Hello everyone & so so thirsty.

[chellebelle]

Hi everyone. I lurked here on and off for a few weeks when searches on my symptoms kept turning up this forum. I still need to sift through a lot of the information available here. My microscopic colitis crept up on me with increasing incidences of watery diarrhea, "shaky tummy" & various "quirky" little things over a few years. First, I couldn't eat greens I'd not had in a while without the runs. Well, long before that I had lactose intolerance, but that was easily dealt with, and I was on a nearly-paleo-by-default due to food allergies organic diet as of late 2009. Then it was no eating salad or watery foods, or really much food at all, while at work. Chocolate and hard, raw cheese were safe snacks, perhaps one piece of fruit, but that was it, or I'd need to go home. In a pinch, I'd eat millet puffs to soak up the excess liquid & remain at work. Then it was no water or tea with salad, then no water or tea with vegetables. Then I could eat less and less vegetables. For me, it was a clear issue of water content. I started to get a feel for what would set off the watery diarrhea of doom. I realized a few months ago that I'd had diarrhea 5-7 days of each week for over 6 months. Whoa!

So now, ok, I have learned that if I eat something very, very dry in a meal, such as plantains cooked into super dry crunchy tostones or very dry chicken breast, I can have some veggies with that meal and, if I keep the veggie portion small, a few sips of water or tea. Hot tea on an empty stomach is ok, but not if I had a salad the night before. I can drink a homemade electrolyte beverage (1 liter of water + 1/2 tsp each potassium gluconate and sea salt) while working out or on an empty stomach - very empty, at least 5-6 hours after a meal. Sparkling beverages like seltzer are handled easier, less likely to trigger the runs.

Otherwise, I am just thirsty. All the time. You don't know how much I envy people who can just guzzle a big glass of water. I don't think I am in super danger due to dehydration, but I would classify myself as being mildly dehydrated most of the time. My limit seems to be 1-2 cups of liquid, plus water I drink while exercising, but I sweat that right out! The diarrhea is bad, but the main thing it seems to do which hurts me is electrolyte imbalance & dehydration.

If I drink liquids, I will get diarrhea and end up even more thirsty, so I just suffer, dreaming of a time when I could drink glasses and bottles of water freely.

I am working on this plantain tortilla recipe as I am allergic to most other starches & I am hoping an oil free green plantain vehicle would allow me to drink a little more water. It's all about the dry:wet ratio in my body. Sigh.

Does anyone else have this problem? What have you done to cope with it? I would appreciate any advice or suggestions! Thank you.

[Lilja]

Hi,

I guess you will receive more wise comments from others here, but diabetes is my first thought when people are extremely thirsty.

I use your electrolyte beverage, but I also add a tiny bit raw, unrefined sugar (sugar that has not been bleached or anti-lump treated).

Lilja

[Hopeful]

You've probably already thought of this, but could the water be contaminated? Are you always using water from the same source?
While visiting my father-in-law in GA (senior living) I noticed on 2 different visits that I get constant D while I'm there. It finally dawned on me and I drank bottled water from then on. D cured instantly...

[chellebelle]

Hi Lija,

I am diabetic, but my blood sugar levels are normal. I was not thirsty like this prior to having diarrhea because I used to drink 1-3 liters of water per day. Now, I can drink at most 16oz of water per day, not including the electrolyte beverage I drink during exercise, which is just enough to balance me out. If I drink more than that, I get diarrhea for hours/days, and then become even more dehydrated, so I just have to deal most of the time.

Hopeful, I have had the same issue regardless of the source of water, from Virginia to New York. Thank you both for the suggestions, I appreciate the responses!

[tex]

Hi,

Welcome to the discussion board. If you were drinking plenty of water, I would agree with Lilja, that it could be due to diabetes. But since you are semi-starving yourself for water, it's pretty clear that you are dehydrated, and that's a dangerous game to play with your health at stake. Here's why:

The type of diarrhea that you are experiencing is common (predominant) with MC, and it's known as secretory diarrhea. Secretory diarrhea is caused by an excessive amount of unabsorbed electrolytes in the fecal stream (due to inflammation in the small intestine that causes malabsorption issues). When this reaches the colon, it prompts the colon to secrete water and electrolytes into the lumen (the interior of the bowel). This is of course just the opposite of the colon's normal function (normally, the colon absorbs water and electrolytes from the fecal stream) and this can result in a massive volume of stool. It also tends to promote a state of dehydration.

Trust me, ignoring your body's pleas for water is not a safe method for controlling MC. The reason is because as long as any free (available) water remains in your body, secretory diarrhea will continue. We don't have to eat or drink anything to promote secretory diarrhea — it will continue until our body is effectively (totally) out of water, and that is a very dangerous condition. If you don't believe me, ask your doctor. And that's why starving our body for water is not an option for controlling diarrhea when we have MC.

Short-term dehydration is bad enough, but chronic dehydration can lead to serious problems. When the body is starved for water and electrolytes, the heart and many other organs cannot function properly, so the stress level may escalate exponentially. And when one vital organ is stressed, that stress cascades to other organs. Hormone production tends to become imbalanced, and this can lead to other (seemingly-unrelated) problems that can result in either malfunction or damage to vital organs. This is one of the reasons why we are approximately 7 times as likely as someone in the general population to have thyroid problems. It's also likely to be a contributing factor in the association of gallbladder disease with MC, pancreatitis, and various other problems that can develop.

Stress alone is sufficient to drive MC and perpetuate the symptoms, even if we are doing everything else right. So imposing stress on vital organs is counterproductive. Dehydration itself can cause or perpetuate diarrhea.

If you have been dehydrated for a while, then you are probably deficient in potassium, magnesium, vitamin B-12, B-9, and B-6, and vitamin D. All of these deficiencies result in additional problems, since potassium and magnesium are vital electrolytes (vital for heart function and cardiovascular regulation), and the B vitamins are vital for proper neurological functioning. An adequate amount of vitamin D is essential for proper functioning of our immune system (and this includes the potential for healing).

So please start drinking water again, for the sake of your health. The way to stop the diarrhea is by avoiding the foods that are irritating your gut. Foods that cause the production of antibodies that lead to autoimmune reactions are not the only dietary problem with MC. There are various foods that have to be either avoided or eaten in limited amounts simply because we cannot handle them well while our intestines are hyper-inflamed. These foods tend to irritate the delicate mucosal surface of our intestines, and prevent healing. As long as we continue to eat them (or eat too much of them), our intestines are not able to heal, and so we cannot attain remission.

Such foods include fiber (as in fruits and vegetables, and some grains), citric acid (fruits), sugar (especially fructose — many fruits are loaded with fructose, and sugar alcohols such as the sorbitol found in many fruits), artificial sweeteners (virtually all of us react to most artificial sweeteners), spicy seasonings, and foods that are high in histamines (such as fermented foods). Usually, we are able to add most of these (irritating) foods back into our diet after we have been in remission long enough to allow significant healing. Please be aware that raw vegetables and fruit are especially inflammatory, and iceberg lettuce is probably the worst.

That said, most of us can eat small servings of certain vegetables (such as squash, carrots, cauliflower, etc., if they are peeled to remove most of the fiber, and over-cooked, to make them easier to digest). Small servings of peeled, over-cooked fruits can sometimes be tolerated, also. In general, the only raw fruit or vegetable that many of us are able to tolerate is banana, and it's a good source of potassium. But not everyone here can tolerate bananas, unfortunately. We each have to work out our own safe diet, based on our body's needs and tolerances.

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

Tex

[chellebelle]

Hi Tex,

Thank you for your long and informative reply! I appreciate your time very much.

I am in the process of trying to find a knowledgeable set of doctors, as I am in a new area.

I test my blood sugar several times per day, and my fasting glucose is between 88 & 92, and my postprandial glucose is never over 120; I have very tight blood sugar control with diet and exercise (type II diabetes), so it's never high enough to cause increased urination/excess thirst, which comes from high blood glucose levels.

I do feel like I am semi-starving myself for water - that is a perfect way to describe it. I didn't realize this type of diarrhea was due to unabsorbed electrolytes, but that makes perfect sense because often I will get leg or other muscle cramps hours before I have even made that first trip to the bathroom, so I have learned that is a warning sign.

I have hypothyroidism, so that is interesting. I've had a mild version of my current MC symptoms for years, but didn't realize it until it got worse.

I am allergic to grains, legumes, nuts, seeds, eggs, crustaceans, potatoes & nutritional yeast, so I don't eat any of those, and I recently tried an AIP diet & discovered I do better without peppers and tomatoes. That doesn't leave much to eat as it is, so the thought of more food restrictions is upsetting. I seem to have the same problems with cooked and raw veggies, with certain veggies being tolerated better, ie kale is much better tolerated than lettuce. The salads I eat are usually kale or dandelion greens, and I must have them with something very dry. I will try to mentally prepare myself for doing what you suggest to bring my body into remission. I don't eat anything artificial, no preservatives, all natural foods for over 15 years now. The difficult thing will be trading raw fruits & veggies for overcooked ones. :-( That is just depressing to me. Being as I am an "allergic girl" according to my doctor, cutting out histamines makes sense.

How long on average do folks take to go into remission?

Thank you again for your time & the information. I think I will try doing what I used to do as a kid when I was sick (which was a lot) and keep a bottle of my electrolyte beverage for sipping, a tablespoon every ten minutes is what my mom used to have me do. If it worked when I was extremely ill, maybe it will work now. That would at least be an extra 30-40 ounces a day.

Best wishes,

Michele

[tex]

How long on average do folks take to go into remission?

That's the 64 dollar question. The answer depends on a lot of things, especially how long we have been reacting, and whether or not we are already avoiding gluten (because anti-gliadin antibodies have a 120-day half-life, so it takes a long time to get them out of our system, so that our immune system can begin to settle down. By contrast, the half-life of antibodies associated with most other food sensitivities is in the vicinity of approximately 6 days. IOW, if you have been avoiding gluten for at least 6 months or more, then it's possible that you could respond relatively quickly to the removal of other food sensitivities (or irritating foods) from your diet.

The difficult thing will be trading raw fruits & veggies for overcooked ones. :-( That is just depressing to me.

I hear you. But fortunately, most of us are able to resume eating virtually all of those raw vegetables and fruits after a few months or so of healing (IOW, not immediately, but after we have been in remission for a while). If we start with small helpings, and slowly increase the volume, eventually we will be able to add a lot of our favorite foods back into our diet — but not gluten, dairy, or any other foods that actually cause our immune system to produce antibodies.

Each of us has our own threshold at which the total accumulated amount of ingested histamine will trigger a reaction. Below that threshold we are fine, but if we exceed it, a mast cell reaction is triggered, and this immediately boosts the inflammation status of the digestive system. It's often described as similar to filling a bucket until it overflows. This doesn't mean that we have to absolutely avoid all high-histamine foods. It just means that we have to limit the amount of those foods that we ingest over some arbitrary period of time. Many people have a very high threshold, and they rarely have to be concerned about histamines. But while MC is active, many of us seem to be very sensitive to histamines, so it behooves us to take histamines into consideration in our treatment program.

For many of us (especially those who have been meticulously careful with their diet, but are still unable to achieve remission) it appears that a condition known as mast cell activation disorder (MCAD), and the associated histamine release, can cause the same effect as too much histamine in the diet. So in many/most cases, we have to pay attention to both, because the combination may be what is preventing us from achieving remission from MC.

Looking at your list of food sensitivities, I note that all but a couple of them are considered to be high-histamine foods. The bad news is that chocolate is also a high-histamine food. You might find it helpful to read some background information on how mast cells are associated with microscopic colitis (for many of us):

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

This may or may not apply to you, but if you happen to be following a vegetarian lifestyle, there is another problem. Most of us are sensitive to soy and all legumes, and that cuts out some prime sources of protein. Again, this might not apply to you, but at least several of us have found that we react even more severely to soy than we do to gluten.

Several members here, who had many, many food sensitivities, were able to recover by eating nothing but 1 safe meat, or meat and maybe 1 or 2 well-cooked veggies, until their digestive system healed enough that they could digest other foods again.

I'm well acquainted with dehydration, because I have an ileostomy, which means that I no longer have a colon to recycle water. I have found that I have to be very careful, because I can easily become dehydrated without even being aware of it, especially if/when I perspire more than usual (or if something should trigger an MC reaction, resulting in watery D). If I don't drink enough water, I will wake up during the night with severe leg or food cramps. And of course electrolyte deficiencies (especially magnesium) are probably the most common cause of leg/foot cramps at night.

Another way to detect a dehydration problem is by blood pressure monitoring. Dehydration causes hypovolemia (lowered blood volume), and this typically lowers blood pressure. IOW, if your blood pressure is abnormally (for you) low, you are probably dehydrated. If hypovolemia is allowed to go too far, it can lead to hypovolemic shock, which is a life-threatening situation. IOW, it can have an effect similar to bleeding to death, even though no bleeding is involved. This is why the mention of trying to control MC symptoms by withholding water makes me very uneasy.

Yes, sipping an electrolyte solution during the day sounds like a very good idea. Many of us also do better by eating numerous smaller meals or snacks during the day, rather than 2 or 3 large meals.

But whatever we have to do to achieve remission is worth it, because the sooner we are in remission, the sooner we can begin to digest food normally again, and absorb the nutrients in those foods, and most importantly, the sooner our digestive system can heal. And that means that with improved digestion, we can slowly bring our diet back into balance, and eventually, we will get our life back. Not only can we be healthy again, but we typically become healthier than ever, because the foods that are toxic for us are no longer a part of our diet.

Tex

[dfpowell]

Michelle,

Welcome to the forum!
Regarding exercise, when having a significant flare with MC, a high level of exercise can be stressful on your body and increase MC symptoms. Also, if you are having hydration issues you may want to keep your exercise at a less intense level until you can get your MC symptoms and hydration improved.

Figuring out what triggers MC can be challenging and it is different for everyone, however, keeping a journal can be useful in monitoring your nutrient intake and finding what is triggering your MC.

[chellebelle]

Hi there.

I haven't had gluten since 2009, and back then, it was very limited quantities for a couple years prior. Other than millet, I was grain/legume free since then also, but I cut out millet in 2012. Hopefully you're right, and this won't take long! Thanks. :)

I was a vegetarian for over 10 years. It only worsened my health, but I became very healthy being a raw foodist in 1999-2001, but had to go back to cooked foods to due seed/nut allergies which developed. I was dairy free for over 10 years, but started eating dairy again the form of 24 hours yogurt & hard cheese in 2008; I have since cut out dairy for up to 6 months but with no alleviation of any symptoms. The forms I eat seem to be fine. I don't mind eliminating it for a while again to see if it helps, but based on my past experience, I would be surprised. I do eat grass fed & organic beef, chicken, turkey, pork & wild fish, all of which are safe foods for me, which to me says the universe has a great sense of humor, as I wanted to be a vegetarian from age 3, LOL.

That is interesting about the half-life of antibodies. So much great information! I read about the histamine issues a while back, but I was like, "Oh no, not something else!" and just let it be for a while. I seem to always be restricting my diet more and more. I have recovered from many health issues, but currently, the MC, along with migraines, is what I need to manage.

I'm sorry to hear about your ileostomy! I also have the issues of waking in the night with cramps & make sure to have the electrolyte beverage nearby at all times. Water alone only makes it worse. When my cat died in October, I cried so much I started having muscle spasms all over my body, pretty pitiful. So I learned to keep the electrolyte mixture ready.

I definitely need to find a good doctor who understands MC. I moved to a small town and am kind of lost, medical-wise. The hypovolemia concern is something I wasn't thinking about, so thank you for bringing that up. I used to be a grazer, and did better then - I might try to go back to that. I think I stopped because eating triggered the runs, so I started only eating once a day to get things done. I have a blood pressure monitor, I will whip that out & use it again. I definitely feel mild-moderate dehydration symptoms on a regular basis, so I agree this method of control is unhealthy.

I just started reading over the mast cell information, and the IgE-based reactions are something I know well, as all of my mild food allergies (nuts, sunflower seeds, eggs, coconut, tapioca) cause those. Interesting! I am going to read all this today.

Nooooooooooo, not chocolate. :-( I eat 85%-90% dark chocolate, so awesome. But I have gone chocolate free for months and months, with no remission from any symptoms (migraines, MC), so I am hoping that is not the problem, LOL.

You're right, of course, about remission. I have done the elimination diets many times in the past. Hopefully, this will be the last time! I can dream!

Thank you, Tex, for all these links and information. It was a bit overwhelming, all the information out there and on this site, so it's great to have a place to start!

Best wishes,

Michele

[chellebelle]

Michelle,

Welcome to the forum!
Regarding exercise, when having a significant flare with MC, a high level of exercise can be stressful on your body and increase MC symptoms. Also, if you are having hydration issues you may want to keep your exercise at a less intense level until you can get your MC symptoms and hydration improved.

Figuring out what triggers MC can be challenging and it is different for everyone, however, keeping a journal can be useful in monitoring your nutrient intake and finding what is triggering your MC.

Hi Donna, thanks for the advice! I do the exercise to keep my blood sugar down, but if I am having a bad flare or dehydration, I get on my arc trainer and go slowly, with my heart rate around 98-105, which allows me to burn calories without sweating much. It takes forever to burn all the carbs to keep my blood sugar in check, but it works. I have found that the only time my body is great at absorbing liquid & not sending it out the back door is during exercise, and let me say it is such a relief at that time just to be able to drink.

I have started keeping a food journal for the new year, so I will add in there my MC symptoms. Thank you for the advice!

[tex]

You're right, of course, about remission. I have done the elimination diets many times in the past.

Here's the problem with elimination diets. Every possible allergen must be avoided at the same in order to see beneficial results, because with MC it seems that if we miss a single food sensitivity (IOW, if we do not eliminate all of them from our diet, at the same time), we will continue to react, so it becomes very difficult (if not impossible) to detect any improvement when we test various foods). This is almost a Catch 22 situation because of the fact that we have to be in remission in order to test foods for possible reactions, but if we are in remission, then we must already have a pretty good idea of which foods cause us to react. But the point is, if we are not in remission, then it's almost impossible to reliably and repeatably detect any changes in our condition as a result of adding or removing any "test" food from our diet. If all reactions were immediate (IgE-based reactions), it would be much easier. But unfortunately the primary reactions are IgA-based, and IgA reactions typically occur hours later, and even days later.

Back in the dark ages, when I was still trying to recover my life (after my GI doc told me that there was nothing he could do for me), it took me about a year for the gravity of my situation to sink in, and for me to realize that such serious digestive system problems are bound to be due to something in my diet (contrary to my doctor's claims). I cut out gluten, started a food and reaction diary, and then started experimenting with trials that eliminated other foods from my diet.

But when avoiding a food didn't help, I always made the mistake of adding it back into my diet. After a year and a half of experimenting with various diet trials, the problem with my method finally dawned on me. Once I saw the light (and cut every suspicious food in my food and reaction diary out of my diet, at the same time) within 2 weeks I was in remission. IOW, we have to either get it right, or make lucky guesses at the foods utilized in our elimination diet, or we are jinxed from the start. And unfortunately, many of us guess wrong (because we are all different, so using a diet that worked for someone else, may not work for us). For example, it is surprising how many of us are sensitive to beef and chicken. The safest meats (IOW, meats that the fewest members here react to) are turkey and lamb.

Your choice of chocolates is wise, because those higher-percentage chocolates are often soy-free. That leaves histamine as the only possible issue. IOW, you might have to limit the amount of those chocolates that you eat, but not totally avoid them. So that's a plus.

If you are able to locate a doctor who actually understands this disease (and how to treat it properly), please share her or his name with us, so that we can add her or him to our list of qualified physicians who understand MC and can successfully treat it. Unfortunately they are as scarce as hens teeth, especially when mast cell issues are added to the mix of symptoms and triggers.

Please don't let us rush you, or overwhelm you with information, because this is a very complex disease, there is a tremendous amount of information available here after so many members have been sharing information on MC for almost 10 years (our 10-year anniversary will be in May), and it takes time to sort out all the information that is irrelevant to our own situation, and absorb the information that may be useful. If it were easy, GI specialists could do it.

You're very welcome, and please don't hesitate to ask questions anytime you're not sure about something. There are no dumb questions concerning MC, and unlike so many closed-minded GI specialists, most of us here learn something new in virtually every discussion.

Tex

[Skyward]

Hey Chelle- I just wanted to add my personal experience in regards to your how long question (of course everyone's experience is different) I had to take a drug free/diet only approach because I had a bad reaction to Budesonide. I started a very strict elimination diet in mid-november and just in the past week I am starting to see some improvements in the toilet- (6 or 7 weeks?) ... now I'm a long way from remission- but what I'm saying is that even if a person might be able to eat a trigger food and go running to the toilet in the next hour- simply avoiding the trigger food isn't going to mean you are healed the very next day... in fact you might have to keep up with it long after you have started to despair that it's worth it at all. I but have experienced several other positive effects in other areas that I hadn't realised were connected to my diet- and those changes did come about rather soon- so at least I did have some evidence that my body was reacting in a negative way to some of the foods I was eating. I am eager to start reintroducing foods but am going to take it VERY slowly. I also keep a detailed diary of everything I eat and vitals and how I'm feeling, as well as things going on that day.

So glad you found your way here - I hope this forum will prove as helpful to you as it has been for me!

[chellebelle]

Hey Chelle- I just wanted to add my personal experience in regards to your how long question (of course everyone's experience is different) I had to take a drug free/diet only approach because I had a bad reaction to Budesonide. I started a very strict elimination diet in mid-november and just in the past week I am starting to see some improvements in the toilet- (6 or 7 weeks?) ... now I'm a long way from remission- but what I'm saying is that even if a person might be able to eat a trigger food and go running to the toilet in the next hour- simply avoiding the trigger food isn't going to mean you are healed the very next day... in fact you might have to keep up with it long after you have started to despair that it's worth it at all. I but have experienced several other positive effects in other areas that I hadn't realised were connected to my diet- and those changes did come about rather soon- so at least I did have some evidence that my body was reacting in a negative way to some of the foods I was eating. I am eager to start reintroducing foods but am going to take it VERY slowly. I also keep a detailed diary of everything I eat and vitals and how I'm feeling, as well as things going on that day.

So glad you found your way here - I hope this forum will prove as helpful to you as it has been for me!

Hello Skyward, thank you for sharing your experience with me. I guess it's difficult because, in the past, any time I cut out an offending food, I saw immediate improvement. Eczema started clearing up within days of removing allergenic foods, same with asthma, ear issues I had, chronic bronchitis and a bunch of other issues. I've never has an issue take weeks or months to clear with elimination of foods. I guess MC is different? I appreciate your reply & am feeling a bit better about doing an elimination diet soon to get in remission. :)

[chellebelle]

You're right, of course, about remission. I have done the elimination diets many times in the past.

Here's the problem with elimination diets. Every possible allergen must be avoided at the same in order to see beneficial results, because with MC it seems that if we miss a single food sensitivity (IOW, if we do not eliminate all of them from our diet, at the same time), we will continue to react, so it becomes very difficult (if not impossible) to detect any improvement when we test various foods). This is almost a Catch 22 situation because of the fact that we have to be in remission in order to test foods for possible reactions, but if we are in remission, then we must already have a pretty good idea of which foods cause us to react. But the point is, if we are not in remission, then it's almost impossible to reliably and repeatably detect any changes in our condition as a result of adding or removing any "test" food from our diet. If all reactions were immediate (IgE-based reactions), it would be much easier. But unfortunately the primary reactions are IgA-based, and IgA reactions typically occur hours later, and even days later.

Back in the dark ages, when I was still trying to recover my life (after my GI doc told me that there was nothing he could do for me), it took me about a year for the gravity of my situation to sink in, and for me to realize that such serious digestive system problems are bound to be due to something in my diet (contrary to my doctor's claims). I cut out gluten, started a food and reaction diary, and then started experimenting with trials that eliminated other foods from my diet.

But when avoiding a food didn't help, I always made the mistake of adding it back into my diet. After a year and a half of experimenting with various diet trials, the problem with my method finally dawned on me. Once I saw the light (and cut every suspicious food in my food and reaction diary out of my diet, at the same time) within 2 weeks I was in remission. IOW, we have to either get it right, or make lucky guesses at the foods utilized in our elimination diet, or we are jinxed from the start. And unfortunately, many of us guess wrong (because we are all different, so using a diet that worked for someone else, may not work for us). For example, it is surprising how many of us are sensitive to beef and chicken. The safest meats (IOW, meats that the fewest members here react to) are turkey and lamb.

Your choice of chocolates is wise, because those higher-percentage chocolates are often soy-free. That leaves histamine as the only possible issue. IOW, you might have to limit the amount of those chocolates that you eat, but not totally avoid them. So that's a plus.

If you are able to locate a doctor who actually understands this disease (and how to treat it properly), please share her or his name with us, so that we can add her or him to our list of qualified physicians who understand MC and can successfully treat it. Unfortunately they are as scarce as hens teeth, especially when mast cell issues are added to the mix of symptoms and triggers.

Please don't let us rush you, or overwhelm you with information, because this is a very complex disease, there is a tremendous amount of information available here after so many members have been sharing information on MC for almost 10 years (our 10-year anniversary will be in May), and it takes time to sort out all the information that is irrelevant to our own situation, and absorb the information that may be useful. If it were easy, GI specialists could do it.

You're very welcome, and please don't hesitate to ask questions anytime you're not sure about something. There are no dumb questions concerning MC, and unlike so many closed-minded GI specialists, most of us here learn something new in virtually every discussion.

Tex

Hi Tex,

I have to laugh at your attitude towards doctors because my experience has been very similar. I have never achieved any health recovery with the advice of doctors - I have done it all on my own. I was experiencing anaphylaxis in 2009, which I described to my doctor as a "heavy feeling in my throat" - he just looked at me like I was crazy and tried to prescribe me antibiotics! He didn't like my large tonsils. When I tried to explain to him that I wasn't sick and they were permanently enlarged since childhood, he just said, "If my tonsils looked like that, I'd want antibiotics." Um! He didn't even take a throat culture! I finally realized, after another doctor noticing my white blood cells indicated I was an "allergic girl" that the throat heaviness was anaphylaxis one day when it was more severe and it felt like my throat was closing in. Neither of those doctors put two and two together. I could have died because of their negligence.

So, yeah. It's difficult to find a good doctor. So frustrating!

Thank you for relating your experiences to me. It sounds like you've had a long and tumultuous road to recovery, and your energy & helpfulness are wonderful and inspiring!

I do great with beef, turkey and fish. Chicken is tricky; a few years back, it would make me feel like I had the flu after eating it. I feel neutral with it now because I realized it was the skin causing that reaction, but I don't really like it and feel I shouldn't be eating it, so I usually have it only when my father cooks it or I am pinching off my son's food. I have noticed that eating pork can increase my allergies to dogs & gets me a tiny bit bloated, plus I hate eating pigs because they are so smart, so I keep that to a minimum also.

I am going to do an elimination diet in a few weeks, I have decided from all your information. I am debating whether or not to keep in my 24 hour yogurt, which I eat for probiotics, but if I can afford some more VSL 3, I will definitely cut that out. Keeping my blood sugar down gets trickier when I cut out options like cheese, as it's hard to eat meat all day long, so I am going to work on my hydration & being able to do higher BPM workouts, which burn more glycogen and will let me eat safe foods for me that help my tummy like plantains and sweet potatoes.

Does anyone have issues with squash? Like winter squash? I have already experienced major tummy issues with summer squash in the past, so I generally avoid it, but winter squash sometimes seems fine for me, but sometimes hurts me. I think I will cut that out during my elimination diet also, along with (sniff) chocolate. Doesn't leave much, but hopefully it isn't forever!

I am very grateful to have found this forum and thank all of you for your time! I seem to be doing better with sipping electrolyte beverages in small amounts throughout the day & am feeling a bit less thirsty, so that helps for now. I think the best bet in the long run is to try to get in remission. I am back and forth right now with MC symptoms occurring about 3-4 times a week, which is improvement but still interrupts my life. I would like to not have to fast when my boyfriend comes to visit anymore, LOL.

Best wishes,

Michele

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I do great with beef, turkey and fish. Chicken is tricky; a few years back, it would make me feel like I had the flu after eating it. I feel neutral with it now because I realized it was the skin causing that reaction, but I don't really like it and feel I shouldn't be eating it, so I usually have it only when my father cooks it or I am pinching off my son's food. I have noticed that eating pork can increase my allergies to dogs & gets me a tiny bit bloated, plus I hate eating pigs because they are so smart, so I keep that to a minimum also.

A few poultry processors have been known to add gluten to the "flavor-enhancing rinse water (oops, I mean phosphates)" that they inject into birds under the pretense of "tenderizing" them. Their real goal of course, is to sell as much plain old water for the same price as chicken, as they can get away with.

Several members here have been very creative with an all-meat diet, in order to achieve remission when they seemed to react to almost everything else. After reaching a state of remission, they were able to add other foods back into their diet.

I am debating whether or not to keep in my 24 hour yogurt, which I eat for probiotics, but if I can afford some more VSL 3, I will definitely cut that out.

If there is any way you could do without both, it would maximize your chances for success with your exclusion diet. But if you feel that you can't live without at least one of them, the one to cut out would be the yogurt, IMO. This is because while a minority of us seem to be able to tolerate a commercial probiotic (before we are in remission), even fewer can tolerate the casein in yogurt

I don't recall seeing any posts that described adverse results from eating squash of any kind. Virtually all of us seem to be able to tolerate them very well. This also applies to well-cooked carrots. Did you remove the peel, and overcook them? Having issues with such a food on some occasions, but not at other times, suggests a dosage issue. Dosage issues are usually associated with something such as fiber or histamine content. Since squash are not considered to be a source of histamine, fiber would be the only possible obstacle. Removing the peel will drastically lower the amount of fiber in a serving, and that allows us to eat a much larger serving of such a food without causing a reaction that might occur if the peel were left intact.

Can you tolerate avocados? While avocados have a rather high fat and calorie count, they are an excellent low glycemic index food. Most of us on a very restricted diet, are always on the lookout for safe sources of fat and calories, but not everyone can tolerate avocados, because unfortunately they also contain a significant amount of fiber.

I think the best bet in the long run is to try to get in remission.

Definitely. That should be the first order of business, because once we are in remission, everything else suddenly becomes so much easier, and we can then concentrate on the finer points of life, including expanding our diet, and enjoying life again. As long as were are not in remission, our long-term health is sort of held hostage by the inflammation, and our health tends to slowly deteriorate, due to nutrient malabsorption issues and other adverse consequences of long-term inflammation.

Tex