Another Newbie

[Mrs Turtle]

Hello to all the veterans on this board. I was diagnosed with CC after a colonoscopy on Nov. 28. It seems my colon has been my weak point all my life. I lived with constipation most of my life. I finally began to understand what was happening when I had my first colonoscopy after my older brother was diagnosed with colon cancer. The GI doc told me I had the longest colon he had ever seen. No colonoscopy was ever able to reach the end. Three years ago I ended up in the ER with a volvulus (a twisted colon) that the GI was able to untwist with a scope. The surgeon who had been on call that day came to see me the next day and told me that I should have an elective surgery to shorten my colon, or I could have another volvulus. I decided to do that, and have had a different set of problems since then.

I had bulging discs in my lumbar region during the golf season in 2011, for which physical therapy did the trick. However, this past summer I took way too much ibuprofen before and during my rounds of golf to help with twinges in my low back. Little did I know how much damage I would do to myself by doing that. I began having episodes of diarrhea in late July, which became more annoying in the autumn. Thankfully, it hasn't become too debilitating, except to leave my exercise class early to use the facilities, and go to the bathroom frequently. I am lucky to be retired, or it could have been a problem with the meetings I attended during my working career.

After the GI diagnosed me, I got a prescription for budesonide 9 mg for 4 weeks, 6 mg for 4 weeks, and 3 mg for 4 weeks. I am currently at the end of week 2 at 6 mg. I am finally feeling some improvement thanks to things I have learned from reading entries on this board. I purchased Tex's book, which is informative, but I'm finding it difficult to read due to the technical information. What had never occurred to me until early last week was that bisphosphonates could be a drug that caused me problems. I have taken sodium allendronate for a number of years, and had discussed discontinuing it with my family physician in November. Tex's information convinced me that now would be a good time to discontinue taking this pill. I seem to be a lot better since I discontinued that weekly dose starting last week.

I also learned about Enterolab from this board and decided that my health was worth spending the money for the testing. I got my results, but like DebE, I'm not sure what it means to me. Here are my results:

Quantitative Microscopic Fecal Fat Score 298 Units (Normal Range is less than 300 Units)

A + C) Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel
Mean Value 11 Antigenic Foods 2 Units (Normal Range is less than 10 Units)

Fecal Anti-gliadin IgA 9 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 2 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 1 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 2 Units (Normal Range is less than 10 Units)
Food for which there was no significant immunologic reactivity: Rice, Tuna, Corn, Chicken, Oat, Beef, Pork, Walnut, White potato, Cashew, Almond

I have been trying to follow a gluten free and dairy free diet for the past couple of weeks anyway. I decided that I have no real idea how to eat properly with a gluten free, dairy free, and raw fruits and veges diet (or what to do about my husband's food). Therefore, I decided I was worth the money to spend on a nutritionist. I have an appointment next week at a business that has a radio show, on which they have discussed gluten and dairy being causes of inflammation. I figured they should understand the need for an alternate diet.

I decided it was finally time for me to 'jump in' and write something, after reading for a month or so. Thanks for all the information I have learned from this board.

Marion

[humbird753]

Hi Marion, and welcome! You sure have done a lot of homework already - good for you.

IMO your results look great. BUT - we'll let Tex or others who are more knowledgeable at reading these results respond to your questions.

Again, welcome.

Paula

[jgivens]

Being new myself, I too, can't comment except to say that I am so glad that you and DebE are sharing these test results. It gives me hope that when and if I get mine done the results won't be as bad as I expect. It does give me pause though to see your gluten score is low. That would indicate there is no sensitivity? How can that be, Tex?

I think a nutritionist is a great idea. I'll bet your insurance would pay for it if you could get either the GI specialist OR your primary care doc to order a consult.

[tex]

Hi Marion,

Welcome to our internet family.

The GI doc told me I had the longest colon he had ever seen.

That's what I've been told. Mine was at least a third longer than normal. I say "was" because I parted company with it a couple of years ago (the reason was not related to MC). The diameter was also way oversize. I attribute the oversize dimensions to years of living with a bloated gut due to digestive problems resulting in gas that I couldn't get rid of. (My GI doc couldn't find anything wrong with me.) Fortunately, GI specialists are finally learning to take biopsy samples when they scope a gut that's plagued by uncontrollable diarrhea.

And like you, C was a chronic problem all my life, until the D debuted, and finally it became chronic. Or maybe chronic C causes the colon to stretch.

Looking at your test results from EnteroLab, I have a hunch that your MC was drug-induced and you may have caught this in time. That is to say, you may not have developed any food sensitivities that trigger autoimmune-type reactions, yet. If that turns out to be the case, then after you get your digestive system back on track again, and your gut has had sufficient time to heal, you may be able to control your MC symptoms by simply avoiding any drugs to which you are sensitive.

You were wise to pick a nutritionist who seems to be aware of food sensitivities, because outside of gluten sensitivity, most of them are not trained to be able to deal with the various food sensitivities that are associated with MC, and most members who have sought help from a nutritionist have found that to be a major problem.

I apologize for making the book a bit more technical than most people are comfortable with. Since I'm not a medical professional, I knew that if I wrote it for GI specialists or other physicians, precious few of them would ever read it, but I didn't want to write it so that none of them would read it (because there are a few GI specialists out there who are open-minded, and interested in learning wherever they can), so I compromised, and wrote it so that it wasn't ideal for either group, but I tried to explain most of the medical jargon that wasn't already common knowledge, so that most people would be able to benefit from it, (albeit it takes longer to read, this way). I'm still hoping that at least a few GI specialists will read it, because there are no other books specifically written about the disease, and much of the training that physicians receive about the disease is badly out of date.

Do you mind if I add your test results to our list here.?

Again, welcome to the board, and please feel free to ask anything.

Tex (Wayne)

[Leah]

Welcome Marion. i commend you for doing all you have done so far!
Your test results do look promising, but you may want to ask your doctor for one more blood test... one that makes sure you are producing IgA antibodies. When I got my results back from Enterolab, they were all very low. The lab told me to ask my doctor to test my levels and low and behold- I am IgA deficient! So those readings for me didn't tell me what I am intolerant to :( I had to do it the hard way -by a strict elimination diet.

Either way, if I were in your shoes, I'd stay away from gluten simply because our bodies can't really fully digest it. And for now, while you are still reacting, you may want to stay away from some known irritants like raw fruits and veggies, fiber foods like beans and salad, spicy foods, tomato products, maybe coffee and tea.... All of these things can be tested and added back in after your gut has healed.

Good luck and keep us posted on your progress
Leah

[MaggieRedwings]

Welcome Marion and I would say that you sure seem to have a plan in place with the nutritionist and the gluten free diet being in place. You have done your homework and to already go ahead with Entrolab is a plus.

Please keep us posted after your appointment with the nutritionist as this is an aspect I am seriously contemplating after all of these years.

Maggie

[Mrs Turtle]

Tex - feel free to include my test results with the others.

While I have a more difficult time reading your book due to the technical nature, I understand why you needed to write it that way. I am amazed that a non-medical person could do that kind of research and complex writing.

I also have wondered, Tex, if the years of constipation may have done some damage to my colon that may be reflected in the collagenous colitis. I also have wondered if having my colon twisted for a day or so with the volvulus three years ago did some damage. Because I had colon resection surgery so soon after the volvulus to shorten my colon, I never totally returned to what had been normal for me. I'm sure I will never know for sure. All I can do now is try to figure out how to live with this disease.

I have a difficult time getting a clinic appointment with my gastroenterologist because they all seem to be so busy with all of us "baby boomers" needing colonoscopies. My budesonide prescription came from a nurse practitioner in the GI clinic office. It is clear to me that I need to do as much as I can on my own to deal with this. I am glad to have this community to help share information.

Marion

[jgivens]

Marion,
I had such a hard time getting an appointment with a gastroenterologist in my town that I went to a city an hour away. I was very resentful of the fact that I could not get to see the GI specialist of my choice in my own town and I was reduced to tears by the very officious front desk woman who I had to get around for an appointment. I finally did get an appointment for a colonoscopy, but was told by her that I could not talk to even a nurse before the procedure unless I wanted to wait another 2 1/2 months. One of my good friends asked me why I would want to have an appointment for a colonoscopy in an office that obviously was overwhelmed with patients and asked me if I had something serious, if I ever thought I would get to see the GI specialist for help. After thinking about it, I decided that my friend made sense and that was when I went to the city an hour away.

IF I had not done so, I would probably not have had a colonoscopy with biopsies because I got that ordered after an initial visit with an NP. I feel very lucky to have found a professional office that treats me well and a gastroenterologist who admits he does not know all there is to know about MC and is willing to learn.

The stress alone, from having to deal with the office staff in my own town made everything just that much worse. You are correct about all of the Baby Boomers needing their colonoscopies--the gastroenterologists are "cleaning up" (pun intended) on our ancient and messed up guts!

[tex]

I also have wondered, Tex, if the years of constipation may have done some damage to my colon that may be reflected in the collagenous colitis.

I've wondered the same thing because I had diverticulosis/diverticulitis (surely, because of the decades of C), and interestingly, research has shown that the same type of inflammation that marks LC (lymphocytic infiltration of the mucosa) is present with diverticulitis. That's probably why the dietary changes that doctors have traditionally recommended for diverticulitis, don't work very well (because they miss the foods that are actually the inflammatory culprits). It's even possible, IMO, that diverticulitis is a specialized subclass of MC, that only presents when diverticulosis is present.

Thanks, I've added your test results to our list. Incidentally, Leah had a good point. With all of your test results (IgA units) so low, there is indeed a good chance that you may have selective IgA deficiency. Approximately 1 in 300 people in the general population have that condition, and at least several of our members have discovered that they have the condition. A simple blood test (that your PCP can provide) can determine whether or not your immune system produces normal amounts of immunoglobulin A. For those who have the condition, ELISA tests based on IgA antibodies will always yield false negative results, and as Leah pointed out, the EnteroLab tests are based on the detection of IgA antibodies. Also, the classic celiac blood tests are based on the detection of a combination of IgA and IgG antibodies in the blood, but most people who have selective IgA deficiency will also receive a false negative result on that blood test, unfortunately.

Tex