Hello, Hello, Hello!!

[Chocolate Rose]

I'm totally new here and am SO excited to have found others who are dealing with what I'm dealing with. This has been a completely humiliating life experience.
A few years ago, I started occasionally having unexplainable, uncontrollable, horrendous diarrhea. It would usually happen within 30 minutes to 1 1/2 hours after eating. I tried everything I could think of - dietary changes, increased probiotics, not eating, etc. I've always stayed away from drugs and medications so I didn't even consider taking anything else. Nothing I did helped.
Then, in March 2012 I was diagnosed as a type 2 diabetic. I immediately did some research and decided to try to get it under control through diet. I changed to a Low carb/high fat diet. I eat 30 grams of carbs a day or less. I don't eat wheat, gluten, grains, fruit, most vegetables, beans, potatoes, sugars, etc. My diet is primarily fat and protein.
At the time of my diagnosis my doctor did start me on Metformin. She told me to start it on a Friday as it may cause some intestinal issues but that it wouldn't happen the first day. Well, she was WRONG. Within a couple of hours of taking the Metformin I was running for the bathroom. I was at work. Not a good situation. I ended up having to go home to change clothes, went back to work, and then went home again as it just would not stop. Ever since then, I've had to deal with intestinal issues on an almost daily basis. I can't eat out. I can't go anywhere. I have what I call a low-grade cranky feeling in my intestines all the time, until it goes into overdrive and then I have horrible cramps. There is no rhyme or reason as to when it all happens. It doesn't matter what I eat, when I eat, or even if I eat. My body just dumps it all out over and over and over again. When it hits at work, I have to leave my desk constantly as it's not just a one time thing. I live in fear that it will hit when I'm in a meeting away from a bathroom. I've had to decline opportunities because I couldn't count on having a bathroom close by.
Anyway, at my doctor appointment yesterday, she said that what I am experiencing sounds like it is probably collagenous colitis and wants me to have a colonoscopy. So, I started researching last night and the symptoms sure seem to fit. I was excited to read about the pepto bismal suggestion. And, then, I found these boards!! Woo Hoo!! I'm so glad to have found you all!
On my way to work today, I stopped and picked up the pepto bismal. I took two right away and then 1 at my next meal and 1 with dinner. I'll take 1 more when I go to bed. I'm worried about becoming constipated by starting with the 8 a day right off the bat. Has anyone had issues with constipation with pepto bismal? I know it sounds silly to worry about constipation, but I've never taken PB before and don't know what to expect. This was the first day in a very LONG time that I didn't have the grumpy intestine thing going on. I made it through the whole day without any issues. I can't tell you how excited this makes me!! I'm already gluten free (for over a year), so I'm hoping that this next step works.

[JFR]

Welcome to the board. You have come to the right place. Most of us here have had similar experiences of humiliation and the need to plan our lives around the location of bathrooms. It isn't fun.

It sounds like you are following Dr Bernstein's Diabetes Solution. I have been eating that way for about a decade now, with occasional lapses where I have let carbs sneak back in but I always go back to the 30 grams of carb a day approach. I never got a diagnosis of diabetes but I knew that I was heading that way and with a history of diabetes in my family it seemed prudent to go low carb. I know that metformin is known to cause intestinal problems. Are you still taking it? is it possible for you to control the diabetes on diet alone?

As far as MC goes, we also have/had similar symptoms. At my worst I was running to the bathroom 15-30 minutes after eating anything and often every 15 minutes after that. The only thing that seemed to stop it was 6-8 immodium but only until I ate again. A year ago I was pretty much housebound. Then I found this board, learned about Enterolab testing for food sensitivities and what mast cell problems were. The quick D response to food is the hallmark of mast cell problems. I immediately stopped eating gluten, diary, soy and eggs, the 4 most common food offenders, and removed high histamine foods from my diet as well to control the mast cell issues. These changes really helped pretty quickly. Then I had the Enterolab testing done and found that gluten, dairy, soy and eggs were all problems along with a number of other foods. I have stuck with this very restricted diet since that time, although recently I have let more high histamine foods sneak in and things have gone downhill some but never to the point I was at when I joined. I am now avoiding high histamine foods again.

Pepto never really worked for me so I can't comment much on it. I do know that it is at best a temporary fix and ought to be used in conjunction with the food restrictions for real healing to take place. Otherwise once you stop the pepto things will most likely go back to how they were before you started taking it.

Jean

[Jazi]

Hello and welcome!!

I have Lymphocytic colitis. I don't know if there's a difference between that and Collagenous colitis. I've been on this board for about a month now and these people are so helpful. They're like a bunch of angels.

My D was never as bad as what you've described and I'm so sorry that you had to endure that. My main complaint was bloating and abdominal pain... plenty of D but for the most part, I was able to control it.

I am on my 5th week of Entocort which has helped with the frequency but I still have D. I am still going through a trial and error with food... just the last two days I have felt so much better decreasing my grain intake, I was still having corn and rice. Now I'm mostly protein and fat. The worst part (for me) is now I have to cook!!! Which means I have to do dishes too!!

I will soon be doing testing at Enterolab, I'm so excited! It will definitely help with the trial and error.

Good luck to you!!!

[tex]

Hi C. Rose,

Welcome to our internet family. My symptoms started the same way as yours, with occasional episodes for 2 or 3 years, and then one day the D started and wouldn't stop.

With your existing diet changes, you are off to a good start for long-term control, and you probably just need to fine-tune your diet a bit. As Jean mentioned, soy is a problem for many of us, and it shows up in a lot of unexpected places, such as soy lecithins that are used in chocolate and a zillion other foods. It's also commonly used in both prescription medications and OTC meds and supplements. Contrary to the claims of most medical and industry "experts", most of us who are sensitive to soy do indeed react to soy lecithin and soy oil.

We also tend to react to any sources of casein (the primary protein in all dairy products), and even though the "experts" claim that the pharmaceutical grade lactose used in many medications is free of casein, we still react to it, so we have to be very careful with medications and supplements.

And as Jean suggested, inappropriate mast cell degranulation, known as mast cell activation disorder (MACD) seems to be a common problem with this disease, and it helps to perpetuate the inflammation. Most physicians are totally unaware of the mast cell connection with MC, so we're pretty much on our own with this issue. But to cut to the chase, many of us have found that when we are doing everything right, and still are unable to reach remission, avoiding high-histamine foods and foods that trigger histamine release, and taking one or more antihistamines daily, can sometimes help to quickly end a flare.

And for most of us, stress is a major trigger for the inflammation that causes the disease. Since the symptoms of MC are so stressful, that tends to make the disease pretty much self-perpetuating, unfortunately. IOW, it behooves us to make a serious effort to limit the amount of stress in our lives, especially during a flare.

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

Tex

[Chocolate Rose]

Hi Jean,
Yes, I do follow Bernstein! It's nice that you know about his woe. I'm going to cry, though, if I have to give up dairy and eggs. That would just leave me with meat and coconut or olive oil. At this time, I'm still working to control my sugar levels so I'm hoping I don't have to give up the metformin. But, my dr has mentioned that I could take gliburide instead. There are other issues with gliburide and I'm hoping not to have to make the switch.
It sounds like I need to do some research on mast cells. Is there a list somewhere with the high histamine foods? I'm so glad to hear that you've been able to control this through diet. It gives me hope.

[Chocolate Rose]

Thanks for the welcome, Joanne! I'm not sure about the differences in the two colitis, either. Heck, I'd never heard of the form she thinks I have until Friday. Glad to hear yours isn't as bad. When I was first diagnosed with diabetes, one of my first concerns was that I wouldn't be able to cook anymore. I've always loved to cook and try new recipes. But, I found a ton of lc and lchf blogs and have continued to cook. But, now, after seeing that most people have to also give up eggs and dairy, I'm thinking I may really have to give up cooking. It makes me sad. But, I'm with you on the doing dishes.
I found that it was easier to give up all carbs (including grains) and go cold turkey rather than trying to wean my way off of them. I went through a couple of days of withdrawal, and then no more cravings.

[Chocolate Rose]

Hi Tex,
Wow, it's just amazing to find people with pretty much my exact same experience. I really thought that my situation was an isolated kind of thing and for the most part, I was too embarrassed to really bring it up.
I do avoid soy. But, I eat 90% cacao chocolate and never even thought about the possibility of it having soy. I'll need to check my package and see. Holy cow, I can't give up chocolate, too!! Please don't let there be soy in it!
I do eat quite a bit of dairy, as the fat in it helps to offset the no carbs for energy with my woe. I primarily use heavy cream, cheese and butter. I buy the cream by the half gallon at Costco, to give you an idea of how much I use. But, when this first started, before being diagnosed with diabetes, my first thought was that I had developed a dairy allergy. At that time, I didn't eat a lot of dairy - occasional yogurt and cheese but no milk, butter or cream. I gave up dairy for a few weeks. It didn't change anything for me. So, I resumed eating dairy, again without any change to the D. Do you think that that would have been a long enough trial period or could dairy still be a problem?
I'll do the reading on mast cells and histamine foods.
I also thought that this was due to stress. But, it didn't seem to matter how stressful things were, the D was just there. I'm sure, as you say, stress does play a part, but I haven't figured it out for me, yet.
Thanks for sharing all of the information!

[Chocolate Rose]

I just went and checked my chocolate. The Ghirardelli and Trader Joe's brands do have soy lecithin. But, my favorite, Green & Black, doesn't! I can only have a small square a day, but it's such a treat that I'm SO VERY happy I can still have that.

[Leah]

Welcome CRose.

You have gotten a lot of good advise so far. Tex is our expert and has written a book ( which is in the upper right hand corner of this page). You might want to buy it and read it cover to cover. it's full of great info.

Dairy is a big offender for me. The thing about food intolerances, is that if you don't know for sure, it's hard to test whether you are reacting when you are still at your worst because you are probably reacting to many things at once. I gave up gluten and dairy first, but didn't notice my soy reaction until many months late when i was feeling better and then ate something with a good amount of soy. I never had to give up eggs. the other problem with some dairy is the lactose ( sugar). When our guts are inflamed, we don't produce enough enzymes to break down and absorb the sugar in our small intestine , so it then goes into the large ( where it's not suppose to be) and ferments.

Many of us are able to eat well cooked vegetables. You might want to try test a few to add to your diet. Carrots and squash seem to work for many of us. I have always been able to eat all cooked veggies ( start with a small quantity)

When it comes to the drugs that seem to help us, Pepto is one of them. I used Entocort for about six months and haven't needed anything since. From what I have read from people here, is that they start with the 8 tabs a day and just adjust the dose if they get C. There is a time limit on how long you can be on it though. The goal is to slowly wean off within 3 months.

If you have the money, yo might want to check out the Enterolab tests. it is a surefire shortcut to knowing what your major food intolerances are. Some people find out that certain meats even give them problems.

You didn't say whether you are going to do the colonoscopy with biopsies or not, but you should to get a definite dx.

good luck and keep us posted
Leah

[tex]

Here is a site that lists high histamine foods, and foods that trigger the release of histamine:

http://www.michiganallergy.com/food_and_histamine.shtml

Not every one of us is sensitive to casein and/or soy, but a high percentage of us are. As Leah mentioned, test results from EnteroLab can remove all doubt. For some of us, it can take from 6 months to a year to stop reacting to gluten after we remove it from our diet, and that can confound other trial and error diet testing. After we have avoided gluten for over a year, then it is much easier to test for other food sensitivities by trial and error methods.

Tex

[Chocolate Rose]

Hi Leah,
Thanks for your response. I had just put the book in my Amazon cart when I saw your post. It may be a couple of weeks before I can actually order it, but I'm looking forward to reading it.
I'm still hoping I won't have to give up dairy, but it's sounding more and more like I will. I do take food enzymes with meals. Do you know if there is any success with that and continuing to eat dairy?
As far as the vegetables, I am limited on those by being diabetic. Squash and carrots are definitely a no-no. I do eat a few veggies occasionally (broccoli, cucumbers, green beans, lettuce, cauliflower), but really limit them as my first priority has been lowering my blood sugar through diet.
I am really hopeful about the pepto bismal. When my dr was telling me about this disease she did say that it wasn't curable but was treatable and then mentioned some drug. That could have been Entocort, but I was just so blown away by her thoughts, that I just don't remember.
I have been reading the posts about Enterolab tests and went to the site. But, for right now, they're out of the question as dh is unemployed. Maybe sometime later, though.
I know I need to do the colonoscopy, but I'm not jumping in right away. I asked about the prep drinks and the fact that I can't take anything with sugar and am also worried about getting that much fluid down. My dr said I may have to choose between volume and sugar. I'm planning on calling this week to see what my options are. Then, if it's a go, I'll have to probably wait til at least June. But, we'll see...

[Chocolate Rose]

Here is a site that lists high histamine foods, and foods that trigger the release of histamine:

http://www.michiganallergy.com/food_and_histamine.shtml

Not every one of us is sensitive to casein and/or soy, but a high percentage of us are. As Leah mentioned, test results from EnteroLab can remove all doubt. For some of us, it can take from 6 months to a year to stop reacting to gluten after we remove it from our diet, and that can confound other trial and error diet testing. After we have avoided gluten for over a year, then it is much easier to test for other food sensitivities by trial and error methods.

Tex

Tex, thanks for the histamine foods. I can see my diet is becoming narrower and narrower. Yikes!
I had no idea that it would take that long to stop reacting. I was thinking a week at the most. But, then that's what I initially thought about lowering blood sugar, too.
I really appreciate you guys taking the time to fill me in!

[JFR]

Hi Jean,
Yes, I do follow Bernstein! It's nice that you know about his woe. I'm going to cry, though, if I have to give up dairy and eggs. That would just leave me with meat and coconut or olive oil. At this time, I'm still working to control my sugar levels so I'm hoping I don't have to give up the metformin. But, my dr has mentioned that I could take gliburide instead. There are other issues with gliburide and I'm hoping not to have to make the switch.
It sounds like I need to do some research on mast cells. Is there a list somewhere with the high histamine foods? I'm so glad to hear that you've been able to control this through diet. It gives me hope.

I used to have eggs every morning for breakfast and homemade yogurt every afternoon. I do miss them but for me giving them up was well worth it. Just think about a life without adult diapers and constant bathroom trips. I also follow Bernstein and eat primarily meat, greens, and olive oil or coconut oil. I also eat small amounts of nut butter and a 1/4 cup of blueberries every morning.. It can be done. When I start craving something that I no longer can eat I tell myself that I am not my cravings and that cravings generally only last about 20 minutes and then disappear, so sitting them out is entirely possible.

I just found this list of high histamine foods and foods that liberate histamine the other day. It seems to be the most comprehensive I have come across. There certainly is not total consistency on all the various lists that are out there, so some playing around is necessary.

http://www.histaminintoleranz.ch/en/dow ... st_HIT.pdf

I try not to look at how I eat as a deprivation but a gift I give myself in order to foster good health. I have even come to believe it.

You seem to be on the right path. It is a lot of nutritional balls to juggle but in time you will be able to figure it out.

Jean

[tex]

I had no idea that it would take that long to stop reacting. I was thinking a week at the most.

Some people are lucky, and they do respond that quickly. It may depend on how long we have been reacting, because the longer we react before avoiding gluten, the higher the antibody levels climb.

Please don't feel that the EntroLab tests are necessary, because many members here have been able to track down their food sensitivities without using those tests. Some people feel that laboratory confirmation is necessary before they are willing to make long-term (or permanent) diet changes, but people who are disciplined can do without the tests. You seem to be quite disciplined and dedicated, so you should be able to stick to your diet based on trial and error results. Also, those tests are based on IgA-based ELISA testing methods, and so anyone who has selective IgA deficiency will receive false negative test results, meaning that the tests are worthless for them. About 1 in 300 people in the general population have selective IgA deficiency. We have a number of members who have IgA deficiency, and for them, the classic blood tests used for celiac screening will always show false negative results, also.

And while an official diagnosis of MC (or celiac disease, or whatever) is nice, it's certainly not absolutely necessary for treating the disease, because the only safe and effective long-term treatment is diet changes, and most GI docs still claim that diet has nothing to do with MC, so a diagnosis is only helpful if you want a drug prescription to help control your symptoms while the diet changes are allowing your intestines to heal.

Tex

[Chocolate Rose]

Jean, thanks for your positive advice. I think I'm still in the overwhelmed shock stage. I thought I was done giving up foods and was doing what I could to maintain. I'll get over it once I get a grip on what I can actually eat. Thanks for the histamine list that you found!