Brand new at this; striving to figure it all out

Canadacan · Post by **Canadacan** » Mon Jun 05, 2017 4:04 pm

Hi everyone - I just re-read this post, and I apologize in advance for being so wordy. But it is nice to get this all out...

I was diagnosed about 10 days ago with Microscopic Lymphocytic Colitis. I have been reading here on the forum and also on the Foundation Website. I must be in the "denial" / "ignorant" phase, as I had no idea that this might be a chronic illness. It has all happened so fast. I had 2 weeks of awful diarrhea (sudden onset one Sunday night), went to the endocrinologist, got a colonoscopy, diagnosis, was immediately prescribed budesdine for 30 days, told to cut back on gluten and dairy, and come back in 30 days. I've been on the pills for 10 days and since day 4 I am +90% better. Because I have felt like the pills were curing me, I haven't really changed my eating at all. I was thinking that this was just a "fluke" issue that would be resolved as quickly as it started. It has been somewhat of a shock to read everything and begin to get the sense that I may now have a lifelong issue to deal with.

I am 65, exercise strenuously at least 5x per week, great physical health. I've always had a digestive system that didn't object to anything I put into it. Before "D" day, I had a rock solid digestive system. So, my question is, now what do I do? Do I still adjust my eating while on the medication and feeling recovered? Or, do I wait and deal with diet later if it comes back? It is hard to fathom changing my eating. I am pre-disposed to diabetes 2 (runs in family), so I eat a strict diet to keep my glucose in check - low carbs and sugars, and very high on the protein which includes mostly chicken, fish, greek yogurt, eggs, and cheese. I love cheese, and I eat eggs most mornings. I eat tons of greens, including a salad a day and tons of raw and cooked vegies. From what I've read on this forum, everything I eat appears to be highly suspect of being a trigger.

In fact, the diarrhea occurred after I had been on a stringent 4 week program to stick to the above diet and lose a few pounds to improve my glucose count. Maybe there's a correlation?

If it is my diet, at least I have a pretty clear set of food triggers, as I know exactly each type of food I was eating the month before I got sick. It horrifies me to think of cutting out gluten, dairy, and the many other trigger foods, while also avoiding all carbs, fruits and other sugars. I'd like to think that I've got the "one time only" version of colitis, and not the chronic one....(is that even possible)?

I'd appreciate any comments, encouragement, and suggestions you veterans have. Thanks so much!
Canada

Post by **tex** » Mon Jun 05, 2017 4:55 pm

Hi Canada,

Welcome to our Internet family. Maybe you are one of the few who will be lucky enough to go into indefinite spontaneous remission and never have a problem again. However, for most of us that possibility exists only in the minds of GI specialists who are not well acquainted with the realities of what happens to real MC patients out in the real world.

If you are like most of us, when the time comes to end the budesonide treatment, unless you have changed your diet to cut out gluten and casein (and maybe a few other foods), 100 % (not just "mostly), you will relapse back to square one. And you have to change your diet early on (not when it's time to stop the budesonide) because it takes a long time to heal the intestines. Research shows that corticosteroids actually slow down the healing process so budesonide is not going to heal your intestines. But the budesonide will help mask the symptoms while the diet changes heal the gut. You probably won't believe what I say in this post, until you're off the budesonide and you're on your own and the reality of the situation becomes obvious.

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

Tex

JFR · Post by **JFR** » Mon Jun 05, 2017 5:30 pm

Canada - Just so you won't feel alone. I have a family history of type 2 diabetes and I eat a very low carb diet. I eat no sugar, no grains, no fruit. I can't eggs, dairy, soy and other legumes and I can't eat chicken. This is doable and most certainly worth it for me. I am happy to be able to leave my house and have a life which I couldn't have when I was spending my life in the bathroom. Acceptance is the key. Along with working on figuring out our diet, we have to work on transforming our minds into minds of acceptance. Really, it can be done. I now eat lots of salad type greens and other green above ground low carb vegetables but for a long time I kept fiber to a minimum and ate only cooked vegetables in small quantities if at all. The more diligent you are early on in avoiding the foods that cause you trouble the greater your chances that you can add back in some of the green vegetables you like, even raw ones in salads but patience will probably be required.

Jean

Canadacan · Post by **Canadacan** » Mon Jun 05, 2017 10:17 pm

Jean and Tex - thanks so much for the comments. I realize that I am in partial shock because of how sudden this has happened, but I am a realist, so I can quickly get over my shock! What if I go gluten and casein free immediately, and once I go off the meds, keep that up and see how I feel? I can deal with next steps after that depending on how I feel? I avoid the unknown, so like the idea of doing the labs to precisely identify the problematic foods right away. One more thought - I have experienced joint/muscle pain for over a year, gone through all tests, to be told that there is no identified reason, it's been tolerable so I've just tolerated it. I read that casein can cause that. I'm on the road to discovery!
Canada

JFR · Post by **JFR** » Tue Jun 06, 2017 6:55 am

Going gluten and casein free immediately makes a lot of sense, always remembering that the med you are taking can be masking other sensitivities. I never took any meds other than Immodium in large doses. My method was to remove all grains, dairy, soy and eggs immediately. In fact I lived on ground meat for a few weeks. I was desperate. I found the Enterolab testing to be very helpful. The health benefits of avoiding the foods that you are sensitive to go far beyond intestinal problems. Joint pains are certainly one problem that might disappear once you get your diet right. It sounds like you are headed in the right direction.

Jean

Post by **tex** » Tue Jun 06, 2017 7:51 am

As Jean said, joint pains are often associated with this disease, for some of us. Here's how they usually originate (and this is probably true for all autoimmune diseases that cause aching joints, because all AI diseases appear to be caused by food sensitivities):

Research shows that when the genes that predispose to CC/LC/MC are triggered, the genes that predispose to gluten sensitivity are also usually triggered. Gluten sensitivity causes increased intestinal permeability and this allows partially-digested peptides from certain foods (such as gluten, casein, soy, etc.) to enter the bloodstream, which provokes an immune system response (because these peptides are obviously not supposed to be there). The immune system then begins to react to certain proteins in those foods every time they are eaten.

Once they get into the bloodstream, the body has to find a way to get the partially-digested amino acid strings out, because the usual avenues won't work. It can't, for example use the peptides to make new tissue. Only individual amino acids will work for that. And it can't use them as fuel. Only glucose or fat will work for that. The kidneys and the liver don't know what to do with them, so as they accumulate, the body begins to dump them wherever it can, in joints and organs. They aren't supposed to be there, obviously, and they soon begin to cause irritation and inflammation. In Other words, they're a by-product (symptom) of leaky gut. That's why MC sometimes makes some people feel as if they have the flu, or as if they have fibromyalgia, or arthritis.

I hope that this is helpful.

Canadacan · Post by **Canadacan** » Wed Jun 07, 2017 6:49 pm

Hi all - I've ordered your book Tex, and am looking forward to reading it. I've started magnesium and upped my D intake. I've cut out gluten and casein (still working on figuring out how to identify these ingredients in everything)! I'm 2 weeks on Budesonide and feel great, but I do get a few hints that I'm not 100% cured and that the drug may be masking some of the symptoms.

I want to have Enterolab test done. Can you recommend which is the best to do? Since my "slate is clean" regarding what foods I previously had trouble with, I suspect I may need them all Maybe the Test Panels A1 + C1: Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel?

Also, has anyone had experience getting Insurance coverage? Does it make sense to ask my doctor to order the tests? I'm on Medicare and don't know if I should even bother trying to get any reimbursement.

Thanks in advance for any thoughts you have!

Gabes-Apg · Post by **Gabes-Apg** » Wed Jun 07, 2017 6:58 pm

small amount of people have had luck getting the enterolab subsidised by insurance - if you use the search function you may be able to find these posts.
majority of people have stated their doctor does not see the science or benefit of the testing and do not acknowledge the results.

A1 and C1 is the most common test done and best way to provide good foundation of information as to 'safest' eating plan etc

best way to avoid gluten and dairy is avoid processed food items. Eating home cooked, whole food based meals, as per our suggested eating plan will protect you from hidden gluten/dairy etc.
This also applies to other ingredients that can be troublesome for MC'ers when healing. By eating home cooked whole food based meals (protein with a few safe veges) there is no risk of hidden ingredients like citric acid, chemical sugars, soy, preservatives etc.
we also encourage people to replace key items like chopping boards, cookware, utensils - to remove any risk of residual gluten/dairy.

JFR · Post by **JFR** » Wed Jun 07, 2017 7:16 pm

Gabes-Apg wrote: best way to avoid gluten and dairy is avoid processed food items. Eating home cooked, whole food based meals, as per our suggested eating plan will protect you from hidden gluten/dairy etc.
This also applies to other ingredients that can be troublesome for MC'ers when healing. By eating home cooked whole food based meals (protein with a few safe veges) there is no risk of hidden ingredients like citric acid, chemical sugars, soy, preservatives etc.

I say that I eat single ingredient foods, that is foods that have no ingredient lists.

Jean

Post by **tex** » Wed Jun 07, 2017 8:41 pm

Canada,

Sounds as though you're off to a good start on your recovery. Many allotropic doctors do not believe in using the stool tests, but you have to remember that mainstream doctors have no formal training in nutrition and diet so very few of them know anything about food sensitivities, and how to diagnose them. Still, it doesn't hurt to ask, because if your doctor orders the test your insurance will probably pay for it.

If you have to order the tests yourself, you still might be able to get insurance coverage. If you call or email EnteroLab, they can tell you the correct reference numbers for the tests. You can then call your insurance company and see if they will pay for those tests. More and more insurance companies are willing to pay all or part of the cost of the tests.

Yes, as Gabes said, the A1 + C1 Panels are the most popular tests.

Tex

Canadacan · Post by **Canadacan** » Thu Jun 08, 2017 1:08 pm

Hi again - I've been on Budesonide for 2 weeks (3 tablets per day). The prescription goes for 30 days. My next follow up appointment with my GI doctor is set for a week after my 30 day course of Budesonide ends. I called his office asking if I am supposed to taper down the dosage (due to what I've read here), or move the appointment up so I can be seen before ending the treatment. He said that there will be no tapering off; I'm just supposed to stop after 30 days and see him a week later to discuss follow up. Is this normal? It just seems to go against what I have been reading. Thanks.

Gabes-Apg · Post by **Gabes-Apg** » Thu Jun 08, 2017 2:33 pm

Sadly, yes this is common. GI specialists do not encourage taper.
and the patients that follow this protocol, generally have a return of symptoms once they stop the budesonide without a taper

that is why we a) encourage the eating plan changes - as this is fairly essential for long term reduction of symptoms and b) also recommend the taper again to optimise chances of minimal symptoms.

Post by **tex** » Thu Jun 08, 2017 3:15 pm

A 30-day budesonide treatment is too short to help anyone. He must be expecting miracles. Good luck with his treatment program.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Thu Jun 08, 2017 5:21 pm

your journey is similar to others here, and they come to a stage like this one - do they follow the doctors/specialists orders, or do they embrace what a bunch of people on an internet forum are saying...

what you do next is up to you.
my advice in this situation is don't disregard or alienate medical professionals totally, moreso, look at the options available and do what you think will work best for you.
I encourage you to spend some time reading through the success stories area, and this information on medication area where there are numerous discussions about treatment with budenside to see what others have done, what worked, what didn't, how long it took so you can consider your options going forward

Information on medications area - lots of posts about budenside
http://perskyfarms.com/phpBB2/viewforum.php?f=5

Members success stories area
http://perskyfarms.com/phpBB2/viewforum.php?f=71