Paging Gloria

[Polly]

Hi Gloria,

I hope your flare is subsiding. I really enjoyed seeing your menu choices.

I think you chose the appropriate foods to eliminate for now. I couldn't eat tomatoes for years after my diagnosis but can now, as you know. I am wondering about the quinoa. I know I feel best when I eat no grains at all - although I have never seemed to have a major problem with rice. Potatoes have never been a problem for me.

I know you are trying to avoid sugar, but no sugar substitue works for me. Have you tried diluting your cranberry juice? - I like using seltzer water - makes it seem like a soda. Can you tolerate any other juices like apple? I always assumed the reason I had trouble with the Almond Dream was because of the carrageenan. Ghee didn't work for me. It may have been because the only jar I ever bought had impurities (milk protein) in it. I've read where that's possible. Or maybe you make your own ghee for better quality control?

I seem to tolerate the soy-free Earth Balance spread. You mentioned that it has pea protein. You know, I find that I can tolerate some legumes better than others. Chickpeas (think hummus) don't work for me, but dried peas/lima beans aren't much of a problem. (I make soups with them and always rinse them multiple times after cooking them, so maybe that helps). I wonder if this is due to differing amounts of lectins in them? I've never seen a chart on this...have you?

You are correct, of course, about the yeast protein. So, I guess if I've been exposing myself to it all along in the wine, I must be OK with yeast now. Fortunately, I've never been much of a bread eater, so it's easy for me to eliminate all bread from my diet. But dairy is another issue! WAH - I miss cheese. BTW, I am not of the school of thought that believes that you must have an active yeast infection to be intolerant.

I hope you are feeling better. When do you leave for your trip?

Love,

Polly

[Gloria]

Hi Polly -- I appreciate your input and concern.

I wish I could report that I'm doing better, but I had an accident this morning. I'm trying so hard this time to not increase my Entocort dosage so that I can see a pattern between what I'm eating and my BMs.

Yesterday I had a perfect Norman in the morning and thought for sure the problem was potatoes. But I had D after lunch.

It seems that I should see an improvement within a couple of days of eliminating an offending food. Since Monday, I've eliminated potatoes, lemon juice, ghee, cranberry juice, bread, and aspertame, but haven't seen an improvement. I'm going to eliminate chocolate, guacamole, Almond Dream and olives starting today. That will leave rice and sunflower butter left to eliminate. Rice crackers and sunflower butter are my sole remaining snack.

I could consider eliminating quinoa and buckwheat again, but they're all I have left to eat for breakfast, and I only use 2-3 tablespoons of them. I know that others think I should eat meat and vegetables for breakfast, but I'm cooking all day long as it is and meat is expensive. If I have to do it to cover all my bases, I will, but I'm trying to get rid of the easiest foods first.

Almond Breeze probably has carrageenan, but Almond Dream doesn't. Almond Dream is a fairly new product, within the last year, so you are probably thinking of Almond Breeze.

I haven't tested different types of legumes. I wasn't that crazy about them, anyway, so it hasn't bothered me too much to live without them. I haven't tested them since I've given them up because I'm afraid to. I will probably experiment if I ever am in complete remission.

I leave for Florida in 11 days. I'll stay the course of eliminating additional foods as long as I can, but if I start to deteriorate rapidly, I'll have to increase the Entocort.

Gloria

[Ginny]

Gloria, I'm not able to post much because of work, but I have so much empathy for you, what you have been through and still are going through. My SO and I have added you to our morning rosary and I know it made a huge difference to me when I knew people were praying for my well being. I hope soon you can discover that one particular intolerance that will make the difference. Ginny

[Gloria]

Ginny,

I'm so touched that you and your SO say prayers for me. Sometimes I get discouraged, especially when I have a relapse. This support group is what keeps me going. I know that there are many others here who have compassion for my situation, but don't know what to say to me anymore.

The solution has to be out there; I just haven't found it yet. DH is starting to tell me that he doesn't think food has anything to do with my problem. He's getting frustrated, too. I am a fighter, though, not a quitter, just like everyone else here. What is the alternative? I'll just keep on trying with the hope that someday I'll beat this monster.

Gloria

[Polly]

Hi Gloria,

I didn't catch the name Almond DREAM - that's interesting to know about.

I can hear your frustration. And boy can I relate. I was the first MI here, and it seemed like everyone else's D stopped just by eliminating gluten or gluten/dairy. Mine went on and on and on, and this was before Entocort was available (I refused to go on prednisone as my doc suggested). I honestly don't know why I hung in there with diet so long - I guess mainly because of the wonderful support here.

It WILL get better. How long have you been on the Entocort now? And how long diet? Can you see continuous progress i.e. gradual improvement in bloating and fatigue, fewer flares, etc. Or are you at a standstill? Have you thought about going paleo (no processed foods) for a while to see what happens? And then adding in other foods one at a time?

Hang in there, dear. It is obvious that you are a fighter, and I'll bet anything that you will find the solution.

Love,

Polly

[Gloria]

Hi Polly,

I have been taking Entocort for 2 1/2 years and have eliminated my basic intolerances for the same length of time.

For the past 1 1/2 years, I've been able to maintain on 3 mg. per day for about 55 days. Once I pass that time period, things deteriorate for a couple of weeks until I have a full-blown flare. I increase Entocort up to 9 mg./day until it's better, then I taper until I'm on 3 mg./day. Then the cycle repeats itself. Each time I've had a flair, I've eliminated suspicious foods. It takes 55 days before I realize that I haven't found the last intolerance.

I'm fortunate because I've never had the pain, bloating and fatigue that others report. Neither have I had malabsorption. I don't feel any different because I'm following the diet. I still get mouth sores frequently, which tells me that I'm reacting to something.

It's difficult to say that I've improved because I have the identical frequency and urgency in a flare that I had before I eliminated any foods. It's as though I haven't changed anything. I do need a smaller amount of Entocort to maintain remission than when I began. But that amount has increased from every other day to every day. I'm also requiring a larger dose for a longer period of time to regain control.

I've been eating very close to a Paleo diet since mid-November when I eliminated almost all processed foods, flour and almost all sugar. These are the processed foods I have eaten since then:

Muir Glen catsup
Plotchman's mustard
Almond Dream milk
Elite chocolate bars
Leiber's chocolate chips
Trader Joe's Sunflower Butter
Jones organic sausages
Kitchen Basics chicken and beef broths
Kettle or Cape Cod potato chips
Sesmark brown rice crackers
Lundberg rice cakes
rice pasta
arrowroot powder
xantham gum
white rice flour
quinoa flour

I stopped eating Rice Chex and Arrowhead Mills Buckwheat cereal to reduce my sugar intake. I began making hot cereals using the grain/seed itself.

I started making Jello brand sugar-free gelatin because I missed having dessert and I was trying to keep my sugar intake as low as possible. I sprinkled aspartame on my cereal for the same reason. I stopped eating all bread too, and only recently resumed eating a few slices a week. I drink about one glass of diet Coke a week; the rest of the time I drink water. I make my own ghee, bread, mayonnaise and rice milk.

I rarely eat products containing corn, usually only when I eat at a Mexican restaurant.

I eat out about once a week. That's always risky, I know. I don't think I've been glutened recently.

The supplements I take that are not from Freeda Vitamins are glucosamine-chondroitin tablets from Walgreens, a probiotic and calcium supplements from The Vitamin Shoppe. I've never stopped taking them.

This is probably TMI, but Tex has been suspecting my processed foods also, so I thought I'd list everything. I appreciate your interest and concern.

We'll see what tomorrow brings.

Gloria

[Polly]

Good morning, Gloria!

No wonder you are feeling discouraged. You have really been through the wringer.

OK, here's what I would suggest........desperate situations call for desperate measures (or something like that), right? That is quite a list of processed foods! (I probably eat less than 3-4 processed foods in a week and sometimes none, and since we have the same genes, you may be as sensitive as I).

I would suggest setting aside a few weeks to try strictly paleo. Plan ahead carefully so that you have only fresh foods, olive oil, etc. available each day and try to eat none of the processed foods during that time. It might be best to wait until after your vacation to try this. Can you get Cordain's book from the library? It has helpful meal suggestions. It might make sense to actually plan out 2-3 weeks of menus so that you will know exactly how to shop and cook. What do you think you would miss the most on a strictly paleo diet?

You know, processed foods are tricky. Many are made in facilities that use wheat, dairy, soy, etc., so there is always a danger of contamination. And I know that I react to the teeniest amounts. Also, processed foods are allowed to claim gluten-free even if the product contains gluten, altho it must be below a certain level. But again, many of us react to those very low levels. I know this will seem limiting, but try to have 50% of your calories come from protein and the rest from veggies (apparently you can't do fruits yet). For snacks, think leftover meats/fowl/seafood from the last meal.

A few comments on your list. I would think that some of them, like the ones with rice, can be added back fairly quickly. BTW, you don't use "enriched" rice, do you? Enriched rice often uses barley to make the vitamins adhere to the rice. I have a hunch that you may have to eliminate the chocolate entirely. Both Matthew and I had to (his intolerances are similar to ours, and I also believe he eats no grains whatsoever). I can do rice without problem but not quinoa. What kind of oil is in those sausages? It seems most of them contain soy oil, which I cannot tolerate. Since I had problems with citrus until my gut healed, perhaps you should skip the lemon and lime for now. Can you do apples? They are usually tolerated. Also, I have come to believe that "concentrated" foods may not be the best for us. By that I mean the almond milk, cranberry and other juices - anthing that had been made by compacting large amounts of a food. For example, a single orange may be OK, but not juice which has been made from 10 oranges.

When eating out, all is out of our control, unfortunately. My best example of this: When I was in N.Y. for the day, we ate lunch at a seafood restaurant. The Manhattan clam chowder on the menu looked safe, so I asked the waiter about it. He actually had a looseleaf binder that listed of every ingredient in every offering, so he gave it to me to check. Sure enough, the chowder appeared safe, so I ordered it. When it arrived, it looked gloppy (thick) which may me suspicious of flour. I asked the waiter to check with the chef, and sure enough, the chef had added some flour that day because he thought the soup looked too thin, even tho the official recipe was supposed to be gluten-free. That experience was what has prompted me to bring my whole meal along to a restaurant if I cannot be sure how things are prepared. Again, I know it sounds crazy, but "desperate measures", right?

I would also doublecheck with the manufacturer of the glucosamine, probiotic, and calcium to make certain they contain no intolerances.

I really do believe that you are having continued inflammation due to something in your diet. Please don't be discouraged about becoming even more restrictive. I am living proof that one can adapt to the paleo diet and learn to actually like it. BTW, I never had major bloating, pain, or any malabsorption. (again, it must be those similar genes). And, I really do believe that you will be able to add foods once your gut has healed enough. I have been able to add back citrus and some nightshades, for example.

Once again, hang in there. You must be one of the most patient people in the world! Better days are ahead!

Love,

Polly

[ant]

Dear Gloria

Just read through this thread. I cannot add anything to the food discussion but I am willing you to reach that goal of long term remission.

It is so difficult to discuss and explain all this to others accept, thank goodness, people here.

Continued hope, prayers and best wishes,

Love, Ant

[Gloria]

Polly,

Well, I thought my list of processed foods was quite short: no mixes of any sort, no cookies, ice cream, sorbets, etc. I understand your point, however. Any processed food is suspect when dealing with this disease, especially if you're MI.

I've checked out Corbin's book a few times from the library. Frankly, the idea of eating nothing but meat and vegetables three times a day sounds limited and unappealing, particularly when I can't eat some of the acceptable foods, such as carrots, sweet potatoes, yams, squash, onions, red/green peppers, eggs, and fruit. I see it as a last resort option, but I seem to be at my last resort.

I would miss chocolate the most; it's my only indulgence. I can't eat any fruit other than lemons and limes, but I've stopped eating all fruits. I believe the problem is the fructose level. The Jones sausage contains water, sea salt and maple syrup.

Once I increase my Entocort dosage, I have to wait 4-6 months (due to tapering time) to know if my dietary changes worked - and they haven't thus far. I'll decide what to do once I get back from Florida, based upon whether I've had to increase the Entocort.

Being a retired math teacher, I approach everything very logically, as you may have gathered. I'll be pondering all of your very detailed and appreciated advice.

Gloria

[Matthew]

Gloria

How great to see someone actually list what they eat. It is a wonderful way for those of us who have gained remission through diet to be able to try and help.

Polly’s wonderfully thoughtful post says it better than I ever could. Polly and I have many of the same intolerance's. It’s just nice to know that I am not totally insane about what I eat. Well....Maybe a little!

Their is absolutely nothing on your processed foods list that would not cause problems for me. I know that such a statement is hard to hear. When I first started my journey I thought I could never , ever deal with such a restricted diet. The joke was on me because following the basic tenants of the Paleo diet has opened a whole new world of foods that I enjoy more than any time in my life. The Paleo diet is not a punishment but for me,a wonderful gift.

I see that you were/ are a math teacher. I dearly hope this this concept might give you a new way of looking at our problem. I have used Math and geometry in my wood working shop ever day for 41 years. Pretty basic stuff like dividing circles or curves, ellipses or simple proportion. In one of those WOW moments I realized that using the same formula over and over and still not coming up with useful numbers that I was using the wrong formula.

Well DUH.

It was exactly the same with diet and what I could eat and not eat. Use the same formula and come up with a false answer and wonder why it does not work. Sometimes it is simple as putting in the correct numbers. In other words chage what I eat Other times I have to create a whole new theorem. A whole new way of looking at food and life style.

I have been astonished for years how astute so many members are that have found remission with just that kind of thinking.

I can’t tell you how to eat but just hope against hope that I can give you a new way of looking at it.

Love

Matthew

[tex]

Gloria,

Of course, I agree with Polly's observations, and I would like to add a couple of observations of my own. Of this list:

Muir Glen catsup
Plotchman's mustard
Almond Dream milk
Elite chocolate bars
Leiber's chocolate chips
Trader Joe's Sunflower Butter
Jones organic sausages
Kitchen Basics chicken and beef broths
Kettle or Cape Cod potato chips
Sesmark brown rice crackers
Lundberg rice cakes
rice pasta
arrowroot powder
xantham gum
white rice flour
quinoa flour

in the long run, I doubt that I could have tolerated a third of them. Seriously. Oh, I might have been able to eat some of them, now and then, and get away with it, but that doesn't define a "safe" food, IMO. To this day, I wouldn't touch aspartame, (even though they offered it to me on jello, in the hospital). There are far too many people in the world who cannot handle aspartame - I simply can't accept/comprehend/visualize that it is safe for you to be using.

All sources of citric acid practically turned me inside out, while I was healing, but lemons and limes seemed especially bad. There is a possibility that even if you do not react specifically to them, they may have a synergistic effect with various other items, (similar to the effects of grapefruit). I can't believe that you would even consider eating them, (though I'm glad that you've at least stopped eating them, for the moment). The last morning that I was in the hospital, I noticed a cup of orange juice on my tray. I couldn't believe it. I carefully set it aside, of course, as if it were a cup of poison.

The D and the mouth sores are clear evidence that you are reacting to the basic elements of your diet, (IOW, regular contamination), but you are eating so many ingredients, that it would take a miracle to isolate the culprits, (I believe that there are several, maybe many). It's even possible that all these little "offenders" are innocuous individually, but able to trigger a constant reaction, (without Entocort), in combination. I realize that this may sound cruel and insensitive, (and I apologize if that is the case), but I've been watching you struggle with this issue for what seems like forever, and, (besides tearing my heart out, after watching this cycle play over, and over again), IMO, you are not making any progress, simply because you are trying too hard to retain variety, balanced diet, etc. You are overly concerned with making sure that nothing is "missing" from your diet, in one form or another. You don't want to "sacrifice", (I know that's putting it in a very inconsiderate form, but it's late, and my gut hurts, so I'll apologize, and go on).

Trust me, boredom, and lack of variety are the cobblestones that provide the foundation for a path back to remission, in difficult cases. I'll grant you, I'm looking at this from the viewpoint of someone who is not an ambitious eater, (as far as creativity, variety, and originality are concerned), but I tried it your way for a year and a half, and I finally caved in and settled on the most boring diet in the world, and quickly found remission, (of course, I didn't have Entocort to fall back on, so maybe I was more motivated). These days, I can eat pretty much anything I want, but it's a different world, once you finally acquire remission, and the rules of the game can change, for many of us.

IOW, what I'm trying to say, is, (pretty much what Polly said):

1. Be willing to sacrifice today, in trade for remission tomorrow.

2. Eat a very limited, unquestionably safe diet, (IOW, a limited paleo diet - not every paleo food out there, and certainly no foods that are not paleo, unless you are absolutely willing to bet your life, that they are safe for you).

3. Allow the gut sufficient time to properly heal.

4. Then try adding in some of that processed stuff that you are trying to eat now, and fine tune your eventual diet while enjoying the luxury of remission.

IOW, eat as though you are seeking remission, now, and then you will have the rest of your life to eat as though you are in remission, (because you will be).

Again, I apologize. I found it very difficult to write this post, because I don't want to hurt your feelings, and I'm almost positive that's what is going to happen, despite the best of intentions. But looking at the facts, I really feel that the complexity of your diet virtually guarantees failure, in the long run. Some members could probably get away with that approach, but you have far too many intolerances to be able to go that route, without Entocort, IMO. I believe that the combination of many small "offenders", (that may well be tolerable, individually), are sinking your digestive ship, collectively. And those "offenders" are "hidden" in all those processed foods.

I started to trash this post, many times, because I realize that I could be all wet, and all that I would accomplish, would be to hurt your feelings, with no gain, and that would hurt me, even more than you. On the other hand, if I can help to inspire you to get out of that vicious cycle, and start making some real progress, I feel it's worth the risk, so I guess I'm going to post it. So please read this with an open mind, and if you totally disagree with it, please let me know, and I will delete it.

I see that Matthew has "broken the ice", and is thinking along the same lines, so I'm going to post this, but my offer still stands - if you are offended by it, please let me know, and it will be deleted.

Love,
Tex

[Gloria]

Tex,

Let me first say that I know that you, Polly and Matthew only have my best interest at heart and none of you mean any ill will.

That said, I'm not hurt; irritated is a better word to describe my reaction. I think that I have sacrificed a great deal due to my numerous intolerances. I read Dee's recipes, which are great, but realize that can't eat many of them. Others write about Betty Crocker's cake mixes - I can't touch them. I'm not complaining, because I know that's the nature of this disease, but I do resent being told that I haven't been willing to sacrifice. My husband's and children's mouths would drop if I told them that someone thought that about me.

In defense of myself, I have followed the path of many others here, eliminating suspicious foods, getting normal BMs, reducing Entocort, and continuing to have normal BMs. Nothing in my treatment has led me to believe that I'm not doing enough to achieve remission. Each time I've relapsed, I've eliminated another category of foods. As you have made suggestions, I've followed them. I am still on an extremely low sugar intake, for example, as a result of your experience. It's been very hard to eat this way, but I've been determined to eliminate yet another category of suspicious foods.

I'm quite surprised that my list of processed foods seems excessive. For example, I remember you mentioning that Karen had to switch chocolate, due to the hidden lethicin. That implies that chocolate without lethicin is OK. Polly has mentioned that she uses broth and potato chips. Ant eats rice cakes, Dee eats rice pasta and the other baking products listed. I could go on, but you get the picture. Many others here eat the same, plus additional, processed foods that I've listed. I know that I'm different from others here, but I honestly didn't (and don't) think my list was way out of whack.

Because persons with double DQ1 genes have a much more difficult time achieving remission, we should recommend to everyone that they have the genetic testing done through Enterolab.

[Polly]

Hi Gloria,

I've been thinking about something that Wayne alluded to above. You know, it is perfectly acceptable to decide to continue with medication indefinitely, assuming your doc is in agreement. It has always been our policy here that "whatever works" is fine. I know some members here (Dee and Pegster come to mind, but there are others) have elected to continue with the medication route, and I haven't heard about any major problems from their approach. Are you dead set on eliminating the meds totally? If not, maybe you can find a happy medium between diet and meds. That way you may not have to make such a major lifestyle change like going paleo. I have learned not to underestimate the challenge of making a sweeping lifestyle change - and only the individual can make that determination.

You mentioned that your hubby is questioning whether your problems are food-related. I'm sure he must be as frustrated as you. Is he supportive in general? Is he interested in eating a different way, or is that difficult for him? I don't mean to be intrusive (you don't have to answer, of course), but one of the factors that makes paleo easier for me is that my hubby eats the same way as I now. I can't envision how difficult it would be if he still wanted to eat bread/baked goods, cheese, milk, etc. Just having them in the house would be tempting for me. Not to mention the extra trouble of cooking an entirely separate meal for him. I realize how lucky I am.......I don't think many family members could adapt the way he has. He even PREFERS rice pasta now!!!

Love,

Polly

P.S. It's the pits that you and I have so many more sensitivities than many. As a result, it takes us so much longer to achieve remission. UNFAIR!

[Syl]

Hi Gloria, hope things are going better for you, as you are sooo supportive of others, including me. A thought occurs to me, and what do I know, I'm relatively new to all this. I was in remission for the past three years, and now active again. You said you have had some normal stools and then D and it is a mystery as to why good then bad??? I have had this problem as well, and looking at the overall big picture of my life recently, I started a new blood pressure drug, Diltiazem, several months ago. I did not get any D from it, but a couple months down the road, the D started with a vengence. At the same time, my Bp went up and the pills were not keeping it down. The end of January the doctor upped the dosage half again, and shortly afterwards the D got MUCH worse. In the back of my mind I wondered if the D was caused by this drug. Granted, I have MC, but I have had it for years with not much problem, and I wonder if many others out there, untested, have it too. So thinking about your own story, are you taking other drugs which could have an impact on D? Seems once my body pushes this out, I feel pretty good. Then I take the Bp pill and it starts over again. Just a theory. I have been taking Pepto Bismol with some success, I thought, until about 4:00 this morning. Soooo, I am going to try to detox myself of all drugs today; flush everything out by drinking lots of water. I have a different Bp pill which I will use when this old one is out of my system, while carefully monitoring my Bp. The doctor and also the gastro poo pooed my questioning about the Diltiazem. There is only about a 2-3% incidence of D related to it, but who knows, maybe it's me! Anyhoooo, just throwing this out about taking other drugs that could be messing up your system; know that you are thought of kindly, Sylvia

[Gabes-Apg]

Hi Gloria

just wondering how you are doing? hope there is improvement as it is not long till your trip.