An update on my situation

wonderwoman · Post by **wonderwoman** » Sat Mar 23, 2013 8:56 pm

After reducing Entocort to one every third day, I stopped taking it altogether the end of August at which time I started generic Zertec. I had no problems until two months later, the middle of October, when I suppose the Entocort was finally out of my system and BM’s became softer and eventually D again and then WD, just like the two previous times when I went off Entocort. When I am on Entocort it is hard for me to tell if I am reacting to something I have eaten. I am so determined that I will NOT go back on Entocort again because of the side effects from long term use. However, recently my BM's have deteriorated to the point where I have been in a full blown flair for about three weeks and I am almost to the point where I will have to take the Entocort again.

Back in October when I started reacting I began taking 1/2 and sometimes a second 1/2 Imodium a day for several months along with really watching what I ate. Eventually it was a whole Imodium and then a second one and to this day I still can't figure out what I am eating that is causing the D. I recently switched to Pepto Bismol and can't say it has made any difference even with 6 PB a day.

I am down to very few things I am eating and can't find what is causing the explosive WD. I lost 4 pounds this last week.

I make everything from scratch. I eat absolutely no grains including corn and rice. No eggs, dairy, or night shades.

I eat good quality pork, turkey, and fish. I try to get them at Sprouts or Trader Joes. The only fruit I eat is my own home cooked applesauce. I drink Silk almond milk, I eat Sun butter or almond butter with a little honey when I crave something sweet. I eat a lot of overcooked vegetables, often times pureed with a little almond milk to make a soup. Nothing raw. The vegetables I found I cannot tolerate are cooked kale and spinach. Too bad as I love them both and need the dark green vegetables.

Vegetables I have been eating are squash, zucchini, sweet potato, carrots, parsnips, broccoli. I love all veggies but am limiting it to these now.

Switched to steaming my veggies rather than sautéing them in coconut oil thinking it might be too much oil. Quit my fish oil & vitamin E. Checked my vitamins and they all say no gluten, dairy or soy.

I quit making my own chia seed crackers and another one using almond meal thinking that might be it.

I've eliminated the high histamine foods I was eating, shellfish, strawberries, bananas, avocados, including my homemade coconut yogurt. I take a generic Zertec every morning. Occasionally a Benadryl at night for sleep.

Quit almonds and dried cranberries that I used in my breakfast quinoa. Haven't had quinoa this past week and haven’t seen any improvement.

I tried making a small amount of coconut milk this week but still have 2 half gallons of Silk almond milk in the refrigerator that I want to use first before eliminating purchased milk. FYI. The Silk almond milk does not have carrageenan in it where Silk coconut milk and Blue Diamond Almond Breeze do contain carrageenan.

The only RX I take is Levothyroxine.

Stress plays a part in this disease. I’m retired for 13 years and can’t say I am stressed. At least not recently.

I did notice tonight for the first time a large amount of mucus in the toilet. A sign of inflamation.

I really crave something to chew. I remember my husband saying that years ago when he was on a prescribed liquid diet.

My husband is talking about a 14 day Panama Canal Cruise in October. I can’t even get excited because of the dietary issues. I remember how sick I got on our last cruise and that was only 7 days. That flair started a week before boarding while we were sight seeing. We ate at a Thai restaurant the second night of vacation. A big sign in front attracted us to the place. It said GLUTEN FREE!

I do keep up with reading most of the posts but have gotten away from commenting. A big thank you to those who do. Any help would be greatly appreciated. Especially regarding going back on Entocort and I do have a supply on hand..

Post by **tex** » Sun Mar 24, 2013 10:30 am

Hi Charlotte,

This is a tough post to respond to, because you have done a terrific job of refining your diet, and you've obviously really been working hard to achieve remission and discontinue the use of Entocort. As you are well aware, I'm no fan of using drugs to treat this disease, but sometimes we have to do what we have to do, because we run out of safer options.

If I were in your situation, before I went back to using budesonide, I believe I would try a very simple, bland, elimination diet for at least a few weeks or so, because while your current diet appears to be generally safe, you are eating so many foods that it's virtually impossible to say which one (or ones) might be causing your inflammation. In fact, you might have to try more than one elimination diet, because it's possible that the few "safe" foods that you select for the first trial might not actually be safe, and that has tripped up more than one member here.

For example, I would probably try a week of nothing but turkey soup and maybe squash or carrots, to see what happens. I realize that will be tough to do, but you might see encouraging results within a few days, and as soon as you can get your digestive system settled down, then you can experiment with adding foods back in, one at a time, until you find the one/s that were causing the problem.

If that fails, then using only 1 budesonide capsule every 3 days should not impose a serious long-term health risk. Of course, you would need to use a therapeutic dose initially, and then wean down to a low, long-term maintenance dose, as you've done before.

Your case is definitely one of the toughest ones that we've seen on this board. IMO, the problem in some cases is that we have a certain amount of permanent damage that is never going to heal, and that makes it more difficult to maintain remission, because that effectively lowers the threshold at which a reaction can/will be triggered. I'm sure that I have permanent damage, for example, based on Dr. Fines comments when I did a fat malabsorption test 3 and a half years after I had adopted the GF diet.

I'm not aware of any research that has been done to verify that permanent intestinal damage can result from MC, but research data are available to show that in many/most cases, the intestines of adult celiacs never completely heal, and increasing age correlates with a higher risk of permanent damage. If you've read my book, then you are probably aware that based on histological changes in the intestines, there is very little difference between MC and celiac disease — they are basically just two versions of the same disease. The main differences are determined by genetics.

Tex

MBombardier · Post by **MBombardier** » Sun Mar 24, 2013 1:08 pm

Hi Charlotte,

Wow, this is tough. Aside from what Tex recommended, the only things that struck me were... do you make your own sun butter and almond butter? The reason I ask is that I can eat TJ's almond butter but not Maranatha.

I also wondered about the broccoli and other veggies, and fiber issues.

Have you had your thyroid checked lately? You may be over-medicated, since you are losing weight, and you may need a lower dose. Over-medicating thyroid causes D. That's probably unlikely, but you never know.

Broccoli and other cruciferous vegetables can have a deleterious effect on sick thyroids. This is also probably unlikely, but...

Lastly, did you read the article by Dr. Fasano about recalcitrant celiacs? Along with Tex's experience, it made me think that cross-contamination may be a bigger problem for some of us than we suspect.

wonderwoman · Post by **wonderwoman** » Sun Mar 24, 2013 1:44 pm

I did a quick read before running to the store and glad I did. I was going to buy more Pepto Bismol and a bunch of sweet potatoes and bake them in the oven to warm up the house. The desert really cooled off last night.

Since I only have one container of turkey soup left in the freezer, I will buy turkey and make a BIG pot of turkey soup with lots of carrots. I will eat it all week. Nothing else. That will not be a problem for me.

the problem in some cases is that we have a certain amount of permanent damage that is never going to heal, and that makes it more difficult to maintain remission, because that effectively lowers the threshold at which a reaction can/will be triggered.

I don't like to hear that but it could be true.

Marlys, I do have MaraNatha Almond Butter and TJ's SunFlower Seed Butter.

Thyroid was checked in October and it was within normal range. I'm on .75 Levothyroxine. I will call tomorrow and ask for another check as I only have enough RX for 16 days.

Dr. Fasano about recalcitrant celiacs

don't know if I have read this or not. Will check it out after I get home from the store and have my soup cooking.

Gabes-Apg · Post by **Gabes-Apg** » Sun Mar 24, 2013 2:42 pm

Charlotte
in line with Tex's advice, even though i dont have MC symptoms or flares, albeit i still can only handle small amount of ingredients in each meal.
additionally my eating plan has some aspects of Gloria's rotation system, i have chicken and veges for a few days, then my stew and veges for a few days,

as you do have the mucas, go back to low number of ingredients, well cooked soup/mash meals for a week or so and let the inflammation reduced and the gut heal.

to some the eating plan appears bland, repeatative for me it is my best way of minimising inflammation and optimising nutritional absorbtion

hope you feel better soon

Sheila · Post by **Sheila** » Sun Mar 24, 2013 5:47 pm

.............and your story is why I am so reluctant to give up budesinide. I'm down to 3 mg every other day, no D. My intestines wake me up every morning between 5 and 6:30 for the first Norman of at least 3-5 every a.m. I do not want to go through the dreaded WD and all of the rest of the awfulness of a full fledged flare ever again. I am very careful, no gluten, soy, dairy, etc.

Like you, Wonderwoman, I'm "well seasoned".

At my age, I'm afraid I don't heal as well as a younger person. The budesinide side effects aren't too bad although I would love to be able to get off it. I have the requisite "bad" genes, celiac and GF intolerance plus multitudes of other sensitivities. I read your story as a cautionary tale. My life is fairly normal despite the inconvenience of the GF, SF, DF, etc diet. Do I want to risk the comfort of normal and regular bowel movements? At 71 years of age are there great risks to continuing budesinide?

Do you regret stopping budesinide? Has it worked as well after you went back on? I've been widowed again and plan on remaining alone. As Monique so eloquently observed, asking a man to put up with this crappy disease is tough.

I am so sorry you are having such a tough time and hope you can find a solution through diet alone. Please keep us informed, Wonderwoman. Your experiences are so helpful to those of us who would ideally like to discontinue budesinide.

Sheila W

wonderwoman · Post by **wonderwoman** » Sun Mar 24, 2013 9:42 pm

I made my turkey carrot soup and have it cooling. After taking the meat off the bones I returned the bones to the pot with some of the liquid and have them simmering on low to get all the goodies out of the bones. Then I will strain it and add it to the meat and carrots I have cooling. In the morning I will skim the fat off the top and freeze it in smaller containers.

I bought 7 turkey backs and one pkg of thighs at Sprouts. I’ve purchased the backs there before for soup and found there is a lot of meat on them. I also chose them because you get a lot of bone with them.

Sheila asked

Do you regret stopping budesonide?

I don’t think I regret stopping, however, if I end up going back on, I don’t think I would ever go completely off again. (I think I said that once before) One pill every two to three days gave me Normans once a day in the morning just like clockwork. The only problem is then I’m sure I wasn’t as careful about what I ate because the drug took care of it.

When I went back on the drug I didn’t find it as effective however I had Enterolab testing done for a second time after that and found more food intolerances. Have been doing Paleo since May(?) except no eggs.

I am 73 years old and longevity runs in my family. I could easily live another 25 years. I dread thinking of dealing with this another 25 years. Where’s the quality of life.
I read the side effects of taking the drug long term. There are others but these are the ones that make me concerned about taking the drug.

diabetes, high blood pressure, glaucoma, increased susceptibility to infections, muscle weakness, thinning of the bones (osteoporosis) with spine fractures

Other than CC, I am very healthy. I want to keep it that way.

Post by **tex** » Sun Mar 24, 2013 10:31 pm

Charlotte,

You have to remember that the standard long-term dosage rate is considered to be 6 mg per day. At 3 mg every 3 days, you were taking only one-sixth of that amount.

Tex

tlras · Post by **tlras** » Mon Mar 25, 2013 8:03 am

Gosh Charlotte...you were doing so good on such a little amount of Budesonide. Hopefully you can nip the D in the bud with your turkey soup but if it continues and your health declines cause of WD, then I would get back on the Budesonide. I could never live my life with WD every day. We are all going to get something whether it be diabetes, osteoporosis, etc. Heck, I'm sure I will get one or the other and I'm not even taking Budesonide. I think quality over quantity of life. If I had to remain on a med (low dose) to be able to function and be happy then I would definitely do it rather than suffer. Just my opinion.

Wishing you the best.

Terri

ant · Post by **ant** » Mon Mar 25, 2013 9:43 am

Terri said

We are all going to get something whether it be diabetes, osteoporosis, etc. Heck, I'm sure I will get one or the other and I'm not even taking Budesonide. I think quality over quantity of life.

That is sort of where I am at..... but I think that even while taking the low dose of budesonide and having a quality of life we should keep searching for other solutions.....

Best wishes, Ant

coryhub · Post by **coryhub** » Mon Mar 25, 2013 11:12 am

Hi Charlotte,
I'm sorry that you are experiencing such a flare up. Sometimes I wonder if something air bound like breathing in gluten can effect us. When I'm sick I retreat back to my basics: broth, bananas, green tea, mashed potatoes, and I crave burnt GF toast with Smart Balance butter.
I experience similar thoughts about 'quality of life' when I'm frustrated with this disease but when I'm in the middle of a bad time it's easy to forget the hand clapping I do when Norman re-appears. You'll work your way back to that place. It sounds like you are doing a great job with your diet.
You mentioned homemade apple sauce and I have recently been experimenting with making applesauce in the slow cooker using honeycrisp apples. It's easy and turns out warm and wonderful!
Hope you feel better real soon and that you don't lose any more weight (who would have thought we ladies would be worried about being too thin)
Cory

Sheila · Post by **Sheila** » Mon Mar 25, 2013 11:39 am

When side effects for budesinide are considered they are just "possible" side effects, aren't they? Not everyone will get every side effect and some may not experience any of them. I notice a change in the texture of my hair and I think I am more tired than I used to be. I can live with that as long as Norman remains my friend. The next step for me will be reducing the budesinide to every 3 days from every other day. That seems to work for many of us and I think that reduces the risk of nasty side effects down to an acceptable level. I'm going through the yearly "physical" of blood work, mammo, dermatologist etc. I asked to have my thyroid checked because of my increased fatigue and because thyroid issues seem to occur more frequently with MC.

Hope you are feeling better soon, Charlotte. I can almost smell the apple sauce and chicken stock.

Sheila W

coryhub · Post by **coryhub** » Mon Mar 25, 2013 12:26 pm

Hi Shelia,

The most detrimental and worrisome effects of Budesonide for many of us concern the bones. I already have a degree of osteoporosis and so I try and stay off Enocorte as much as possible.

"Corticosteroids cause osteoporosis and fractures in a high percentage of patients. There is a dose-dependent effect, which is difficult to define because of varying durations at each dose. The beneficial effects of steroids on the underlying disease may partially offset the detrimental effects on bone. Because the effects are so variable and can be clinically severe, patients embarking on long-term steroid treatment should have bone density monitored, and measures taken to try to preserve bone. "

Best,
Cory

Sheila · Post by **Sheila** » Mon Mar 25, 2013 2:43 pm

Thanks, Cori. So far my bone density tests are okay but I'm aware they could take a nose dive after a few more years on budesinide. I'm wondering if the effect of budesinide is as severe as other steroids that are absorbed differently. Most of budesinide's steroid is released into the intestines and not directly into the blood stream. Hmmm. Perhaps Tex has some input on this.

I've had many steroid injections into my back prior to back surgeries and hope to avoid any further need for them.

Sheila W

coryhub · Post by **coryhub** » Mon Mar 25, 2013 2:47 pm

Ditto on the steroid shots, on occasion I've had to have one in my foot and also in my knee.
~C