I am new to this forum

[annaewa56]

Hello Everyone,

I have read Wayne's book on Microscopic Colitis and finally after seven years of suffering understand the disease better. His book also gave me hope and guided me to this forum. I am forever grateful to him for his research and guidance.

My digestive issues started back in 2005 while traveling in Mexico. It took two years of feeling unwell to my stomach and dizzy and going to quite a few doctors without any answers, until in 2007 an unstoppable D happened for the first time. With the D I suffered a severe weight loss of 14 lbs in two months and ended up in a hospital dehydrated and very weak. There I was treated with IV fluids to the point of flooding my lungs and many IV antibiotics. The doctors had no idea what was wrong with me until on day 7, after the colonoscopy they announced that I had collagenous colitis. I returned home sicker than before and continued to feel very sick for many months. I suffered from extreme fatigue and brain fog and very low blood pressure and dizziness. I was placed on Entocort for the first time. Nobody explained MC to me.

Later that year because I wasn't getting better I saw a different GI doctor from another major hospital and he did some genetic testing and proclaimed that I had celiac disease. He suggested a gluten free diet. For years I thought that I had celiac disease and I focused on that forgetting about MC. I was not thriving on GF diet like other patients, so I kept on searching for answers. Thanks to an Ayurveda practitioner I started researching parasites and learned that while in Mexico I contracted an amoeba parasite called Blastocistys Hominis.

I believe that this parasite triggered my MC. It took years of trying various cures for BH and finally under the supervision from a doctor from London I underwent a triple drug therapy which finally cured me of this nasty bug. So again for years I focused on the parasite as the main cause of my illness and not on MC. I believed that once I am rid of the bugs I am cured. Not so.

There have been two other flair ups of MC to date. The second one in 2010 and the third and most current one in January of this year.
The second one I was able to control with Specific Carbohydrate Diet. Unfortunately the diet didn't work any more in January and after two months of D and 14lbs weight loss I had to give in an take another course of Entocort. This time I was on it for 14 weeks. Right now I am on week two free of the steroid.

In the meantime I did the Enterolab tests and learned which foods I need to avoid in addition to gluten.They are: milk, eggs, soy, tuna, chicken and walnuts.

I have been avoiding all those foods and I did gain back 7 lbs. I continue to have very fragile digestion and I am experiencing some intestinal discomfort. This year I was also diagnosed with Hashimoto's.

I am wondering if many of you also suffer from episodes of extremely low blood pressure (80/54), dizziness, severe weigh loss, fatigue,
muscle and joint pain when MC strikes. Also I would like to hear how many of you also have thyroid illnesses in addition to MC. How do you stop the unstoppable watery D without taking Entocort? Can the symptoms (D) return after stopping Entocort while avoiding all the food triggers?

I have so many questions and concerns but this is a very long first post so I will wait to post them the next time.

Thank you for taking the time to read my story.

[UkuleleLady]

Hi Anna,
Welcome to the forum. I'm sorry you're one of us, but I'm glad you found the site and Wayne's book. Your symptoms are commonly discussed here. I myself have had the unstoppable D, extreme weightloss and joint pain. I do not have thyroid issues but many do and they'll chime in.

Glad to hear you did the enterolab tests, it's a great help.

Entocort worked for me, but it took me several months to get relief on that while I eliminated all my triggers. I weaned off completely after six months, and I'm doing great now, mostly good days. I get some joint and intestinal pain and maybe an extra BM here and there if I overdo it on fiber, acidic foods, and stress. So I limit all that as much as possible.

My body will probably never be the same, but to tell the truth I was much sicker pre-MC with constant colds, strange rashes, allergies, asthma and GERD. Since I went into remission (my imperfect remission), I've never felt healthier; that my body isn't struggling for once.

I can exercise again and lead a very normal life. My safe foods are important. If you are still having D be sure to limit fruits, fiber, vegetables. Fiber causes problems with healing. Over cook your veg.

Best wishes and keep asking questions.

Nancy

[Gabes-Apg]

welcome!
great that you found us, and have embraced an eating plan that excludes your intolerances. (sympathies that you have MC)

I was able to stop the WD without steroids, i did use Questran Lite and immodium for the first two months or so to slow motility.
I removed all the major triggers and followed a bland, well cooked, low inflammation, minimal fibre, gut healing eating plan of home cooked meals.
home made bone broth, slow cooked stews, well cooked veges. everything was GF/DF/YF and eventually SF
no salad, no fruit, no nuts,
only 4 veges, potato, sweet potato, carrot, parsnip, only drinks were black coffee, water, watered down apple juice
within 3 months things were pretty stable, there was only a return of WD/urgent motion if there was contamination or highly stressful day at work

I stuck with this for over 12 months before I embraced trying any new ingredients.
I also did acupuncture to help reduce inflammation and support the digestion organs that had been stressed by the few years of digestion issues
I also used good quality supplements like Zinc liquid, Vit D3 and magnesium.

I wont lie and say it was easy, then again, if you stick with it, give your body time to heal, be organised and do your cook up on the weekend to be prepared for the working week, it is very dooable!

hope this helps
healing hugs

[tex]

Hi Anna,

Welcome to our internet family. Nancy and Gabes have already offered some excellent suggestions and comments, so I'll just respond to these questions:

I am wondering if many of you also suffer from episodes of extremely low blood pressure (80/54), dizziness, severe weigh loss, fatigue, muscle and joint pain when MC strikes.

Low blood pressure is not common, but we have several members who have that problem. The other symptoms are very common among most members here, though not everyone has all or even most of them, and others have even more symptoms.

Also I would like to hear how many of you also have thyroid illnesses in addition to MC.

We are approximately 7 times as likely as someone in the general population to have a thyroid problem. You can see the results of an informal poll at the link below.

Poll About Thyroid Issues

How do you stop the unstoppable watery D without taking Entocort?

Avoiding every food that causes us to react will allow the gut to heal, and the D will stop as the inflammation begins to fade away and the intestines begin to heal. Complete healing can take years to complete, but the diet usually takes several months to a year to stop the D for most of us (unless we take a medication such as Entocort to help mask the symptoms).

Can the symptoms (D) return after stopping Entocort while avoiding all the food triggers?

Yes they can. Many medications can cause a relapse (including NSAIDS, antibiotics, PPIs, SSRIs, SNRIs,statins, bisphosphonates, beta blockers, and a few others), and severe stress can also trigger a relapse, even if we eat a safe diet and do everything else right.

Again, welcome aboard, and as Nancy said, "keep asking questions".

Tex (Wayne)

[Heady]

Welcome Anna, you have found the right path to healing. Well done on reading the book! Good to hear You are very proactive. Sorry your journey has been rough!
I do not have thyroid issues, But do have diabetes. I started my elimination diet Apr 1st and have had only 2 days of WD since then. I did not do the Enterolab testing nor do I take any meds other than vit D. I am very thankful for my progress and the folks here that helped me get my life back. My energy levels are coming back, as is my appetite. I did not lose weight during my 6 mth flare but being a diabetic I ate every 4hrs. My whole body ached like I had the flu. The worst was my back and under my ribs. My blood pressure has always hovered around 110/70 but I did have a few lousy days of extreme lows with fatigue & dizzy spells. I have not had any of these symptoms since beginning my elim. diet. Best wishes for remission.

[nerdhume]

Welcome Anna, I believe this group is a lifesaver and I'm sure someone will be able to answer any questions you have so don't be afraid to ask anything.

I am relatively new to the group, took Uceris for about 2 1/2 months then stopped it 11 days ago. The drug worked for my WD the first day and I am still ok on my restricted diet. Will see my GI this morning for follow up.

I am wondering if many of you also suffer from episodes of extremely low blood pressure (80/54), dizziness, severe weigh loss, fatigue, muscle and joint pain when MC strikes.

I have all these symptoms except BP mine runs a little bit high.

The worst part of the illness for me is:
1. Unpredictability, don't know from one day to the next if I will be able to do something.
2. Lack of understanding. Nobody truly understands this illness except those of us that have it.
3. Embarrassment. Having to run out in the middle of a meeting, etc. Having accidents is the worst!
4. Doctors and researchers that try to say it's all in our head.

As others have said, sorry you are one of us, and glad you found us.

[CathyMe.]

I am wondering if many of you also suffer from episodes of extremely low blood pressure (80/54), dizziness, severe weigh loss, fatigue,
muscle and joint pain when MC strikes. Also I would like to hear how many of you also have thyroid illnesses in addition to MC. How do you stop the unstoppable watery D without taking Entocort? Can the symptoms (D) return after stopping Entocort while avoiding all the food triggers?

Hi Anna and welcome. You have received some terrific advice already and good for you for doing your own research and continuing to look for answers! I suffered from major fatigue, weight loss and joint pain while flaring. I'm intrigued with your low blood pressure question as mine has been going down significantly and at a regular check up yesterday with my GP, it was 100/60. She wasn't extremely concerned about this but did question it.
I also found success with Entocort and am now controlling my symptoms with diet alone so yes, it's possible!

[Chrisdat]

Anna,

Welcome. I too have low blood pressure. For me it is POTS (postural hypotension), that causes dizziness, almost fainting, falling upon sudden standing, wobbliness, etc.
I also have Mast Cell issues. Tex has a great selection of mast cell discussions linked from the homepage here. You might want to check it out. From my research it looks like POTS is very common with MC and Mast cell syndrome when you have both. Maybe not as common with MC alone.
I also have had extreme weight loss. I've lost 9-12 lbs. a month for many months, and am still losing.
Entocort has helped, Pepto-Bismal (9 a day) has helped, and diet has helped. These things have kept me from severe dehydration, stopped the vomiting and nausea ( D driven nausea) and decreased the urgency. I still have 1-2 WD a day, so I am still plugging along.
Try antihistamines - eat low histamine, absolutely fresh proteins (no leftovers), And keep logging your diet, to see if you have Mast cell involvement. This tweak might help you, or at least ease your mind that mast cells are not degrading too much for you. Antihistamines definitely help me. Diet is key!
Lastly, I'm hypothyroid. Never tested for Hashimoto's, but probably have that, as I have other autoimmune issues. Autoimmune issues come in bunches it seems. So not surprising you have a few. Anti-inflammatory diet, managing stress, quality sleep, and minimize environmental stresses (toxins, gluten-shampoos, creams with chemicals, polluted air, etc.), all these things managed carefully really help me feel better and set me on a path of reducing flares and having some healing.

[tex]

From my research it looks like POTS is very common with MC and Mast cell syndrome when you have both. Maybe not as common with MC alone.

Good point. It never occurred to me (that the combination of MC and mast cell activation disorder may be the key to the link with POTS) but that certainly makes sense. Thank you for making that point.

Tex

[Leah]

Welcome Anna! It's nice to hear from a newbie who is so pro-active :)

You have gotten some excellent advice so far. The most important thing to remember is that the healing takes time…especially if you have had symptoms for a long period of time.

I was on Entocort for 6 months and it worked great, but i also overhauled my diet at the same time. Besides all the obvious foods ( gluten and dairy), I also took out nightshades, fiber and acid foods, fruit, coffee, processed foods, and most sugar. Entocort has proven most effective when taken for at least 4 months and WEANED DOWN VERY SLOWLY. Once I was off the drug, I stuck with that diet for another few months before trying to add anything back in. When I was at a very low dose, I noticed I was reacting to peanut butter. That's when I realized I was reacting to soy and it's "cousins" ( like split peas, lentils, hummus,and peanut butter). Out it went.

At this point, I was down to one BM a day, but it was still soft. That's when we started discussing mast cell degranulation and antihistamines on this forum. I decided to try an OTC antihistamine. The next day… Norman! and the next and the next! That was the last piece to my puzzle. I now take an Allegra each morning and a Benadryl at night. Since mast cells are an issue for me, I don't eat any protein that is more then a day old and don't eat too many high histamine foods ( although I love avocados and I do use some vinegar).

The good news is that i have been able to add many foods back in to my diet like white and black beans, small salads, very small quantities of fruit, white wine ( sometimes I take an h-2 antihistamine like Pepcid when I choose to drink wine), potatoes, decaf coffee, spicy foods like Mexican, and a little sugar. I still remain G,D,S free ( Ok sometimes I have a little Feta on a salad). If I cheat a little now, I will have what we call "MC mud" the next day, but i guess we all make our choices. On the whole, I feel mostly in control of this disease.

As you can see, this is a journey and we all have our own. It's complicated, but not impossible to figure out. Patience.

I also have a few autoimmune diseases, thyroid being one of them. it's common for us. I also have low blood pressure, but I always have.

Good luck and keep us posted on your progress.
Leah

[annaewa56]

Thank you so much for your warm welcome and very kind words.
Leah writes about cell degranulation and antihistamines and this is very interesting to me as I suspect that this is a problem I have.
So much to figure out still with my diet. It is so helpful to hear that some of us are able to control the disease by personalized proper diet alone.
How do we determine that mast cell degranulation is an issue for us?

Second week off Entocort I am nervous as my BM are not as good and get bloating and discomfort after eating even with enzymes and HCL.

There is a quote I wish to share with all of you:
"If you do not change direction, you may end up where you are heading." Lao-tzu

[annaewa56]

Leah,

How did you figure out that you had mast cell issues? Did you do some tests or just by experimenting with foods?

I am avoiding high histamine foods such as komucha that I used to make and drank regularly as well as sauerkraut, kimchi, miso, umeboshi plums. I love all those fermented foods but I have stopped eating them. The irony is that all these foods are suppose to be so good for your digestion and your gut flora. I stopped drinking wine as I noticed that it gave me a headache and made me feel very unwell. I do eat avocados, spinach in raw juice and occasionally mushrooms. Are kale and swiss chard and mustard greens also high in histamine? What about bananas which is the only fruit I eat? Are they also high histamine?

The pills that you take are they both over the counter?

Ania

[Leah]

Hi Ania. I figured out that histamines were an issue with me when I was off Entocort. I was feeling pretty good and only going once a day, but my BMs were never "normal" Always soft. I decided to take an OTC antihistamine to see if it made a difference. The next day, my BM was solid! I did this for a few days straight and low and behold,it worked all days. I started with one Allegra in the morning. I still was not adhering to a strict low histamine diet because I felt I had given up so much already. Because of that ( I believe), the consistency went up and down. I then added one Benadryl in the PM. That seemed to do the trick ( and it helps me sleep better… bonus!) . I must say that is I kept very strict with the histamine diet, I probably wouldn't need the second one, but I have made the personal choice to eat avocados, and I use condiments like mustard and ketchup. I also use vinegar on the salad I can now eat and sometimes mushrooms. However, I stay away from fermented foods and leftovers that are over 24 hours old. They are the worst! Another thing I do is take an H-2 antihistamine ( like Pepcid or Tagament) when I know I will be drinking white wine or eating at a gathering of some sort. It's my insurance policy :)

You are right about fermented foods being good for the digestive track, but if it's directly making our symptoms worse, then it's probably best to take them out. Yes, Bananas are high as is spinach :( You can google "high histamine foods" and get a complete list very easily.

I am almost 2 1/2 years post dx and I probably take more risks then others here do. I was VERY ADHERENT for the first year. That's when I started to test more foods back in- successfully. I still stay gluten, dairy and soy free, but I sometimes choose a social life… which for me, leads to less stress about the whole thing. Yes, sometimes I pay for it with a one day bout of D, but I usually bounce back fairly quickly. I'm not advocating this way of thinking ( especially for someone new), but we all have to make our own choices. I admire those who stay 100 percent true to their diet. If I did, I know I would feel completely well, but I also would miss out on a lot of life because the diet makes things difficult in many situations. I'M GOOD right now with how I have chosen to manage this disease.

Does that help? Hope so
Take Care
Leah

[annaewa56]

Thank you Leah,

I started eliminating high histamine foods but do not notice any difference yet. I am three weeks post Entocort and I am not feeling well. The extreme fatigue is back and my stools are not as good as they were on Entocord. I think I need to try taking an antihistamine to see if it will make a difference the way it did for you.
Would you recommend I start with Allegra? I was so happy to be drug free. I have this irrational fear of all drugs and tend to go first to herbal remedies. Your story is convincing and I am willing to try a drug if it means a big improvement in the way I feel.

Your response was very helpful.
I researched histamine foods and the list is so long.
Some of my favorite foods such as lemons, limes, avocados, bananas, green tea are on that list.
I can try avoiding them for a while but with so many other food restrictions I have, I don't know if I can avoid all of them. This is very hard. Sour is my favorite and where do I get my sour flavor from?

[Chrisdat]

Ania,

Try the antihistamines first, while working on a low-histamine diet. It is not a "no"-histamine diet, that is impossible since many, many foods will either block the break-down of histamines, contain histamines at some point, or block enzymes that help break down histamines. Citrus fruits inhibit the break-down of histamines. I would avoid citrus fruits in the presence of other foods, but a slice of lemon in water has probably very little effect by itself. I'd also avoid high-histamine foods (red-wine, fermented foods, etc.), and alcohol (DAO blocker) around meals.

Yes the list is long, and always getting longer, depending on the source of your list(s) of low-histamine foods. Leftovers are one of the biggest offenders (IMHO), and cause me the most trouble. Fish if extremely fresh is OK for me, but freshness is the key. Note that the "lists" of low-histamine foods often just say "fish", while not explaining the reasons.

Anyway, I think the first step is antihistamines. It is the easiest, and will help you determine if you have a histamine (mast cell) problem at all. I take a Clariton in the day, and Benedryl at night. At the same time, try to keep watch over high-histamine foods (freshness - being the biggest factor), and see if you see any improvement. If no improvement, there is no reason to religiously follow a low-histamine diet.

Chris