Weaning Off Entocort

[tex]

Well that's good news, (and sort of, in the nick of time).

The alendronate might be more of a factor than we realize. Have you carefully considered the "qualifications" for using alendronate?

Before using Alendronate :

Some medical conditions may interact with Alendronate . Tell your doctor or pharmacist if you have any medical conditions, especially if any of the following apply to you:

* if you are pregnant, planning to become pregnant, or are breast-feeding
* if you are taking any prescription or nonprescription medicine, herbal preparation, or dietary supplement
* if you have allergies to medicines, foods, or other substances
* if you have a history of stomach or bowel problems (eg, inflammation, ulcer), esophagus problems (eg, heartburn, reflux disease, severe irritation), or kidney problems, or if you have difficult or painful swallowing
* if you have low blood vitamin D levels, cancer, anemia, blood clotting problems, an infection, or calcium metabolism problems
* if you have poor dental hygiene, other dental problems, or you will be having a dental procedure
* if you smoke or drink alcohol
* if you take a corticosteroid (eg, prednisone), or you have had or will be having chemotherapy or radiation treatment
* if you have a mental disorder or other condition that may decrease your ability to follow the dosing instructions for Alendronate

There are a lot of red flags there.

http://www.drugs.com/cdi/alendronate.html

Still, if you look at the professional information, none of those issues appear to be contraindications for taking it. In fact, they are reasons for taking it.

http://www.drugs.com/pro/fosamax.html

The only "suspicious" ingredient in it appears to be lactose.

Just thinking out loud here, but you know that vitamin D has certain "antibiotic" properties in the body. Perhaps the "mechanical processing" and/or cooking of the calcium/vitamin D, may have modified the vitamin D chemistry, (in addition to possibly altering the calcium chemistry).

Anyway, I'm glad to see that your situation is finally turning around - that's a huge a relief.

Tex

[JoAnn]

Hi Gloria, I'm so sorry you're having such a rough time after all you've done.
Just know that you are like a mentor to me and have blazed a trail that has helped me and so many others and will continue to help us. You're a fighter and seem to have a knack for figuring all this out. I'm glad things are improving. JoAnn

[Gloria]

Another month gone by - time to post my progress.

I've been taking 3 mg Entocort a day for three weeks. It's been a little up and down this time, though I've had plenty of Normans. I got nervous this past week because I started seeing some deterioration again.

I've made some additional changes in my diet. I've stopped using the "exotic" flours, such as quinoa, amaranth and buckwheat, though I still occasionally eat buckwheat cereal. I don't think they're the culprit, but it's easier to remove them from consideration. I've also stopped eating all nuts. I'm starting to suspect that fruit is the problem. I almost always had fresh fruit (banana, blueberries or strawberries) and fruit juice for breakfast. Then for lunch I'd have canned fruit: pineapple, peaches, pears, fruit cocktail or applesauce. I noticed when I had problems this past week that I had apple juice each morning - diluted by half with water. I've stopped eating all the fruit and Norman visited again today. I used to get D when I ate fresh fruit as a young woman, so it seems reasonable to suspect it.

I've been reading about the FODMAP diet and have noticed many of the foods I've eliminated are on the diet's forbidden foods list. I think that the authors of that diet may be on to something. I'm still eating some of the items on the list, such as asparagus and am going to give the diet some careful consideration. I'm starting to enjoy some of the root vegetables that Polly loves, such as turnips, beets, and parsnips. They taste pretty good and seem to be easy on my gut.

I don't believe that we have a list of fruits and/or vegetables that should be avoided, so I'm considering putting such a list together. I'll need your help once I've compiled it to ensure that it's accurate. It's always been hard for me to remember which fruits have sorbitol, which are hard on the intestines and so on. I think a list will be helpful. Tex is always reminding us, so maybe a list will save him some duplicate effort.

I'm encouraged by some recent posts by Polly and Andrew where they've shared that they've been able to reintroduce some of the foods they had to eliminate in their quest for remission. Maybe I can someday, too.

Gloria

[mbeezie]

Gloria,

I read this post with great interest. I am also a double DQ1 - I never posted my Enterolab results but here they are:

HLA-DQB1, Allele 1 501
HLA-DQB1, Allele 2 604
HLA, DQ1, subtype 5,6

I am so sorry it has taken you so long to figure out your intolerances. I have only had D since Feb 2009, but I got on an elimination diet within 2 weeks and think I minimized initial damage. I first eliminated gluten, then dairy and then soy, then peanuts/legumes (including green beans). I still occasionally had problems so I also (reluctantly) implemented the FODMAP diet and it works! I really react to some fruits . . . but remember, FODMAP is not just about eliminating fructose - it's about "excess" fructose, meaning that if there is a glucose/fructose balance rather than a fructose excess, it might be better tolerated. I, like you, thought I was having a corn problem, but I wasn't - it was FODAMPS.

I have read that people with double DQ1 tend to have more neuro problems and that was definitely my case. In fact, I had neuro problems long before I had D, which is why I never suspected food as the culprit. Getting off gluten stopped my peripheral neuropathy, leg pains and insomnia and getting off dairy stopped my headaches. Did you ever have neuro issues?

I also am salicylate sensitive. I surely can't tolerate any meds with salicylate, but I also react if I overdo it on food salicylates. I get angioedema (my throat feels like it is swelling and has a lump in it), tachycardia, sweating, anxious, and urgent D. Interestingly, many of the foods high in salicylate are also high in FODMAPs. Salicylates have a cumulative effect and people with a salicylate problem can't clear them readily. Salicylate research and FODMAP research originated in Australia - they are much more advanced in the area of food intolerances and food chemical sensitivities.

I am very interested in getting MRT testing (Signet Corporation) - the test checks for sensitivities to 150 foods and additives. I will be curious to see the results and to compare it to what I already know about my sensitivities - it may be just what I need to fine tune my diet. Scot Lewey has written articles about it and believes it to be very useful for this purpose (he also says it's good for identifying foods for people with Oral Allergy Syndrome, which I have also developed). I am a dietitian and I ordered a continuing education module on MRT - after going through the materials and doing the testing I will have a better idea of its legitimacy. Anyway, for people like us with lots of food intolerances it may be worth the price. I have a garden full of FODMAPS foods and it sure would have been nice to know this before planting! I feel like I have wasted so much time, food and money trying to figure it out. My goal is to NEVER get on meds and to try to control it with diet.

Best wishes to you,

Mary Beth

[tex]

Hi Mary Beth,

Since you posted your gene test results here, I took the liberty of adding them to our list, here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645

I hope you don't mind. (If you do mind, please let me know, and I will promptly remove them, of course).

Thanks,
Tex

[mbeezie]

Tex,

No problem - I had intended to do it but just never got around to it.

Mary Beth

[Gloria]

Hi Mary Beth,
I'm fascinated that you have the identical genetic test results as Polly and me. You also have many of the same food intolerances that I have. I initially suspected salicylates because of the extreme reaction I had to Pepto Bismol. I didn't investigate it too deeply, though I did prepare a summary sheet on foods containing them. I'm going to see how that list correlates with the FODMAPS list.

I guess each time I determine another food problem, I get the Ah-ha! reaction and think I've finally figured it out. Alas, another problem quickly surfaces and I'm back to being a detective.

I don't have a medical background, so I'm not sure what constitutes neuro problems. For some reason I thought the field of neurology had to do with the brain, but it sounds like it has to do with nerves.

I do have insomnia frequently, primarily due to worrying about things in the middle of the night. I guess that would be called anxiety. I occasionally have leg pain, about a couple of times a year. My headaches went away once I reached menopause.

I'm hoping the FODMAPS diet will help unlock the key to my final issues. Like you, I planted a garden with a few of the FODMAPS foods. Maybe once we are healed we can eat them in moderation with a rotation method.

Gloria

[mbeezie]

Gloria,

Definitely check out salicylates. Unfortunately they are in everything from food preservatives (BHA and other benzoates) to cosmetics and skin care products. I had severe reactions to Midol and Aleve, but my absolute worst reaction was to the flu vaccine, which landed me in the ER. I believe there is a connection with all 3 because my reactions followed the same course. I believe the thimerosal (the preservative in the vaccine) was the problem. "mer" is for mercury and "sal" is for salicylate. I already knew I was sensitive to topical thimerosal - it is the ingredient in hard contact lens solution that caused my eyes to itch and burn so badly I had to stop wearing contacts. Interestingly thimerosal is the preservative in vaccines that some believe to be the trigger for autism. I find this link fascinating because those babies sometimes respond to gluten free casein free diets. None of this is proven of course, but I think we all know that doesn't mean anything. In any case, if I ever have to get another vaccine I will get a pediatric version with no preservative.

Salicylates are a know irritant to the GI tract. I wonder if your mouth ulcers are caused by this. I have discovered through trial and error that when I have too many food salicylates it precipitates a bout of GERD like symptoms, which is why I feel like my esophagus is swelling. Also,I have had bouts of gastroparesis (swelling at the outlet of the stomach) and believe salicylates are the culprit. Think about it, could anything that irritates your GI tract be good for leaky gut???

The interesting thing about salicylates is that it is NOT just particular foods, but rather your overall level. This is what makes it so hard to figure out. There are overlaps in the FODMAPS foods and salicylate foods - many of the salicylate foods are fruits.

Information about salicylates and other naturally occurring food chemicals (like amines and glutamates) is in its infancy. Doctors and dietitians in this country dismiss it as quackery. There was some research done in the 70s by Dr. Feingold on salicylates and childhood behavior problems - his research was highly criticized because it wasn't well designed, but many swear by it. Other parts of the world are much more open minded about the connection between food and behavior. Hopefully we will see some more research at some point. With or without research I know salicylates are a problem for me.

Check out the following sites:

http://www.cs.nsw.gov.au/rpa/allergy/re ... lates.html This link takes you to the Royal Prince Alfred Hospital in Sydney, Australia where much of the original salicylate research was done.

www.feingold.org/sas.html This is the link to the Feingold site - they give limited info but you have to join (pay) to get more info. I have not joined.

www.plantpoisonsnadotherrottenstuff.info.

Ok, I've rambled enough.

Mary Beth

[tex]

Mary Beth,

Thank you for the seminar on salicylates, and especially the tip on thimerosal. This is all very enlightening information, and it's much appreciated.

Many thanks,
Tex

[Gloria]

I haven't posted here for 3 months, though I've been actively working to determine additional intolerances during that time.

I noticed that I would have pressure all day after eating a banana with cereal in the morning, so I stopped eating bananas about 3 months ago. The pressure stopped and I went from having two BMs a day to just one a day. I continue to have one BM per day, so that is good news, though I miss eating bananas. I decided to test a banana this morning and by the afternoon I was having pressure and ended up in the bathroom at 4:30 p.m. No more bananas for me. It's interesting that I react to one of the least allergenic foods. It's approved on both the FODMAP and Salicylate diets.

I also stopped eating all fruits a few weeks ago and Norman returned. I'm not excited to report this discovery. I had given up all fruits but berries and pineapple, but it appears that even they cause me problems. I am experimenting with Kiwi and Golden Delicious apples and don't have any conclusions just yet. I hope that I'm not fructose-intolerant and that the problem is salicylates. I can't explain the banana reaction, though. For now, I'm telling myself that tomatoes are my fruit - and they are considered a fruit. I'm happy I can still eat them.

I've experimented with just 1/3 cup of cranberry juice or pineapple juice mixed with water, but I don't think I can handle even that small of an amount for breakfast. I'm hoping I can drink tomato juice. I drink water all the time, unless I'm having almond-rice milk at mealtime.

I created a spreadsheet combining the FODMAP foods with salicylate information. Very few foods are acceptable on both lists, and I have reactions to some of those foods. I don't seem to fit in any category.

I bought some fresh (less than 2 weeks old??) eggs yesterday. I'm nervous about trying them, but I guess I should before they get too old. I don't know what is considered fresh; the farm near my house seems to have fresher ones, but it never has any when I go there.

I'm not sure if I can handle buckwheat. I've been avoiding it while I determine my fruit intolerances. It is in the same family as rhubarb and I'm not sure if I can eat rhubarb. I have some in my yard and need to try it. I've stopped using tapioca in my baked products, but it is an ingredient in the Ener-G egg replacer, which I continue to use. I don't think that I'm intolerant to tapioca, but it's fairly easy to substitute with arrowroot powder, though arrowroot is about 10 times as expensive. I'd love to use cornstarch as a substitute for it, but I don't want to become intolerant to corn products. I eat corn tacos, etc. on an occasional basis. I'm using white and brown rice flour, quinoa flour and arrowroot in my flour blend. I don't seem to have any reactions from this blend.

I am back to taking one Entocort every other day. Any level of Entocort I take remains in my body for 5 weeks and then I begin to notice changes. I've been on one pill every other day for two weeks now, so I won't know if I'll deteriorate for three more weeks. I'm not in any hurry anymore to find out.

Gloria

[tex]

Gloria,

Are you sure that you're actually having a problem with fruit? Remember that bananas and other fruit are excellent sources of fiber, and fiber helps to determine the number and consistency of BMs. When you eat more fiber, you're not going to have the same BMs that you have with less fiber, by definition. IOW, more fiber translates into more, and softer BMs, each day.

Tex

[Gloria]

Tex, I always appreciate and respect your input. We can always count on your interest in our welfare. It means a lot to all of us.

It would be great if fiber were the problem with fruits. I'd think that fruit juice wouldn't bother me if that were the case, however. Also, broccoli, cauliflower and brussel sprouts are high in fiber, but don't seem to affect my stool at all. Yet other high fiber vegetables such as sweet potatoes and lettuce, are a problem. It makes my head spin sometimes. I don't know what the common thread is.

I could live with a softer stool and two trips to the bathroom a day if fiber were the reason. But twice within 5 weeks of getting off Entocort completely, I've had a complete relapse of all my symptoms and I'm back to square one with figuring this out.

I'm still experimenting with the low-salicylate foods, especially the fruits. I investigated salicylates early in my MC because of my extreme reaction to Pepto Bismol, but didn't see a relationship then. After two years of eliminating foods, I can see that many of my problem ones are high in salicylates. But bananas, carrots and onions are an exception to that conclusion.

Gloria

[RUBYREDDOG]

Gloria, You really are determined, I admire that. At least, you are not running to the bathroom multiple times per day with explosive D. You have come a long way and I am confident that you will prevail over this cruel disease.

One Entocort every other day is pretty darn good in my book. I am down to one per day and am enjoying one or two normans per day. The most important thing to me is that the urgency, the need to find a toilet "NOW" is not a problem for me at this time. (thanks to Entocort) That to me is what "getting your life back" is all about.

Thanks for posting your progress. It worries me when you have problems that I have yet to encounter due to the fact that I am still on Entocort. I keep hoping you find that one missing piece to the puzzle.

Hotrod

[tex]

Gloria,

Hmmmmm. I see your point. With fruit juices, though, I believe that citric acid, and sorbitol, are probably the main reasons why we can't drink them without reacting. Virtually all of us can eat well-cooked broccoli, cauliflower, and brussel sprouts, and almost everyone reacts adversely to lettuce.

Incidentally, are you aware that Canada has recently decided to add mustard to their list of labeled allergens, and onion and garlic were/are being considered as allergens to be included in the requirements, also.

http://www.hc-sc.gc.ca/fn-an/label-etiq ... op-eng.php

Tex

[Gloria]

Tex,
No, I didn't realize that Canada has added mustard to their list of labeled allergins. That surprises me - I don't believe that mustard has gluten in it, so it must be that mustard itself is an allergin. I put Plochman's mustard on my sandwich whenever I eat it, but I haven't noticed a problem.

Hotrod,
I feel like we're in this together. Yes, I can't complain about one Entocort every other day. I am trying to decide whether it's more important to be completely off Entocort or to be able to eat some fruit. If it turns out that I can't eat any fruit at all without reacting, I may decide to stay on a small dose of Entocort.

I'm so happy to read that you're down to 1-2 Normans a day without any urgency. You are really progressing well! Do you mind my asking what you've eliminated in order to get this far?

Gloria