Finally diagnosed after almost 20 years

[Tkdmama]

Pleased to be here and happy to finally be diagnosed after all these years. I have to say that it is partially my fault for this because I am not a person to doggedly follow up on things. I would get frustrated and just live with the symptoms. Luckily I have very little pain or gas and I have my own business, so worrying about making it to the bathroom at an office job was not an issue.

So here is my story. Starting having constant D back in my early 30's. I can't even remember how and when exactly it started, but it never felt like something was seriously wrong, so I lived with it for a while. Went to my primary doc who thought it was IBS (shocker, I know) and sent me to a GI who did some tests... colonoscopy, fluoroscopy.... and found nothing except that things were moving very fast. My fluoroscopy took 15 minutes. So I lived with it for a while. Funny story, I gave birth to my daughter a couple of years later and the nurses wanted me to take stool softener so I could poop before I left the hospital. I told them I would not need it, they said take it anyway, I didn't, and of course had the opposite problem for a while of not being able to hold it in. Lucky nurses....

So some more years go by. I try some things on my own, probiotics, fiber, blah blah blah. Another colonoscopy. Still nothing, because nobody ever thought to do a biopsy. Meh.

Fast forward to last year, I turn 50 and I get a new primary doc. He's a DO and his wife's a chiropractor and nutritionist in the same office. I tell them my issues and we start trying a thing called First Line Therapy which involves med foods and a complete elimination diet. Complete. And I have to say that though I physically felt really great, lots of energy, clear head, cleared up some eczema I had, it did nothing for the D. Until I added psyllium husk. (Just wondering if that was a good idea. It's the only thing that partially solidified things some of the time.) And he sent me to a new GI. Of course, me being me, I didn't go until this year. But this guy does the biopsy. And I get the DX!! Finally!! Collagenous (wonder if it wouldn't have gone that far if I'd been dx'd years ago).

And that's were I am now. My primary doc has prescribed Inflammacore once or twice a day and back to the elimination diet. But the GI has prescribed Uceris. A couple of weeks in, the elimination diet still seems to be doing nothing, so I started the Uceris 6 days ago. No side effects so far, but no real change yet either.

I'm very glad to have joined this community, it seems really fun and supportive and I'm looking forward to adding my 2 cents in where I can.

Best,
Mary

[tex]

Hi Mary

Welcome to our internet family. Wow! 20 years is a long time to have to wait for a diagnosis, but I hear you — I'm a procrastinator also. I never would have gone to see a doc if I hadn't been so sick that I couldn't work. But like you, they didn't figure out what was wrong with me, either.

Regarding the psyllium, it probably irritated the inflammation somewhat, but since it's soluble fiber, it's not nearly as bad as insoluble fiber with regard to irritating our already hyper-inflamed guts. And as you say, it will sort of bulk up the D somewhat, to at least give the illusion of helping.

I'm curious — exactly what does that elimination diet include, and how long have you been following it continuously? After 20 years of uninterrupted inflammation, it may take a while for diet changes to bring the inflammation down to a tolerable level, so that your intestines can begin to heal. The Uceris may not be working simply because you have so much inflammation and intestinal damage that it's more than the drug can handle. One of the problems with this disease is that we can't do much serious healing until we eliminate all of the foods that cause us to produce antibodies, and after 20 years of reacting, you may have quite a formidable list of food sensitivities. But that remains to be seen, because we are all different.

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

Tex

[nerdhume]

Welcome Mary, I took Uceris for a couple of months while I sorted out my diet. It stopped the WD for me from the first day. It may help you cope while you do an elimination diet or enterolab tests to determine what foods you are reacting to.

You have come to the right place for information and support...ask anything you like...someone will be able to answer.

[Tkdmama]

Thank you so much for the welcome!

My recent diet history has been mostly paleo, not because of the MC, but because the diet just makes so much sense to me. But last year my doc put me on an allergen elimination diet that I followed to a T for 12 weeks. No gluten (no grains at all, except some occasional white rice), no dairy, no sugar, the doc said legumes were OK but I cut them out too, no eggs, no alcohol, no coffee. Then I added things back starting with eggs. However, nothing improved the D after all that time (except the psyllium that I mentioned, and that was probably just a mask). I think an Enterolab test may be a good idea, because I must be sensitive to something out of the ordinary allergens.

Stopped the Uceris for a couple of days because I just had a nasty bout of food poisoning (just what I needed). But will start back tomorrow.

Thanks again!
Mary

[tex]

Hi Mary,

Sorry about the food poisoning, and I hope that you're finished with that so that you can get on with your recovery. Your doc had the right idea, but like most physicians, she/he may have unrealistic expectations about the time required for recovery. After reacting for 20 years, it may take much longer than 3 months on a diet in order to get results. It took many of us here a year or longer.

And you were also right to avoid the legumes. Though "expert" opinion says that legumes should be safe, and soy lecithins and soy oil should be safe, our experience here (among most members who are sensitive to soy) show that opinion to be incorrect. We do indeed react to those things. Some soy-sensitive members here do not react to all legumes, but they do react to many/most of them.

I definitely agree with you that under the circumstances, you will be much better off by starting with the EnteroLab tests, because they can give you some good, solid information upon which to base your menu selections. If you have been meticulously avoiding certain foods for many months, it's always possible that those foods may result in false negative results, but in many cases we get enough traces of cross-contamination in our diet to produce positive antibody results anyway. And if any of the foods that are currently in your diet show positive test results, then cutting them out of your diet might be the key that starts you on the fast track back to health.

Good luck with your testing and treatment program.

Tex

[Leah]

Welcome mary. Tex is our expert and you might want to buy his book that is pictured in the upper right hand corner of this page. Just click on it. Read as much as you can on this forum. We are a great group of people who help each other each and every day.

My journey started a little over 2 1/2 years ago. I'm a personal trainer/nutrition specialist, so I had no time to "sit home" if I wanted to make a living! The drug that works best for many of us is Entocort ( Budesonide). Once I started that, my D went from 10 times a day to twice in a couple days! At the same time, I also did an elimination diet, but I kept eggs in. No gluten, dairy, fresh fruits and veggies, acid foods, coffee or tea, spicy, sugars...etc. The Entocort started to constipate me, so I lowered the dose. Over time, I just kept slowly lowering the dose until I was off of it completely ( 6 months). When I was on a very low dose, I found that I was reacting to soy, so I took that out along with peanuts and legumes. That helped. I was only going once a day, but it was still soft. So, I decided to try antihistamines. That was the last piece to my puzzle. it worked!

Since then, I have been able to add many foods back into my diet. I have days where I go overboard and things "loosen up", but I'm able to get back to "normal" fairly quickly. There is hope for a bright future! You just have to do the hard work now. The Enterolab tests are a good idea. I couldn't use them because I am IgA deficient, but the results have helped so many people here.

Good luck, stay patient, and keep us posted.
Leah

[Tkdmama]

Hi everyone,

I'm still around, checking the posts every day, but don't have much to add. Still learning a lot.
But here is an update.

My GI doc decided to try me on prednisone. He "guaranteed" that it would work, and quickly. Ha ha. I was on 40mg for 17 days and figured that was enough of a chance. No symptom changes at all. Still working the GF phase of elimination in the meantime. That should take at least 4 months to start working is my understanding. So now I'm tapering the pred, I'm at 20mg now and should be done by next week. Phew. My new scrip is Elavil, and he "guarantees" that this will work quickly. I only started it last night, so we'll see. But I know that this is just a mask, since I think he only prescribed it because a side effect is C (am I correct?). In addition, he actually says that he thinks maybe some other things are going on in there, so I have an endoscopy scheduled for 10/13 where he'll biopsy for celiac (I've had neg blood tests, but know those are inaccurate to say the least).

And that's where I am. Still living life, had a great getaway weekend in the Adirondacks and just dealt with symptoms as I usually do.

Oh, and lucky me, I live in NY, so Enterolab testing arrangements are going to be interesting. The cost is not an issue for me, but I'll try to get my GP to order the tests from them. Meh.

Thanks for everything and I love getting all this new info.

Mary

[tex]

In addition, he actually says that he thinks maybe some other things are going on in there, so I have an endoscopy scheduled for 10/13 where he'll biopsy for celiac (I've had neg blood tests, but know those are inaccurate to say the least).

Sadly, your doc appears to be totally lost and confused. Presumably, he's trying to learn more about the disease by using you as a guinea pig. According to the formal diagnostic criteria for celiac disease, a Marsh 3 level of damage to the villi of the small intestine is required. Research shows that the blood tests will remain negative below that level of damage, and will turn positive when the Marsh 3 stage is reached. Therefore, if your serum tests were negative, the odds of him finding sufficient villus damage to qualify for a formal diagnosis of celiac disease are rather slim — not zero, but slim. This test will almost surely just provide unnecessary stress and inconvenience for you, and transfer money from your insurance company's bank account into your doctor's bank account. No useful information will be gained.

Yes, if your doc orders the EnteroLab tests, you have it made, and your insurance will probably pay for the tests also. Unless he believes in treating MC by diet changes though, the odds of him ordering the tests are probably not good.

Actually, if you have read chapter 9 in my book, you should realize that a celiac diagnosis is irrelevant, because MC trumps celiac disease, and proper treatment for MC will resolve celiac symptoms. In case you don't have a copy of the book, this is what I'm referring to, from pages 110–112:

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

Here are the references noted in that quote, if you would like to learn more about the details:

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

Tex

[JFR]

Hi Mary,

I live in Vermont and have helped 2 people from New York get the Enterolab testing done by ordering the test for them and having it sent to my home and then sending it to them. They then send it back to me and I ship it back to Enterolab. It's worked perfectly each time and I would be happy to do it for you also if your doctor will not order it. Just let me know.

Jean

[Summer S]

Leah,

What did you mean by this?
So, I decided to try antihistamines. That was the last piece to my puzzle. it worked!

You took antihistamines and they fixed your D?

Thanks,

Summer

[Leah]

HI Summer. I guess my answer to that question is yes. Stools became solid after trying the OTC antihistamines. I take an Allegra in the am and a Benadryl in the pm. I am one of us who has more of a histamine/mast cell degranulation problem then I an antibody problem ( I actually don't produce IgA antibodies much at all). So, antihistamines -both H-1 and H-2- help me a lot.

Leah