My colitis journey has begun

[koksvik]

My name is Rolf. I am a Norwegian male living in the Netherlands. My troubles began on 22 Aug with severe watery diarrhea. I assumed it would go away after a couple of days, but it turned out to be persistent. I was at a loss to understand what could cause this and went through my list of food, drink and supplements looking for a clue. On 14 Sep I decided to cut out alcohol to see if that could be the irritant, but it did not change anything.

After I had read what I could about chronic diarrhea I decided to see my family doctor, huisarts, GP or whatever you like to call him. On 22 Sep I saw him and he sent me for blood and feces tests as he suspected an infection. He also sent me for an ultrasound scan which I got done on 25 Sep. The scan only showed up some diverticula which was not of concern.

On 30 Sep my GP told me that all the tests were negative and that he suspected a virus. That is a standard diagnosis in this country if they cannot think of a reasonable cause. He told me to take Imodium (loperamide) and to stop all the supplements I was taking including probiotics. Everything I have read about chronic diarrhea clearly states that Imodium should only be used for acute diarrhea, but I went along with his instructions more out of curiosity than of conviction.

On 9 Oct we were having dinner in the restaurant where we stayed for a holiday in Croatia. I had to go for a pee, but about halfway to the toilet I felt liquid running down my legs. I thought it was diarrhea, but it was blood. I had no warning and could do nothing to stop it. My clothes were a mess and I had to go to the room and get changed and washed. I called in a doctor from Dubrovnik who prescribed antibiotics, imodium and probiotics. He told me to eat nothing but stewed apples with cinnamon for two days and have a colonoscopy when I got back home. The holiday passed with no further bloody drama, but none of the remedies made any difference to the diarrhea.

On 21 Oct I saw my GP again and he referred me to a local clinic for a colonoscopy which I had on 12 Nov. The doctor saw nothing abnormal apart from some diverticula, but he took some tissue samples for a biopsy. On 20 Nov my GP informed me that the biopsy showed that I have Microscopic Lymphocytic Colitis. This did not really surprise me as I had already worked out that it must be colitis. He referred me to the Gastroenterology department in a local hospital, but he did not tell me why. The appointment is for 16 Dec, but the hospital has also not told me what they are planning to do to me. This is an appointment I am really looking forward to as it seems the medical procession wants to take me over without giving me any information.

Having read a lot of stories on this website I eliminated caffeine, alcohol, gluten and dairy from my diet as of 23 Nov. I had already been gluten free for a year in 2014 for another complaint, without feeling any different, so I do not expect that to be of importance. I think dairy-free is also a no starter, but we will see. I have now switched to goat and sheep products and do not miss cow's milk products. What I have not found any information about on this site is the effect of caffeine and alcohol. Caffeine is not a problem because I get excellent decaffeinated coffee here and the selection of herbal and fruit teas is very extensive. Alcohol is a different matter as I am quite a wine buff and I have not seen any comments on this from other members, so any comments would be useful.

For the colitis I take probiotics, boswellia, ashwaganda, quercetine, bromelaïne, hops, turmeric, ginger and glutamine as most of these are anti-inflammatories.

To suffer from colitis is annoying because I have to plan my days based on knowledge of toilet locations. Most days I have emptied myself at 9 am so it is not so critical through the day, although I am not ready to take too many chances yet. I don't find it painful and what some of you call "battery acid diarrhea" does not happen more than roughly once a month. By now my bowel gives me notice to find a potty in time so I have only had the one embarrassing moment in Croatia. The biggest problem is that it sometimes ruins my sleep and I wake up feeling very weak and tired.

I see another doctor for bursitis in my hip. He takes a different approach to medical problems than our normal doctors. He took an interest in my colitis and suggested I could be suffering from a fungal infection. I have now sent off another feces sample for a fungal check and I should have the results in a week or two. It will be interesting to see if anything comes up.

My sympathies are with all my fellow sufferers. I can see that some of you are suffering a lot more than I am. I hope my story can be of some help to some sufferers.

[Lilja]

Hi Rolf,

You seem to have "cracked the code" dietwise, but are you sure that the decaffinated coffee is glutenfree? I know other members of this board have a hard time digesting coffe powder (like Nestlé) , and they suspect that there is some ingredient in the coffee that upsets their stomach.

Are you taking any supplements? While the gut is healing, you'd be better off limiting the supplements to vitamin high value D3 and Magnesium.

I'm sure other members will add some more advice.

My best wishes for you!

PS: I can have some white wine. Red wine however, seems harder to my stomach.

Beste hilsen fra
Lilja

[koksvik]

Hi Lilja,

Thanks for the advice. I use decaffeinated Nespresso capsules so I don't think there will be any gluten in them. My stomach certainly does not object and did not object to normal coffee either before I went caffeine free.

For supplements I take Glutamine for leaky gut and I take the anti-inflammatories I listed in my post. I think these are important for battling the colitis. I take a high strength multivitamin and I also take magnesium and calcium along with glucosamine, condroïtine and MSM for the joints. I also take a high strength Omega-3 and a gram of Vit C.

The other doctor I mentioned is an Orthomolecular Therapist and he agrees with this regimen. He is going to give me a bunch of enzymes next week.

Ha det bra,
Rolf

[tex]

Hello Rolf,

Welcome to our Internet family of MC students. We learn from each other, by sharing experiences, how to treat this disease, and how to live with it.

I'm concerned by your mention of the incident with colonic bleeding. MC does not cause bleeding. Did your doctors ever determine a reason for that bleeding episode? The reason I bring this up is because I happen to have a genetic defect that predisposes some of the male members of my family to a risk of massive colonic bleeding. Both my father and an uncle bled to death in a hospital because of this issue. The bleeding can start and stop at any time. It struck them in their fifth and sixth decades of life. It almost got me five years ago, but fortunately when I got to the ER I told the doctors about my family history, and so when the bleeding started a second time, as agreed upon, because they couldn't pinpoint the source of the bleed, they removed my colon to save my life. I don't recall the name of the syndrome, but it is rare and usually fatal, so I thought you should be aware of it.

It's possible that your bleeding might have been caused by irritated hemorrhoids, which is a common problem with MC.

Also, please be aware that when treating MC, less is more. By that I mean that the fewer supplements we take, and the simpler and blander our diet while we are recovering, the faster and more reliably we recover. The problem with taking so many supplements and enzymes is that we tend to react to many of those products while we are still recovering, and that can prevent us from ever recovering. After we are in remission, we are usually much better able to tolerate supplements, enzymes, probiotics, etc. But during recovery, too many cooks can spoil the broth for sure, because if we take enough supplements, it is almost guaranteed that 1 or more of them will prevent us from reaching remission.

It's always difficult to convince new members of that problem, because naturopathic doctors especially, almost always try to pile on the supplements when treating digestive system issues. But over the years, many members here have posted about how they regret spending so much money on supplements, when all it accomplished was to deplete their bank accounts and delay their healing.

When MC is active, the gut is extremely sensitive, and it will not tolerate many items that may be just fine, after we are in remission. But we have to allow the gut to heal enough to reach remission before we can enjoy the benefits of that decreased sensitivity. We cannot force the disease to go into remission, no matter what we do. We can only remove all of the offenders from our diet, so that our gut will be able to heal by means of it's built in capabilities. Then after we have been in remission for a while, we may be able to add some of those supplements to enhance healing. But be very careful if you do that, because many recoveries have been aborted because someone started taking a supplement that their doctor claimed would help them to heal faster. Instead of helping, sometimes it causes them to have to start over.

Tex

[Gabes-Apg]

Rolf
welcome to the group - sympathies that you had to find us......

in line with Tex's response, the supplements are you are taking

boswellia, ashwaganda, quercetine, bromelaïne, hops, turmeric, ginger and glutamine

I know there is lots of research recommending these for Colitis. What we have found thus far is that MC is not like other Colitis/IBD conditions. The inflammation process is different.

my suggestion would be to stop them for now, calm the gut a bit and in time test them one at a time.

Coffee wise, I have never had issues with coffee, albeit i do buy organic beans and use italian stovetop brewer with filtered water.
Decafinated coffee, cheaper forms can have quite a few chemicals in them.
and as Lilja mentioned processed/instant coffees can have traces of gluten etc.

Also - double check the herbal teas, many contain fillers based on soy etc. Also some herbal teas stimulate the immune system, in our case we dont want to over stimulate the immune system.

in saying that, there are some that do have issues with coffee. that is the tricky and draining part of MC. There is no black and white list of what works, what doesnt. It is different for each individual. each person has to do trial and error.

Have you had your Vit D3 levels checked? do you take Vit D3?

Alcohol wise - alcohol is a highly inflammatory item to the gut, regardless if you have an IBD or not, so for those with an IBD it can make the inflammation more intense. The other aspect is that things like wine can be high in histamine, which is a common inflammatory trigger for MC'ers...
once the inflammation has settled down, and the gut has healed, then many can have small amounts of wine (best to avoid any beer or spirits where there is gluten or grain based alcohols)
I have found a low alcohol wine that does not cause reactions. others will take anti-histamines before drinking wine to minimise inflammation happening.

swapping to goat and sheep products - they still contain caesin type proteins (which is a key part of the inflammation reaction to dairy and what the body struggles to digest)
if it was me, I would avoid them for now, let the gut settle a bit and down the track try small amount and see if they are an issue or not.

hope this helps and answers some of your questions.
Regards

[Marcia K]

Hello, Rolf. Welcome to our group. My first thought as well was the supplements. My cousin sees a functional medicine doctor for leaky gut and she told me about a supplement that she takes. I took it and it made my stomach hurt, and that was after I had been healing for quite some time. I have LC as well and there is not a "one size fits all" path to recovery. Good luck on your journey, you have come to the right place for help and support.

[tex]

Rolf,

In line with what Gabes mentioned about sheep and goat's milk products — every so often a new member here will try that, but unfortunately it never works. The molecular composition of the casein in the milk from cattle, sheep, and goats is too similar to be safe for us. They contain either very similar or identical peptides that cause us to react. Theoretically however, there are other safe milks available, but I'm not aware of anyone who has actually tested these.

Based on DNA differences, there is a very good possibility that milk from cameloids (camels, alpacas, guannacos, llamas, and vicuñas) might be safe, because they are genetically different from all of the other milk-producing mammals. It's also possible that equine milk (horses, donkeys, asses, zebras, etc.) might be safe, but no one here has tried that, either. Most members here use either coconut milk, almond milk, hemp milk, or rice milk as a substitute for cow's milk.

It's true that the type of casein found in most sheep and goat milk contains less of the peptides that cause us to react, but unfortunately that is of little value regarding food sensitivities, because we react to foods on a molecular level (in other words, even just a few molecules may be enough to trigger a reaction for many/most of us). Food sensitivities are somewhat like pregnancy — either we are sensitive to a food, or we are not. There are no meaningful stages in between.

Tex

[crervin]

Welcome Rolf, hope you get relief soon! I can't take most medicines or supplements because most contain corn (usually in hidden form), it causes D for me. I have a good day when I've taken nothing.....

[koksvik]

Thanks for all your comments. To start with the bleeding, it happened two months ago and was a one off. I have not had blood in the feces before or after so I ignore it unless it happens again. The doctor in Croatia suggested it could be hemorrhoids, but there was no pain so it does not fit with my experience of hemorrhoids twenty years ago. The colonoscopy found no explanation for it either, so it remains a mystery so far. What intrigues me now is how you Tex can have colitis if your colon has been removed.

As to supplements I understand the reasoning of less is more, but I would like to say that my doctor (not my GP) is a molecular therapist, not a naturopath. He has done wonders to my health for other problems, so naturally I have a great deal of faith in him. He is a fully qualified doctor who in addition to his training has specialized in acupuncture, manual therapy, molecular therapy and neural therapy. To give you an example; last year a local rheumatologist diagnosed me with osteo-arthritis and prescribed 3 grams of paracetamol a day for 3 months. Since I experienced severe muscle pains and no joint pains I was rather horrified of that diagnosis. I saw my alternative doctor who treated me with neural therapy and within 3 months I was pain free. If anyone needs 270 grams of paracetamol they know where to find it. Please don't be offended, but I shall see how he gets on with me first. Anyway, my medical insurance covers the supplements.

As to allergies, I am not allergic to anything and never have been. I might be intolerant to something in my diet and that is why I am now caffeine, alcohol, gluten and dairy free and on Gabes advice I have cut out goat and sheep as well. I don't think gluten is involved as I went gluten free for a year in 2014 and noticed no difference, but the other three could be candidates. And yes, I do take D3 and I have had it checked twice in the last year and both were normal.

Here is something that suddenly came to my mind. What causes the inflammation, if that is indeed what it is? I also have COPD and in April I was prescribed a Spiriva inhaler. It made me very constipated so after 6 weeks I stopped using it. In July I started using it again to see if the side-effects have changed. Then one month later the diarrhea began. Does anyone have any experience of this and/or similar medications and could this possibly cause colitis?

Rolf

[Gabes-Apg]

Rolf

you are very very lucky to have a well researched functional doctor - they are rare...

there is a difference between Allergies and Intolerances
https://www.allergyuk.org/food-intolera ... ntolerance

Most MC'ers are 'Intolerant' to lots of ingredients. I am wondering that when you previously stopped the gluten and didnt notice a difference, it might be because you were still having other ingredients that were causing high levels of inflammation.

Here is something that suddenly came to my mind. What causes the inflammation,

Tex will be able to provide the science to this.

There are multiple reasons for inflammation in the body. My research and learnings thus far is that it is not black and white. There is a different matrix of reasons for each individual.
for me, with my casemix of health issues, i am sure the MC is a symptom of the root cause issues.

Medication induced Colitis is common, and quite a few people see resolution of symptoms once the offending medication is ceased.

[tex]

What intrigues me now is how you Tex can have colitis if your colon has been removed.

That's an excellent question, and it has been asked (and answered) before in the thread at the following link. The problem is that MC was incorrectly described in the first place as "colitis", and no one has ever bothered to correct that mistake. There are many published medical research articles that demonstrate that in most cases, the small intestine is just as inflamed as the colon, and many of us also have stomach inflammation exactly the same as the inflammation in the colon (IOW by means of lymphocytic infiltration into the epithelia of the stomach).

Actually MC can involve inflammation not only in the colon, but in any part of the digestive system. And despite the fact that I had a colectomy over 5 years ago, I recently developed a sensitivity to soy, as verified by the production of antibodies against soy on an ELISA IgA antibody stool test. How could that possibly happen unless the small intestine is just as vulnerable to MC as the colon?

Question for Tex

It's great to have faith in your doctor. And no, we certainly won't be offended if you choose to follow your doctor's advice. But this is a 2-way street, so please do not be offended if our treatment suggestions do not work for you if you selectively choose to ignore various important aspects. Microscopic colitis is a very complex and unforgiving disease.

The primary mode of inflammation in MC is lymphocytic infiltration into the epithelia of the intestines, as a result of the activation of specific antibodies caused by increased intestinal permeability that allows partially-digested peptides to enter the bloodstream, thus provoking the immune system to produce antibodies against them.

The secondary mode of inflammation (undocumented by published medical studies) appears to be inappropriate mast cell degranulation, known as mast cell activation disorder (MCAD). But MCAD is not present in all cases.

Here is a link to the FDA adverse reaction reports from physicians, associating Spiriva and colitis:

http://www.fda-reports.com/spiriva/reac ... page1.html

Tex

[koksvik]

Thanks for that Tex. An interesting point to put to the Gastroenterologist next week.

Rolf

[HappyBird]

Hello Rolf.........

Welcome to the group - sorry it was necessary for you to find us but so glad you did. We all are in the same boat and fully understand first hand about your problem. It's just over three months ago that I started my my elimination diet and took myself out of a terrible situation with the help received reading posts and asking questions on this forum.

I too had to self diagnose my MC and take responsibility for my health inspite of the NHS and the Private Medical Sector in the UK.

It's a long journey, take it one step at a time. The sooner you begin an elimination regime the sooner your life will change.

[tex]

Rolf,

In case you don't have a copy of my book, here is a quote from pages 110–112 (in chapter 9) that contains some information relevant to this topic that you might find interesting. Note that 30 lymphocytes per 100 enterocytes (mentioned in the first paragraph in the quoted material below, in reference to an early stage of celiac disease) is actually the diagnostic marker used to diagnose lymphocytic colitis.

Are celiac disease and microscopic colitis actually symptoms of another disease?
Many research reports point out that the laboratory markers and the clinical symptoms of the two syndromes are very similar. Both celiac disease and microscopic colitis are associated with an elevated lymphocyte count in the mucosa of the intestine. With celiac disease, the lymphocytic infiltration eventually leads to villus atrophy in the small intestine. This is typically true if the patient has either a DQ2 or a DQ8 gene.11 Note that an early stage of celiac disease, known as Marsh stage 1 enteropathy, is marked by an intraepithelial lymphocyte count greater than 30 lymphocytes per 100 enterocytes.12

However, even though histological changes in the colon are not a diagnostic criteria for celiac disease, researchers have long known that with celiac disease, not only is the small intestine inflamed, but typically so is the colon and the stomach.13 As evidence of this, Wolber et al. (1990) stated:

These findings indicate that sprue-associated colonic lymphocytosis and lymphocytic colitis are histologically, quantitatively, and immunohistochemically indistinguishable, that the epithelial T cell infiltration of celiac sprue occurs in glandular mucosa at all levels of the gastrointestinal tract, and that colonic subepithelial collagen deposition in patients with celiac sprue is an infrequent occurrence. These findings also suggest that gastrointestinal epithelial T cell infiltration may be an immunologic response that is common in individuals sensitized to absorbed lumenal antigens, and that colonic lymphocytosis may occur as a response to a number of antigens, including gluten. (p. 1092)

In 1998 Fine et al. concluded, “In contrast, colonic histopathology in refractory sprue is indistinguishable from lymphocytic colitis, although immunohistochemical differences do exist.” (p. 1433).14 Clearly then, both celiac disease and microscopic colitis cause identical cellular changes in the mucosa of the colon. And even though no mention of the small intestine is made in the diagnostic criteria for microscopic colitis, researchers have found that lymphocytic infiltration is frequently present in the small intestine of MC patients, and in some cases, villus damage is sufficient to justify a diagnosis of celiac disease. Even when the formal diagnostic criteria for celiac disease are not met, a significant number (over 10 %) of microscopic colitis patients show at least a Marsh 1 level of villus damage upon biopsy analysis of their small intestine.15

In fact, small intestinal involvement is quite common with MC.16 Other researchers have noted that the T helper cell type 1 mucosal cytokine response pattern exhibited by microscopic colitis is very similar to the response pattern of celiac disease.17 Most researchers have been unsure how to classify this type of information, since it implies non-celiac gluten sensitivity.18 Often, biopsy samples of the terminal ileum are taken during a colonoscopy exam, and upon examination under a microscope, those samples typically show lymphocytic infiltration for most patients who have MC.19

Koskela (2011) even noted that in general, the duodenum of patients with MC, excluding any patients who have celiac disease, have shorter villi than controls.19 Of course since no villi exist in the colon, villus atrophy cannot occur in the colon, but that is irrelevant to this comparison. According to Stewart et al. (2011) the association between celiac disease and microscopic colitis is so strong, that for someone diagnosed with either of the two diseases, the odds that they will also meet the diagnostic criteria of the other disease, has been shown to be approximately 50 times the level that would typically be expected in the general population.20

And here are published medical research references 11-20 from that quote. Your physician might find these to be interesting reading if he doubts what I am saying.

11. Biagi, F., Luinetti, O., Campanella, J., Klersy, C., Zambelli, C., Villanacci, V., . . . Corazza, G. R. (2004). Intraepithelial lymphocytes in the villous tip: Do they indicate potential coeliac disease? Journal of Clinical Pathology, 57(8), 835–839. doi:10.1136/jcp.2003.013607

12. Dickey, W. (2008, September). Celiac disease and the colon. Practical Gastroenterology 44(1), 40–45. Retrieved from http://www.practicalgastro.com/pdf/Sept ... rticle.pdf

13. Wolber, R., Owen, D., & Freeman, H. (1990). Colonic lymphocytosis in patients with celiac sprue. Human Pathology, 21(11), 1092–1096. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/2227917

14. Fine, K. D., Lee, E. L., & Meyer, R. L. (1998). Colonic histopathology in untreated celiac sprue or refractory sprue: is it lymphocytic colitis or colonic lymphocytosis? Human Pathology, 29(12), 1433–1440. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/9865829

15. Simondi, D., Pellicano, R., Reggiani, S., Pallavicino, F., David, E., Sguazzini, C., . . . Astegiano, M. (2010). A retrospective study on a cohort of patients with lymphocytic colitis. Spanish Journal of Gastroenterology, 102(6), 381–384. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/20575599

16. Moayyedi, P., O'Mahony, S., Jackson, P., Lynch, D. A., Dixon, M. F., & Axon, A. T. (1997). Small intestine in lymphocytic and collagenous colitis: mucosal morphology, permeability, and secretory immunity to gliadin. Journal of Clinical Pathology, 50(6), 527–529. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC500002/

17. Tagkalidis, P. P., Gibson, P. R., & Bhathal, P. S. (2007). Microscopic colitis demonstrates a T helper cell type 1 mucosal cytokine profile. Journal of Clinical Pathology, 60(4), 382–387. doi:10.1136/jcp.2005.036376

18. Vande Voort, J. L., Murray, J. A., Lahr, B. D., Van Dyke, C. T., Kroning, C. M., Moore, B., & Wu, T-T. (2009). Lymphocytic duodenosis and the spectrum of celiac disease. American Journal of Gastroenterology, 104(1), 142–148. doi:10.1038/ajg.2008.7

19. Koskela, R. (2011). Microscopic colitis: Clinical features and gastroduodenal and immunogenic findings. (Doctoral dissertation, University of Oulu). Retrieved from http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf

20. Stewart, M., Andrews, C. N., Urbanski, S., Beck, P. L., & Storr, M. (2011). The association of coeliac disease and microscopic colitis: A large population-based study. Alimentary Pharmacology & Therapeutics, 33(12), 1340–1349. Retrieved from http://www.medscape.com/viewarticle/743 ... mp&spon=20

The disease that this discussion alludes to is gluten sensitivity (as concluded farther along in chapter 9).

Tex

[koksvik]

Thanks for all that information. When I retired I thought I might have a problem filling my time. You have certainly made sure that will not be the case. Your books are on order and should be here by Friday. That will keep me out of mischief for the weekend. Thanks Tex.

Rolf