New here - thanks for this forum!

Betsbrooks · Post by **Betsbrooks** » Sun Apr 05, 2015 2:52 pm

Hi everyone!

I'm so glad to have found this forum. I am both new to the forum and new to the disease - I just got diagnosed with collagenous colitis last week after having a sudden onset of diarrhea last October. After reading all of the conventional medicine websites, finding the forum was like tapping a rich vein in a gold mine.

I think things are improving, though, in conventional medicine, because my gastroenterologist was pretty quick to suspect microscopic colitis when I described my symptoms, and he quickly got me in for a colonoscopy with biopsies. It took me a while to get to see him. After living with the diarrhea from October to December, I saw my primary care doctor, who said "stop taking fish oil and add a fiber supplement, and call me if it doesn't improve." I tried the LCD diet (and didn't take his advice to add fiber) but it was discouraging, probably because it has dairy in it. I was thinking I had SIBO, which is a hot topic in my family. Then I tried the GAPs diet and that seemed to be working - it has lots of broth and well-cooked vegetables, no grain or dairy - when I finally got to see the gastroenterologist in early March. He told me to eat gluten for a few weeks prior to the colonoscopy and blood test, and I noticed immediate worsening. So that answers that question - he didn't find celiac disease, but I'm definitely sensitive to gluten, and from my recent experience also dairy and egg whites. Will see what else, but I am feeling much better after limiting my diet again for only a week.

Another good sign about conventional medicine: when my gastroenterologist called me with the diagnosis he offered medication but said that if I was having success with changing my diet that would be a good course to take, and it was up to me.

I bought and read Tex's book (thank goodness for Kindle editions!) quickly this weekend, and I am especially thankful for the part about how the immune system might change focus to new food sensitivities after one eliminates a problem food. That helps explain the ups and downs of dietary experimentation and takes away some of the discouragement! I am also really interested in the mast cell connection because my mother had systemic mastocytosis. I wish she were still around to ask more questions about it because it was a really mysterious disease when she was diagnosed with it. I think I always thought it might be in her head. But now it makes sense. She said she always had hives as a kid, and after her divorce from my dad it seemed to move inward and affect her digestive tract. There was some medication she took for it that was made in the UK, and at one time she was afraid she would no longer be able to get it - this was in the 90's I think. Later she had dementia and came to live with me, and there was no medication in her pill inventory for the mastocytosis at that time. So I think she forgot about the condition and no one was there to remind her, but she only had occasional diarrhea. Poor thing, she was a lifelong smoker and I made her quit. It was stressful for both of us.

I've wondered if I inherited something from her - I have hay fever and later got interstitial cystitis, which flares at the same times of the year my hay fever does, and with stress. Now collagenous colitis. But I do feel fortunate to have a condition that a person can take action on, and maybe learn some things from that will be helpful in life. If I can learn to deal with stress better, that would be worthwhile! I was also diagnosed this past summer with osteoporosis, which was surprising because I'm 57 and the nurse practitioner at my Ob/Gyn thought it came on suspiciously fast. Maybe I can stop it getting much worse by healing my gut, at least I hope so.

I love reading all of your stories. I'm pretty early in the process so I will probably have some questions along the way, but I wanted to thank you for the forum and thank Tex for the book!

Betsy

Leah · Post by **Leah** » Sun Apr 05, 2015 3:08 pm

HI Betsy and welcome! You are so proactive that I think you will see success soon. You are doing a great job with your diet and you may want to omit soy for now also. Unfortunately, it's in so many processed foods. Beans and legumes ( which are related to soy) can also be an issue.

Have you tried to take an OTC antihistamine like Allegra or Zertec? That was a big piece to my puzzle. As soon as I tried one, the next morning's BM was normal! I continue to take them…especially during allergy season.

Good luck. I hope you heal fast!
leah

Post by **tex** » Sun Apr 05, 2015 3:42 pm

Hi Betsy,

Welcome to our Internet family. You seem to be off to a great start, and you are obviously learning to do the right things. When we first formed this discussion and support board roughly 10 years ago, the level of understanding of the disease among GI specialists was generally quite low. For most of us, the only way we could obtain reliable and useful treatment information was by sharing our experiences with each other and comparing notes. So it's gratifying to see that the medical specialists are finally making good progress (at least some of them are).

Betsy wrote:Another good sign about conventional medicine: when my gastroenterologist called me with the diagnosis he offered medication but said that if I was having success with changing my diet that would be a good course to take, and it was up to me.

Good for him. He obviously understands the disease better than many of his peers, and he should serve you well.

Many of us show the symptoms of interstitial cystitis (though we have never sought a diagnosis) whenever our MC is active. Apparently the same type of inflammation is involved. Here are links to a few short articles on mast cells and how they are associated with MC. Some of the articles contain links to references for additional information if you want to read more.

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?

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

Tex

Vanessa · Post by **Vanessa** » Sun Apr 05, 2015 3:55 pm

Hey Betsy,

Welcome. Another good thing to check is your vit d level. Make sure it is in the 60-70 range....since your osteoporosis came on " suddenly". Tex can chime in on that. Also magnesium spray, lotion, and soaks were a big part of my coming back to the land of the living. IBD are notorious for depleting these things especially if your active. I have to at least take a foot soak everyday since I also like to run

there was a time I never thought I would be able to again, but this forum made it possible. You've come to the right place!

Post by **tex** » Sun Apr 05, 2015 5:58 pm

Betsy,

Vanessa is quite correct — I forgot to address your osteoporosis diagnosis. As she pointed out, IBDs (including MC) are not only often triggered due to a vitamin D deficiency, but IBDs also deplete any existing supplies of vitamin D. And research shows that most people in this country typically have inadequate magnesium intake. Without adequate magnesium and vitamin D, it doesn't matter how much calcium is in our diet, or how much supplemental calcium we take — we run a high risk of developing osteoporosis in the long run.

With MC, we tend to have a greater need for magnesium and vitamin D than someone in the general population, but as long as we keep our levels in the sufficient range or above, we are fine. Research shows that almost everyone has an adequate amount of calcium in their diet to easily prevent or treat osteoporosis, provided that they are not deficient in magnesium or vitamin D. Gluten sensitivity is also closely associated with osteoporosis (because it causes vitamin and mineral malabsorption problems), so changing your diet should have eliminated that problem.

Tex

Leah · Post by **Leah** » Sun Apr 05, 2015 7:21 pm

And because magnesium taken orally can give us D, I use a spray magnesium oil ( that is absorbed by the skin. It is so easy!
Leah

nerdhume · Post by **nerdhume** » Mon Apr 06, 2015 4:01 am

I have had good luck with magnesium L-threonate it seems to be easier to absorb and doesn't cause D.

JFR · Post by **JFR** » Mon Apr 06, 2015 5:36 am

Magnesium glycinate doesn't cause D either. I have taken it for year.

UkuleleLady · Post by **UkuleleLady** » Mon Apr 06, 2015 9:00 am

Welcome Betsy!

I also had interstitial cystitis for years, along with other AI conditions. Some of them like IC have completely disappeared, others still come and go seasonally, unfortunately.

But my digestion is pretty normal thanks to diet, and for this I am eternally grateful. But it is one day at a time, so...I try to live in the present.

As for magnesium, it does help I've found. I like epsom salt baths best, but I also have the spray and sometimes take mag citrate powder if I am feeling pretty strong. But I have to be careful with that stuff.

Best wishes,
Nancy

Marcia K · Post by **Marcia K** » Mon Apr 06, 2015 7:55 pm

Hi, Betsy. Welcome to the group! Before I had full blown D and was diagnosed with LC I thought I had a UTI but the doctor said the culture was negative. I learned later that it was associated with the inflammation. I use magnesium gel on the soles of my feet at bedtime. That seems to work best for me.

Marcia