CC and Autonomic Dysfunction, my story

[sjbruce]

Hi all!

New here so bear with me! I had symptoms, but relatively mild and not long lasting, for years before being diagnosed in 2007. I tried a short course of 2 meds the GI doc said "cured" 50% of people, no luck with me. Not sure what they were. So I've just "managed" it with anti-D meds OTC for years until…..last summer.

2 weeks after minor surgery the D started and wouldn't stop, with anything OTC or with prescription Lomotil. 5 weeks, up to 20 episodes daily, I was too weak to walk across the room, even with almost daily IV fluids. Another colonoscopy, another confirmation of Collagenous Colitis. Doc prescribed Entocort, I asked him and pcp and pharmacist if it was a steroid, and no one answered accurately, or I was too out of it to understand. Huge family history of problems with steroids, including psychosis. I took it for 3 days, anxiety became so severe I needed injections of anti-anxiety meds to not totally lose it. It had started to slow down the D though, and I was so grateful although I still had to cancel a month long trip and lost lots of money. Tried Lialda and nearly passed out after trying it twice (possibly from being so weak already) so had to stop.

My daughter came to Maui, where I lived, and moved me to San Diego. Was wheelchair bound, bed ridden at that point.
I think the Entocort started a remission, even though I only took it 3 days. I gradually improved over 3 months until I was symptom free for almost a month. My energy had returned to a degree as well (I also have chronic lyme disease) but then I had to make an emergency trip to Texas to help care for my grandson when my granddaughter was born with severe problems. I held up during the 8 day trip, even with extra caffeine, and did ok for 8 days after return. Then 10 days ago, D returned with a vengeance and nothing has helped.

I decided to 1/2 the dose of the Lialda to 1.2 mg 2x day and try that again. Have taken one so far today, I feel the fatigue and fogginess as before but not to the same degree. Hoping beyond hope that this works for me as it has for some of you. I'm thinking the "trauma" of the surgery last summer, and trip, travel and grief with my granddaughter last month, is what triggered my relapse with CC. Has anyone experienced this?

Also curious if anyone else has a diagnosis of autonomic dysfunction (in my case caused by Lyme Disease) and if there is a correlation between that and collagenous colitis. And I was just diagnosed with osteoporosis which I attribute to malabsorption of nutrients in my diet due to CC.

Thanks! So happy to have found this group!!!

[Leah]

Welcome.
MANY OF US HAVE HAS STORIES LIKE YOURS. I am sure Tex will chime in soon to welcome you also. He is our expert and has written a book that you can see in the upper right hand corner of this page. If you click on it, you will be in Amazon. It's a great source of information on Microscopic Colitis.

First of all, MC can not be "cured". It can go into remission though. If you have been reading posts on this page, you know that diet is key to healing your intestines. If you haven't addressed that yet, then that's where you want to start. Most of us here can not eat gluten. Half are dairy intolerant, some of us can't eat soy , and a smaller number can't have eggs. Those are the main culprits to CAUSING inflammation.

Then there are many foods that I call irritants that will keep you from getting better because they are too hard on an INFLAMED gut. Some of those are fiber foods like beans and legumes, acid foods like tomato and citrus, spicy, and RAW fruits and veggies. These things can be tested and added later when you have some healing under your belt. Caffeine is tough for many of us also.

most of us keep it very simple at first. We eat mostly proteins, COOKED veggies ( mostly squash, green beans, carrots). rice, sweet potato, broth soups with veggies, gluten free chex cereal with almond milk…etc. Freshly cooked and very little processed stuff.

We all are different in EXACTLY what works for us, but those are the basics. If you want to know for sure what you are producing too many IgA antibodies to ( and therefore are intolerant to ), there is a lab called Enterolab that you send a stool sample to to be tested ( google them). It's the only one like this in the country. It is a bit costly, but saves a lot of time testing these foods out.

Many of us have more then one autoimmune thing going on. They seem to perpetuate others if left unchecked.

Another thing to look into is the connection to mast cell/ histamine problems. Taking antihistamines and eating low histamine foods helps many of us.

Okay, I will let others chime in. You have come to the right place if you are ready to take charge of your health and start the journey to actually healing your gut.
Take Care, ask questions, and keep us posted.
Leah

[tex]

Hi Seren,

Welcome to the discussion board. To answer your question — MC can cause some of the spectrum of symptoms attributable to dysautonomia, but the most common one's associated with MC are those that are due to functions controlled by the enteric nervous system, primarily motility issues, and digestive enzyme production problems. Most GI specialists would never think of considering a connection with dysautonomia though, primarily because that's not even on their radar, since it's not a part of the original description of the disease. By contrast, more is known about such risks involved with Lyme disease, so the average doctor should be much more likely to be cognizant of such possible symptoms in connection with Lyme disease.

Since virtually all of us are sensitive to gluten, the most common cause of addituional dysautonomia symptoms for those of us who have MC is untreated gluten sensitivity. Untreated gluten sensitivity can lead to neurological issues that definitely involve autonomic nervous system dysfunction. For example, I have peripheral neuropathy, balance issues, gait irregularities, breathing difficulties (diaphragm control issues), etc., because of years of untreated gluten sensitivity, associated with MC.

Just try to find a neurologist who is aware of the gluten connection, though. Despite the fact that published research describing this issue has been around for over 10 years now, most mainstream neurologists have never heard of it and/or deny that it is even possible. So much for neurologists and their training.

The prescription vitamin mix known as Metanx (the active forms of vitamins B-12, B-9, and B-6) is usually very helpful for mitigating some of these symptoms, but a complete reversal seems unlikely. I've been taking it for over 4 years now, and while my symptoms were greatly improved after taking it for a year, improvement has sort of leveled off, and it's becoming obvious that my functional capabilities will probably never completely return to normal levels.

With your family history of severe adverse reactions to corticosteroids, your doctor should never have prescribed Entocort for you. That doctor is a danger to his patients.

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

Tex

[sjbruce]

Thank you Leah and Tex! I have so much to learn. I'd given up dairy, but the day symptoms returned this time, I had a small piece of my daughter's homemade birthday cake which had whipped cream in the frosting. Gave it up again, but symptoms remain. I've never felt good after using soy, and have been only using it in coffee when I get it from a cafe, but will let that go too. I've tried giving up gluten and not noticed any improvement, but the statistics regarding the connection are too significant to ignore so I'm willing to let that go as well.
CC has caused so much weight loss, such poor nutrition, and is what I feel is the cause of my osteoporosis at a relatively young age. I wonder if other group members have experienced this.

The neuro symptoms from gluten are similar to what I experience and have attributed to Lyme disease. It will be good to let that go for a longer period of time to see what remains.

Most of the dietary recommendations were also made to me by a dietician through my health insurance, just not the gluten one. I only eat well cooked veggies, little fruit, but enough meat protein. I drink almond milk fortified with calcium.

I still feel there is some connect between the Lyme and the CC. It could just be that every time I get sicker with Lyme, the CC kicks in as well due to weakened system in general perhaps.

Thanks again! Looking forward to learning and contributing my limited experience!

[tex]

FWIW, I kept a food/reaction journal for 2 and a half years, and I never could tell that avoiding gluten made any difference either (until many months after I had cut it out of my diet). That's because it's a long-term reaction for some of us. Many of us react within a few hours of eating gluten (some react within a few minutes, if they are also allergic to wheat), but some of us only begin to react after we have been eating it for months (IOW, after a significant amount of damage has accrued), and for those of us in that situation, we also seem to continue to react for a long time after gluten has been withdrawn from our diet.

Therefore we can't tell any difference from short-term diet changes. The half-life of anti-gliadin antibodies (gliadin is the primary peptide in the wheat molecule that causes us to react, but there are also many others) is 120 days. And the immune system continues to produce antibodies for a long time (years) after gluten is withdrawn from the diet. That means that it actually takes several years for most of us, for our antibody levels to decay to normal levels, after we cut gluten out of our diet. The stool tests offered by EnteroLab, for example, are so sensitive that they can always detect anti-gliadin antibodies for at least a year after gluten has been totally removed from the diet. And in most cases, they can actually detect them up to 2 years after the GF diet is adopted.

The blood tests, by contrast, are typically only capable of detecting anti-gliadin antibodies for approximately 2 or 3 months after the diet is adopted. Fortunately, as long as we faithfully avoid all traces of gluten (and our other food sensitivities), we are usually able to reach remission years before our antibody level decays to a normal level, so we don't have to wait for the last phase of healing to occur.

Looking at the research data, it appears to me that the primary cause of osteoporosis in all developed countries is untreated gluten sensitivity, vitamin D deficiency, and magnesium deficiency, in that order. Osteopenia and osteoporosis are common problems among the members of this board, because not only does untreated gluten sensitivity cause osteoporosis, but vitamin D and magnesium are essential (along with calcium) in order for the body to be able to utilize calcium to form new bone tissue and maintain good bone density. And all inflammatory bowel diseases (IBDs) apparently deplete vitamin D levels in the body.

But more than that, it's known that vitamin D deficiency is associated with the development of IBDs, so the vitamin D deficiency/MC merry-go-round becomes a self-perpetuating problem unless we take a significant vitamin D supplement. And to round out the problem, magnesium deficiency is present at epidemic levels in the general population. So this is why most of us are at risk of osteoporosis, unless we get all our ducks in a row, and keep them there.

Many members are reluctant to take budesonide, because corticosteroids are also known to reduce bone density. But by avoiding gluten, keeping our vitamin D level up, and making sure that we have adequate magnesium in our diet, virtually every one here is able to successfully turn the situation around and either boost their bone density, or at least maintain it at a steady level (even if budesonide is part of their treatment program).

I only eat well cooked veggies, little fruit, but enough meat protein. I drink almond milk fortified with calcium.

You're definitely on the right track. And I agree that Lyme disease almost surely has an adverse effect on MC, because if my theory is correct, the primary prerequisite for triggering MC is chronic stress, and that stress can be in the form of either physical stress, physiological stress, or emotional stress. So IMO, the stress from a Lyme disease event would be more than adequate to qualify as a stressful event that could trigger MC.

You're very welcome.

Tex

[sjbruce]

Thanks Tex, for all the information and support. I'm going to read through it again tomorrow when I'm not so tired from the Lialda.
It sounds like it's more and more worth giving up the gluten!

[Leah]

It's the best thing you can do for yourself Seren. I hope you give it a good long try and see results!

Leah

[sjbruce]

Thank you Leah. My Lyme specialist also recommended a gluten free diet today. So, all signs say "yes"!
Difficult week to start though, with Thanksgiving!

[Leah]

Ha ha…. well I guess you can wait until after Thanksgiving….. but don't let Christmas be another "reason" to wait. There are lots of good recipes out there that can be made for the holidays. I am making both an apple and pumpkin pie that are both gluten and dairy free…. and mashed sweet potatoes :) Turkey and green beans with olive oil and garlic and I am good to go! :)

leah

[Zizzle]

Welcome Seren!
I've dealt with dysautonomia symptoms all my life. Low BP, orthostatic hypotension, benign tremor, low heart rate, heart palpitations. I used to think it was all caused by mitral valve prolapse, but I don't even fit the diagnostic criteria for it anymore. I have joint hypermobility (mild Ehlers Danlos Syndrome), which is often associated with dysautonomia (weak collagen=weak blood vessels, etc). My symptoms gradually improved as I got my MC symptoms under control, probably because I'm able to retain salt and electrolytes now. However, a BP of 80/60 is "normal" for me.