Needing advice

[KSH]

Hello! I am new to this site and very thankful for all the information and support! No one understands what it's like to live with this disease unless you have it!

I was diagnosed with collagenous colitis 11 years ago, after I tested positive for c. difficile bacteria. After the c. diff cleared up I couldn't get rid of the diarrhea so my doctor ordered colonoscopy and found that I had collagenous colitis, probably as a result of the c. diff infection. I was only 32 at the time. My doctor put me on Entocort for a month and it worked wonderfully. When I came off the Entocort I was in remission for almost a year. However, since then I have not been able to regain remission without entocort, and when I come off of it the symptoms return within about 2 weeks. I was reading in your book, Tex, that a lot of people need to be on Entocort for long periods of time. I have never been on for more than 6 weeks. My concern with that is that I don't want to build a resistance to this drug since it's about the only thing that really seems to help me when my symptoms are unbearable.

About a year and a half ago I started seeing a doctor of integrated medicine that has been very helpful. I went through the ALCAT allergy testing and the finding were interesting. As a result, she has me on supplements and a low inflammation diet, as well as avoiding the foods that showed up on my extreme and moderate sensitivity lists. Over the course of the last year my ANA number in my bloodwork has been negative, and my blood numbers have improved (yay!) but my colitis symptoms still exist. I am trying to manage the with one immodium per day, but I still have 6-7 bowl movements per day with the immodium. I recently changed GI doctors and he wants me to start on Apriso because he's concerned that having this level of inflammation for as many years as I have is not good--especially given that my symptoms have gotten worse, not better, over the last 11 years. I have been trying to avoid taking these long term drugs with the hope of being able to manage the symptoms with diet but I can't seem to make it happen. I'm wondering if anyone has any suggestions for me?

Thank you!

[tex]

Hi K,

Welcome to the forum. The problem with budesonide is not being on it, the risk of loss of efficacy lies in stopping treatments and then restarting them. Every time we stop taking it and then start again, corticosteroids become less and less effective until they eventually become ineffective for us. This is mentioned in the book on page 60. This implies that remaining on a very low dose (3 mg every 4 or 5 days) might maintain efficacy, but this has never been substantiated by research.

If you want to test for food sensitivities that matter as far your digestive system is concerned, forget the ALCAT tests and order EnteroLab stool testing. EnteroLab offers the only food sensitivity tests that are reliable, accurate, and repeatable. Virtually all of us are sensitive to gluten, most of us are sensitive to all dairy products, and soy, and some of us are sensitive to eggs and other foods. After we cut these foods out of our diets, our gut begins to heal, and at some point the symptoms will stop. I'm not promoting that lab — I have nothing to do with it except as a well-satisfied customer.

What foods are you eating? If your diet is clean, the problem could be histamine build-up. It's a problem for many of us who have had MC for a while.

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

Tex

[Gabes-Apg]

Welcome
in line with Tex's reply what supplements did the integrative doctor put you on??
have you had any blood tests to check Vit D3 levels etc..

[KSH]

Hi Gabes,

Thanks for the response. My intergated MD has me on Vit D3, Metagenics UltraGI Replenish, iron supplement, Rheumate (which is a combination of Folate, B12 and Curcumnoid tumerone complex), SPM Active specialized pro-resolving mediators, and double strength VSL#3 probiotic.

K

[KSH]

Tex,

Thanks for the response. I'm intrigued by your histamine build up theory although I must admit I don't fully understand it. I read in some previous posts about taking a daily Zyrtec. Does that resolve the underlying build up issue or just manage the symptoms?

Regarding Enterolab, I'm not opposed to having the tests run again but I do wonder why there is such variability in the labs? I spent almost $1000 getting the ALCAT food/chemical/mold sensitivities tests done (both stool and blood). I did research and it seemed they were a well known, reputable lab. The results were interesting but I can't say that I've seen a huge difference in symptoms since removing these foods from my diet. My results didn't show a gluten, dairy or egg allergy, but I am moderately sensitive to soy. Since reading your book I have tried to eliminate gluten and dairy from my diet, although I never ate much dairy or gluten to begin with except for the occasional slice of pizza or cheese and crackers at a party. You asked if I eat a 'clean' diet. I would say that I do based on what I know sets me off. I eat very little sugar or processed foods. My diet is mostly Paleo, but with less raw veggies (I usually roast them) and nuts than the average Paleo follower. I use olive oil for most everything.

I guess what I'm really trying to figure out is if I need to try the Apriso for a while to get the inflammation down so I can 'reset' my gut. It seems that I'm so inflammed right now that I can't get ahead of this on my own. I can't find a doctor that can tell me if this condition typically gets worse over time--but that seems to be what has happened to me despite the dietary changes and addition of supplements. The diet and supplements have helped my blood numbers, which I assume means that I'm absorbing better, but the WD won't seem to go away.

Thanks for any help you can offer!
K

[tex]

Does that resolve the underlying build up issue or just manage the symptoms?

It just treats the symptoms by preventing some of the the antigens from attaching to the type 1 histamine receptors, thus preventing some of the mast cells from releasing more histamine. It doesn't lower histamine levels — it just slows down the increase of histamine levels. You have to minimize high-histamine foods in your diet in order to address the cause of the problem. There's a lot more to histamine issues with MC than meets the eye. My next book discusses mast cell/histamine issues in detail.

I won't waste time arguing about test appropriateness or relative accuracy, but IMO, based on the validity of test results for determining food sensitivities for MC patients, Enterolab is the only game in town, and tests offered by other labs may be fine for other purposes, but (comparatively) they're a waste of time and money for detecting food sensitivities associated with MC.

I can't tell by your response whether or not you are 100 % GF (you would probably make a good politician - LOL). But if you are not, please be aware that a little gluten is probably worse than a regular diet of gluten. It will amplify your sensitivities to other foods and cause the inflammation to continue to increase.

My best advice is to follow the EnteroLab results 100 % and allow your digestive system time to heal. I can't guarantee that will work, but it has worked for most of us who are now in remission.

Tex

[Erica P-G]

Hi K,

Figuring out what to do and what not to do has been a journey for me. NOTHING works immediately, it all takes TIME...period. I so wanted my healing to be on a fast track, but it never did....annoyed, you bet I was. I still get annoyed when I have fluctuating days of good BM and then a notion of WD slides into the picture.

What I'm trying to get at is you've been doing good, but now it has to be BETTER in order for the gut to heal. I feel like you have been doing well and now your body has had just enough inflammation that the apple cart is upset now...so now you will really need to decide to bite the bullet and go gluten, dairy, soy and egg free 100% for a good stretch of time in order to get some healing under your belt that is needed at this time. This also means that you will mostly likely need to maintain this diet and if you are lucky you'll be able to add some egg back into the diet, but everything else is off the table now, you have finally reached the tipping point of no return when it comes to gluten, dairy, and soy.....your body is officially on alert when it comes to the proteins in gluten, dairy and soy so now whenever you ingest those things you heighten your immune system and that sets off a round of inflammation.

I'm slowly learning more and more about the dos and don'ts to MC...it's a rough acceptance but I'm getting it, and with it comes many altering feelings and side effects that I maneuver around with its possibilities all the time. I wish the best for you and hope that as you go thru your path with MC that you keep asking questions too....that is how we are all learning

[KSH]

Hi Tex,

Thanks for clarifying about the histamines. Sorry to confuse you about my gluten status. Since my ALCAT testing didn't show any gluten sensitivities I had not removed gluten from my diet until I read your book, but I never did that much of it to begin with. I am totally gluten free now, but it's only been a few weeks. It's good to know that even a small amount of gluten is worse than a regular diet of it. I didn't realize that.

I will probably end up doing the Enterolabs. Any idea how much they are? Will I need to go through a doctor to have them done?

K

[tex]

You can order the EnteroLab tests yourself (as long as you don't live in the states of New York or Maryland.) But it's usually easier to get your insurance to pay for the tests if you can persuade a doctor to order them for you. Unfortunately, most physicians aren't familiar with the lab so they won't order from them. If you're not concerned about insurance, it's easy to order them yourself. Most members order the A1 + C1 Panels:

https://www.enterolab.com/StaticPages/T ... #PanelA1C1

If your concerned about insurance . . . if you call the lab, they can give you the insurance codes for the tests, and then you can call your insurance company to see if they will pay for the tests. The price for the package is $539. They had a special discounted price over the holidays. I assume it's ended, but it doesn't hurt to ask.

Tex

[KSH]

Erica,

Thanks for your empathy and kind words of encouragement. Yes, this is a frustrating disease and yes, I want faster results! I want to feel a positive difference when I don't eat certain foods but I don't. I'm coming to the slow realization that it may just take a long time of doing the right thing to see the any kind of results. Up to now I have tried short term eliminations of certain foods but haven't felt much different, so I assumed that I wasn't allergic/sensitive to them. My negative ALCAT tests just confirmed my belief that I wasn't allergic to gluten, eggs or dairy so I have just kept eating them---until a few weeks ago. When I joined this site and started reading about other people's experiences I began to realize that I might have been inflicting more damage on my intestines all these years without even realilzing it. I appreciate all the feedback and help this site offers because so many times I've felt totally alone in this fight.

K

[Gabes-Apg]

KSH,
have you read the posts in the member success stories area? this will give you an idea of what others have done, and how long it took.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71


the mental and emotional aspects of acceptance of life with MC, and the time healing will take is just as important as getting the eating plan right and supplements right.
there are some good suggestions in the good reads area of the guidelines to recovery
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22350

[KSH]

tex

Hi Tex, I did the Entero Lab testing and wanted to pass along the results since I think you're keeping track for research purposes. It seems I am gluten and dairy intolerant. Interestingly I seem to have a reaction to tuna also.


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

Fecal Anti-gliadin IgA 66 Units (Normal Range is less than 10 Units)

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

Fecal Anti-ovalbumin (chicken egg) IgA 9 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 6 Units (Normal Range is less than 10 Units)

Mean Value # Antigenic Foods 8 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 8 Units (Normal Range is less than 10 Units)

Grains:
Grain toward which you displayed the most immunologic reactivity: Oat
Grain toward which you displayed intermediate immunologic reactivity: Rice

Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna

Thanks for all the time you put in to help fellow MCers!
Kelly

[carolm]

Hi K,
I had Enterolab tests done first and was greatly reactive to gluten and soy followed by dairy and eggs. I eliminated all of them from my diet. Two years later I had MRT testing done (which is the newer version of Alcat) and it showed wheat, barley and rye were not a problem for me. I of course knew how incorrect that really was for me.
Enterolab and Alcat (or MRT) don’t measure the same thing so it’s not surprising they disagree. In my experience Enterolab was the most essential. Those results were what put me on the path to remission. The MRT testing was not that valuable in the long haul. You are smart to have followed up with Enterolab tests. Gluten is indeed a problem for you after all and that’s important to know in order to heal.

Best wishes,
Carol

[tex]

Hi Kelly,

I apparently forgot to mention this originally. You had an overall score of 8 on the 11 other antigenic foods (the C1 test Panel) so tuna might not be a problem for you after all.

Thanks, I've added your results to the list.

Tex