis. The treatment plan is one Prilosec and three 3 MG capsules of Budesonide in the AM, at least 30 minutes before eating. When I was diagnosed the first time with MC, I refused to take Budesonide. This time I figured I would give it a shot. Per the nurse, this is the dosage for the first month. In 30 days, I am to call her. If the D is better, they will reduce it to 2 pills (6 mg) for month 2. I see the MD at the end of the second month so I do not know if I will still be taking it after 2 months.

Today is day 3. I am a NEW person. I sleep 7-8 hours, I have more energy than I can remember. I wake up alert and happy. The D is a little better. My FEAR is weight gain. I pray I will not have any.

I plan to give a copy of Tex’s book to both MDs. I need some guidance from you, dear forum members regarding dosage of Budesonide. Also, any assistance you can provide to me is greatly appreciated.

Thanks in Advance,
Deb

[tex]

Hi Deb,

I'm sorry that you've been struggling with this for so long, but it's good to see a post from you showing progress. IMO, the fact that the budesonide brought improvements so quickly is evidence that you still have a persistent (but maybe relatively minor) food sensitivity remaining in your diet. Your decision to order EnteroLab testing is (IMO) a very good plan, and hopefully the results will be able to pinpoint any remaining diet issues. I can't remember whether you are taking any other medications, but remember that there are many medications that can prevent us from attaining remission if we are sensitive to them.

Please be aware that PPIs are one of the most iatrongeic medications ever marketed. They have been documented by research to cause and/or exacerbate (among other things) microscopic colitis and osteoporosis. They cause osteoporosis by inhibiting the absorption of essential electrolytes and nutrients, such as calcium and magnesium. They also significantly increase the risk of developing issues such as C. diff and community-acquired pneumonia. Long-term use of PPIs has been shown to cause non-reversible changes (epithelial dysplasia) in the parietal cells of the stomach. This can increase the risk of long-term adverse effects on digestion, and issues such as pernicious anemia. In addition, they weaken the lower esophageal sphincter (LES), which virtually guarantees the perpetuation of acid reflux, and causes a rebound effect with magnified symptoms if a patient attempts to stop using a PPI.

The LES normally prevents stomach contents from back-flowing into the esophagus. It's performance is directly dependent upon the pH of it's backside (the stomach side). The more acidic the stomach contents, the more tightly the LES clenches shut. As the pH of the stomach rises, the LES relaxes and clenches less tightly. Since PPIs work by guaranteeing that the pH of the stomach will never reach normal low levels, over time the LES slowly weakens.

In the real world, PPIs do not actually stop acid reflux. What they do is raise the pH of the chyme so that when reflux occurs, it no longer burns the lining of the esophagus. This reduces the inflammation and physical damage to the mucosa of the esophagus, but it also actually makes reflux more likely to occur (because of the weakened LES muscle). The net result is that PPIs actually cause the very problem that they are prescribed to treat. What could be more iatrogenic than that? IMO it should be illegal to prescribe them except in very special cases.

Evidence That Proton-Pump Inhibitor Therapy Induces the Symptoms it Is Used to Treat

Here is some information on how to eliminate GERD by natural means, from a previous post. As noted by the first 2 links in the following quote, an adequate vitamin D level is very important in helping to prevent GERD issues. In fact, some members have found that taking a significant vitamin D supplement can actually have a therapeutic effect on GERD symptoms.

IMO, GERD is rarely caused by excess acid. While reducing the acidity of the stomach seems to help to reduce the burning for some patients, it does not address the cause of the problem. The cause of GERD can often be traced to insufficient stomach acid, or a weak lower esophageal sphincter (LES), or both. The LES clinches more tightly as the stomach becomes more acidic, and it tends to relax as the stomach contents become less acidic. Because of that, lowering the acidity (except in a very few cases where excess acid actually does exist) may seem to help, but it does not resolve the problem.

In addition, if the LES is not normally allowed to clinch tightly (because of low stomach acidity), like any other muscle, it loses strength, and soon becomes incapable of clinching as tightly as it should. This is why proton pump inhibitors (PPIs) are counterproductive, because they actually cause the very problem that they are prescribed to treat.

The best way to treat GERD is by natural means.

1. Avoid eating foods that are known to be associated with GERD, especially for at least 4 or 5 hours prior to bedtime, such as fried foods, spicy foods, dairy products, coffee, carbonated drinks, alcohol, some types of meat that are difficult to digest, and baked goods made with refined sugar and enriched flour.

2. Avoid lying on your right side, especially while sleeping, because in that position the LES is below the upper portion of the stomach, and if it is not clinched tightly, stomach contents can backflow into the esophagus.

3. If necessary, elevate the head of the bed a few inches, by placing blocks under the legs.

If you have a hiatal hernia and you notice the feeling of something in your throat, the upper portion of your stomach is probably protruding above your diaphragm. To encourage it to slip back into place, drink a glass of warm water (to add some weight), stand on your tiptoes, and then drop abruptly onto your heels. This will usually pop it back into place. If it doesn't work the first time, try standing on tiptoes again, and dropping onto your heels.

For additional tips on controlling GERD, please read the threads at the following links:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14245

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14344

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15313

Tex

Here is an explanation (again, from a previous post) of why we should always avoid lying on our right side (if acid reflux is a problem for us):

When we lie on our right side, the lower esophageal sphincter (LES) is below the level of much of the stomach and it's contents. In this position, if the LES does not remain tightly clinched, stomach contents can backflow into the esophagus, resulting in what's commonly referred to as heartburn, acid reflux or GERD. When we lie on our back, that's not so likely to happen, because the LES is closer to the same level, or slightly above, and when we lie on our left side, it can't happen at all, because the LES is above the stomach. This works. Some people even raise the head of their bed by a few inches, in extreme cases.

If I have any significant amount of contents in my stomach, and I lie on my right side, I can usually feel an uncomfortable pressure within a minute or less, but these days my LES will prevent any reflux. During my recovery from my last surgery, the doctor insisted that I take a PPI (as long as I was in the hospital) and PPIs weaken the LES. After I was discharged from the hospital, I soon discovered that if I tried to lie on my right side, and I fell asleep that way, I would sometimes wake up with a mouth full of acid (which is no fun at all, to say the least, since it's possible to drown in one's own reflux in that sort of situation.)

It is much safer to take an H2 blocker to reduce stomach acidity, if you need pharmacological intervention while you are retraining and strengthening your LES. H2 blockers can be safely stopped at any time without the rebound risk imposed by PPIs. And while it is true that for some of us, H2 blockers can trigger D, the risk is far less than the risk imposed by PPIs.

Please keep in mind that after several decades of D, your digestive system may have forgotten how to form what most people consider to be a "normal" BM. That doesn't mean that achieving that goal is impossible, it just means that it may take longer than it does for most of us. But the most important step of course, is to track down any remaining diet issues, so that you can eliminate the inflammation. After that, healing will come naturally. And hopefully the EnteroLab test results will allow you to do that.

Thank you for the update. Good luck, and I hope that your recovery continues smoothly.

Tex

[drdebc]

Hey Tex,
I take 100 mg of Losartan Tabs per day for high blood pressure. I take fortical nose drops for osteoporosis. The MD saw inflammation issues with my stomach and esophagus. I had no symptoms. Unless I eat something I know not to eat, I do not have acid indigestion. On those very rare occasions, one Tum will cure it. I will research H2 blockers, see what they are, and stop the Prilosec. I think the reason he said Prilosec is that he is trying to control the stomach inflammation. I will send him the information you presented in your post.

I think both of my MDs are trying to help me get well. I also think they are open to suggestions. Neither of them is a "know it all." They admit that little is known regarding MC. I read in your book about Entocort (which I am now taking). It appears my MD is one who prescribes it for a short period of time...two months??? and then re-prescribes it during flare ups. You say it is advantageous to continue a treatment regimen rather than to stop and start it. I just wonder if you have some suggestions I should make to him via his nurse. At age 62, the LAST thing I want to happen is to suffer a relapse. Does going from 9 mg to 6 mg per day per month sound reasonable? I like your idea of tapering off with 3 mg per day, then every other day etc. Do you mean one month in each phase until one is taking none? Or is this tapering done all in the same month?

I am already feeling so much better after a long time that I will starve if I have to do so in order to not gain weight while taking this miracle drug. Also, I had to take prenisone for ITP for months when I was in my 30s. And I certainly do not want my osteoporosis to get worse.

PS Happy Belated Birthday to you!
PSS I am ordering 2 more of your books for them

Thanks again,
Deb

[tex]

As far as I am aware, Losartan is not known to cause or contribute to MC issues. While the bisphosphonates are known to trigger MC for some people, as far as I'm aware, calcitonin-salmon (Fortical) has not been shown to cause that problem, even though it apparently works very similarly to the bisphosphonates. Due to the similarity of it's physiological effects though, it might be prudent to keep it in mind as a possible MC trigger (it's still innocent until proven guilty, though).

Histamine is the signal medium used to command the parietal cells to produce more acid (because a meal is on the way, and it will need to be digested). When histamine attaches to H2 receptors in the stomach, this activates the control circuit (switch) for the parietal cells. H2 blockers are simply antihistamines that attach to H2 receptors (in the stomach) so that histamine cannot attach to them. By blocking the H2 receptors (and thereby preventing them from being activated), they reduce the potential for the parietal cells to produce gastric acid. They were the treatment of choice before PPIs came along. PPIs were (and still are) heavily promoted by the pharmaceutical industry as the hot new drug designed to replace H2 blockers. PPIs accomplish that same goal of reducing stomach acidity by modifying the parietal cells directly. H2 blockers are effective for only a few hours, whereas PPIs are effective for up to about 3 days. Doctors love to prescribe them because they are so effective at reducing stomach acid, but with that effectiveness comes all sorts of unanticipated problems that are sort of swept under the rug by the drug reps.

I believe the book cites research articles that verify the various issues that arise when a budesonide treatment is stopped and restarted. It also notes a medical research reference concerning how naive budesonide users (first-time users) are mostly immune to the increased risk of loss of bone density that normally accompanies the use of any corticosteroid. That benefit is lost if a budesonide treatment is stopped and then restarted.

Yes, a month at 9 mg is common. Exceptions arise if someone develops constipation symptoms, in which case they reduce the dosage as soon as the symptoms of C begin. A few members have used the development of C as the marker that indicated when to lower the dosage at every level (except for the 3 mg and below dosages). Our experience (by "our" I mean the experience of a majority of the members of this board who have used the treatment) shows that the drop from 9 mg per day to 6 mg is rarely a problem. And the drop to 3 mg usually goes almost as smoothly. It's the final stages of the tapering process that are critical to maintaining remission, because remission can be lost if it is not stretched out long enough to get past the critical mast cell population rebuilding phase. Of course, it can also be lost if any food sensitivities remain in the diet, or if any drugs that cause the production of antibodies, or drugs that promote the degranulation of mast cells, are still being used. A list of such drugs is included in the book (page 170). Unfortunately, pro-inflammatory drugs can defeat the benefits of the safest diet in the world.

Most members here who credit an ultra-slow tapering of their budesonide treatment with their success at maintaining remission, remained at the various stages for 2 to 3 weeks (at least). IOW, they took 3 mg every day for at least 2 or 3 weeks, and then dropped to 3 mg every other day for 2 or 3 weeks or so, then 3 mg every third day for 2 or 3 weeks or longer, etc. If they began to lose control, they double-checked their diet for cross-contamination, or took an antihistamine (in case mast cell population rebuilding was the problem).

Thank you for the birthday wishes, and for trying to update your doctors' working knowledge about MC.

[drdebc]

Tex,

I am SO grateful to you and this site! You are one in a million! Re: the links and information you provided to me in the previous post, I will purchase melatonin 6 g at the local herb store tomorrow. I drank the warm water and did the tippy toe test two times and I now realize I had experienced swallowing challenges since it feels so much better now when I swallow. I elevate my head with pillows. However, I am going to add some more. I sleep on my back or on my left side. My vitamin D is 80 but my Holistic MD suspects D deficiency. I go for retest blood tests on Friday. I emailed Gales-Apg to see what supplements she takes for GERD. I do have leg cramps.

I have Blue Cross and I did not see Enterolab. I will call them tomorrow and see if it is included. If not, I will order the tests myself. I had to pay over $500 for a non covered stool test my in system MD ordered. It told me nothing except that I did not have a yeast, bacteria or a parasite issue.
One last questions and I will quit bugging you:
(1) Which test should I order? I spent forever reviewing all of the tests and I can’t decide which one would be best to get rid of food cross-contamination. I wonder if I also need the gluten one in addition to other food allergy tests. (the past blood test did not show celiac) Or maybe I also need the gene panel with fat malabsorption or something else. I will order what you think I need. If possible, please tell me the test to order.

I am about to order 2 more books on the forum.

God bless you, Tex. THANK YOU THANK YOU THANK YOU!!!!!
Deb

PS I will keep the forum notified of my progress

[tex]

My vitamin D is 80 but my Holistic MD suspects D deficiency.

Make sure that the test you are having is the 25(OH) D test (it's pronounced twenty-five hydroxy D). There's another vitamin D test that doctors sometimes mistakenly order, known as the 1,25(OH)₂D test. 1,25(OH)₂D is the active form of vitamin D, but it is not a good measure of vitamin D supplies in the body. In fact it turns out that when the 1,25(OH)₂D test result is high, this seems to correlate with a vitamin D deficiency. That is to say, when the 1,25(OH)₂D result is high, the serum 25(OH)D level will typically be low.

1,25(OH)₂D is produced from 25(OH)D by our kidneys, and the level of 1,25(OH)₂D in the blood is determined by the amount of parathyroid hormone (PTH) and calcium that are present. 1,25(OH)₂D helps us to absorb calcium, and it helps to regulate our PTH level. Normally, this is how it works:

When calcium in your blood is low, your parathyroid starts secreting PTH. PTH starts pulling calcium from your bones and into your blood. PTH also starts telling your kidneys to start making more 1,25(OH)₂D. You have vitamin D stores in your body called 25(OH)D that are ready for the kidney to produce 1,25(OH)₂D when needed, if you get adequate vitamin D intake.

When the kidney starts producing 1,25(OH)₂D, it helps the gut absorb more calcium than usual, to make sure you get enough calcium into your body. When 1,25(OH)₂D increases and helps your body get to the right calcium balance, it tells your parathyroid to stop making so much PTH, and stop pulling calcium from your bones.

On the other hand, when calcium in the blood is high, your parathyroid won’t release much PTH at all. The amount of calcium in your blood tells your parathyroid not to release any PTH, and in turn, PTH doesn’t tell your kidney to produce more 1,25(OH)₂D. So you stop absorbing too much calcium and allows your body to lower its blood calcium.

Parathyroid glands and vitamin D

However, if we are short of vitamin D, then the kidneys may not be able to produce enough 1,25(OH)₂D to provide the proper feedback, and the PTH level can become inappropriately elevated, (which will promote increased serum calcium absorption, simply because not enough 1,25(OH)₂D is available to discourage additional PTH production). One thing leads to another, and everything sort of gets out of balance.

When serum calcium is low, the parathyroid produces more PTH, and the PTH pulls calcium from the bones into the blood. This also stimulates the kidneys to produce additional 1,25(OH)₂D, which serves to limit the PTH level. But if we are deficient in vitamin D, then 1,25(OH)₂D production may not meet the demand, and therefore it will not be able to properly signal to the parathyroid to curtail the PTH production. This can result in unhealthy elevated serum calcium levels (creating a dangerous condition in some extreme cases, because excessive serum calcium levels can cause a heart attack), if supplemental calcium is available, and while this is going on, the imbalance can allow calcium to be pulled from the bones (resulting in bone density loss), simply because of inadequate vitamin D. This is why adequate vitamin D is so essential for bone health. Of course, a tumor on the parathyroid glands can also cause a similar problem by promoting excessive PTH production, and we have at least one member who has had surgery to correct that problem.

Regarding the EneroLab tests, the panels provide the most bang for your buck. Panel A1 includes tests for the 4 most common food sensitivities, gluten, casein, soy, and eggs. Panel C1 includes tests for 11 other common food sensitivities — almond, beef, cashew, chicken, corn, oats, pork, rice, tuna, walnut, and white potato. Most members seem to benefit most from ordering the first option on the list, the combination of Panels A1 and C1. There is a C2 version of the C panel available, for vegetarians, but I'm not aware of any member who has ordered that one, since it's difficult to take in enough protein to promote healing if soy/legumes are a problem.

Due to my limited diet, I have tremendous leg and foot cramps if I do not take magnesium. I take an oral form, but oral magnesium is a laxative, and until you've been in stable remission for a long time, it's much safer (and probably even more effective) to use a transdermal form of magnesium.

You are more than welcome, and I hope that all your work and dedication is rewarded with a lasting and enjoyable remission.

Tex

P. S. It seems that most members spend most of their time on the Main Message Board, so updates posted there typically get many more responses.

[drdebc]

I will call my MD tomorrow and specify the type of D test I need.

Thanks again,
Deb

[Gabes-Apg]

Deb
if you have any hiccups getting your MD to do the referral for the test, there is affordable functional labs that do the tests
I found this in a recent post.

http://grassrootshealth.net/ I think the last time was around $65.

[drdebc]

I just saved your link. My Holistic MD is awesome and I will order the other test if she can't do it. I have a lot of blood work scheduled for Fri.
I think the hospital did a Vit D scan a couple of years ago. It was "normal." We shall see...

On another note, we were in Sydney one Christmas. It was HOT HOT HOT! I bet it is cold there now. It is in the upper 70s on the lake in the Appalachian mountains where I live.

Thanks again,
Deb