Mornin'! New to Potty People but not new to the potty;)

irisheyes13 · Post by **irisheyes13** » Mon Jan 31, 2011 10:56 am

Hi Everyone,

I've been scoping out all the postings for the past several days and thought I'd jump on and say hi and introduce myself as well as thank everyone for all of the helpful information... so thank you!

My name is Kelly and I was formally diagnosed with Collagenous Colitis in 2004 via colonoscopy. I had lived with the diagnosis of ibs for years prior to that. Once the diagnosis was made I went through months of trials on the myriad of drugs from pepto bismol, Levsin, Lomotil, Asacol, Entocort, Lotrenex, Prednisone and 6-MP. The only success was Entocort which only gave me partial relief of symptoms and Prednisone which gave me complete relief of all symptoms and I felt wonderful. Obviously it wasn't possible to stay on this long term due to the side effects. I am extremely sensitive to most any medications and had so many side effects with all these trials that it was becoming a bigger problem trying to resolve the symptoms than the symptoms themselves. I went to another GI who tried probiotics along with relaxation tapes and other unsuccessful modalities. Due to my frustration with the how sensitive I am to medications and the high demand of my job I decided they didn't really know what they were talking about and chose to "ignore" the problem thinking that it would resolve itself. I thought I could live with 10-20 trips to the loo a day never considering the damage this may be causing.

I supposedly tested neg. for celiac via endoscopy with the pathology report stating: "duodenal biopsy-benign. No evidence of atrophy or atypia. Terminal ileum biopsy-benign small bowel mucosa with multiple lymphoid aggregates with crushing artifact. No evidence of active inflammation or atypia". I don't really understand the lingo but I found it odd that there was no mention of the villi at all. Although the endoscopy was performed by my GI the insurance mandated which lab the pathology samples were sent to. This didn't sit well with my GI and we were relying on an "unknown" pathologist with LabCorp for the results.

During the period that I was being treated I found a helpful forum with some really wonderful ladies which was microscopiccolitis.org. I decided to do a search to find them again recently since my symptoms are now debilitating and couldn't find it but did find you all and I'm so glad I did...I thought I remembered "potty people" slogan for them too. Is it one and the same and just looks a lot different?

I don't remember much mentioned about controlling MC via diet on the forum back in 2004. There was mention of it and I remember some folks having some success with their symptoms but nothing consistent. Three years ago my ob/gyn suggested I go on a total elimination diet to see if there may be some sort of food allergy causing the problems. I did this for 6 weeks eating nothing but "whole" foods including organic meats, vegetables and fruits only- no gluten, no grains, no dairy and no sugar...it was very painful to stick to it but I did. Within 2 weeks I was feeling like a new person. No D, cramping or bloating! I slowly started to introduce new foods and had problems... for about 6 months and then everything started up again. What amazes me is that neither GI or my internist has ever mentioned the possibility of a gluten sensitivity or intolerance in all the years I have been going to them.

Since this time I have now developed debilitating fibromyalgia, brain fog and am hypeRthyroid with small goiter. I've been told it is Grave's disease although have not had a biopsy. My endo then preceeded to overmedicate me making my hypothyroid. I have been off all meds for one year and am now hyperthyroid again but am afraid to go back to the same dr.

Sorry for the long introduction! I have dedicated myself to getting better in 2011 without the help if mainstream healthcare and went gluten and dairy free effective 3 weeks ago. I also ordered the full sha-bang of testing at Enterolab this morning... I'm hoping for some definitive answers soon so that I can be a better mom and wife again.

If anyone has any insight to anything I've said, I'm open to any help or suggestions.

Thanks for listening to my ramblings!

harma · Post by **harma** » Mon Jan 31, 2011 11:21 am

Hello Kelly a warm

from Holland. I don't think your story sounds rambling, it's all quite clear. Must be hard having this disease for so long and not be able to achieve remission. If you want to try to control your disease with diet, you have come to the right place. I wish you all the best for 2011 and hope your new approach will be a big success.

harma

Post by **tex** » Mon Jan 31, 2011 11:23 am

Hi Kelly,

Welcome aboard. This board was formed in 2005, from the core of the membership of the old board, after the hired administrator of the old board decided to stage a mutiny, and take over control of the board from the owner, (Sally), and the board began to fall apart. Sally also became a member here. Sadly, she passed away a little over a year ago, but her legacy, and her vision, lives on in this board. One of the founding members here, created the Potty People logo, years ago.

This board is very pro-diet, for controlling our symptoms. Though a few use meds, and many use a combination of diet and meds, many of us use diet alone to control our symptoms, and we have been in remission for many years. As one of our members, (Gabes), often says, "there's no right way, or wrong way, there's only your way".

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

Tex (Wayne) - Self-Diagnosed, on the old board.

irisheyes13 · Post by **irisheyes13** » Mon Jan 31, 2011 11:42 am

Wow, that was quick! Thanks Harma and Tex.

Your explanation makes me feel better because I thought some of the names here sounded familiar. I definitely remember Sally's name now that you have mentioned it. I'm sorry it happened but it seems like the it is "new and improved".

I had considered Enterolab back in 2005 but wasn't convinced that the information received was accurate at the time and although they may still not be recognized by many physicians due to lack of peer reviews, it appears they/Dr. Fine are being recognized by thousands who are suffering from MC and CD and that is all that really matters. I am anxious for the material to arrive to see what it shows and am hoping for some insight from everyone here who is so experienced at understanding the results.

I did search regarding reimbursement but didn't find anything definitive here. I also forgot to ask about this when I spoke with Enterolab as well but has anyone had success in getting reimbursement? I'm sure it depends on the different insurance companies but am hoping that it is worth a try.

Celie · Post by **Celie** » Mon Jan 31, 2011 12:39 pm

Hi Kelly,
Welcome to the board. My insurance would pay for it at out of network rates if my doc ordered them. For me that meant no coverage because my out of network coverage has such a high deductible.

Celie

Post by **tex** » Mon Jan 31, 2011 1:04 pm

Kelly,

Yes, it depends on your insurance company, but as Celie pointed out, if your doc orders the tests, the odds improve that they might pay for the tests. If you E-mail or phone Enterolab, they can give you the billing codes for the various tests, so that you can ask your insurance company whether they will pay for them.

If you feel that you might have many food sensitivities, you might be interested in MRT testing, but again, some insurance companies will pay for the testing, and some will not. We have found that many/most people with double DQ genes, (DQ1,1, DQ2,2, etc.), tend to have many food sensitivities, and the MRT test results can make sorting out some of the details much more orderly, (and faster).

Tex

MaggieRedwings · Post by **MaggieRedwings** » Mon Jan 31, 2011 1:22 pm

HI & Welcome Kelly.

You have landed on the right board and like Tex I manage through diet alone. Sometimes not the easiest route but without a doubt for me the successful route.

Stick around and ask away.

Maggie

irisheyes13 · Post by **irisheyes13** » Mon Jan 31, 2011 2:18 pm

It's good to know that I have a shot at possibly recouping some of the costs. I too have a high deductable but if the insurance company will allow the claim it will at least help toward meeting it. There is no chance of any of my physicians signing off on this test. I've come to realize that if it isn't their idea, they won't order it. I'm just glad you don't need a physician to order the testing through Enterolab! I will most definitely be calling them back to get the billing codes... I meant to do it when I was on with them this morning but didn't have it written down. I can't seem to hold a thought any more.

Tex, I missed what you had said in your earlier post regarding Sally passing on until I went back and re-read it. From everything I remembered about her she was such a giving and intelligent soul and very witty too. I'm so sorry to hear about her passing but everyone is doing an incredible job continuing her vision here.

I've read quite a bit recently about leaky gut syndrome and feel like I would be a likely candidate for this since I have been dealing with MC unchecked for so long. In addition to going gluten and dairy free is there anything else I should be considering regarding testing, supplements, medications or more restrictions? Currently I take a multi vitamin, omega 3 fish oil, Citracal with Vit D, Vit D prescription, Biotin and acidolphilus. I also take a tablespoon of coconut oil twice a day. I need to determine if any of these have gluten in them.

Is the MRT testing better than Enterolabs or an additional test that should be considered? I have no clue if I have any food sensitivities. There seems to be no rhyme or reason to when or why I'm doubled over with cramps, gas and the big D.

I'm really hoping to start feeling better with diet alone but if I need to consider medications again, I will.

Again, thank you all for your warm welcome and suggestions.

TooManyHats · Post by **TooManyHats** » Mon Jan 31, 2011 2:43 pm

Welcome aboard, Kelly. You've already gotten some very sound advise. Have you considered eliminating soy from your diet? This can be one of the tougher ones, but well worth the effort. Take a look at all your vitamins to check for soy. It causes me terrible stomach cramps, gas, and D. I manage with diet alone as a result of the wonderful support from people here. Again, welcome!

Polly · Post by **Polly** » Mon Jan 31, 2011 4:22 pm

Hi Kelly and

You already have lots of good advice - I'll just add a thought or two. Please check all of your vitamins and supplements to make sure, at a minimum, they contain no gluten, dairy, or soy. Also, if you want to get testing, I would start with enterolab's full panel of food tests. If you find that you react to most of them (gluten, dairy, soy, egg, yeast, etc.) you might then want to consider the MRT. But quite a few find they have only one or two intolerances, usually gluten alone or gluten and soy. So you may not need the MRT.

Hugs,

Polly

mbeezie · Post by **mbeezie** » Mon Jan 31, 2011 5:15 pm

Hi Kelly,

Welcome! Can't really add much to what others have said except to encourage you to look carefully at diet for some relief. It's not always easy to make big diet changes, but the health benefits are worth it. I agree with Polly - start with Enterolab and if that doesn't help enough then following up with MRT could be beneficial. Enterolab can tell you your genetic profile if you are interested.

Mary Beth

Kari · Post by **Kari** » Mon Jan 31, 2011 6:27 pm

Hi Kelly and welcome to the PP family. Sorry you had to come back again - this is truly a frustrating disease. Sounds like you're doing all the right things, and I will keep my fingers crossed for you that you will find what works for you. The collective knowledge here is an amazing resource for all of us, and knowing that we're not alone dealing with MC is worth its weight in gold. Many of us have experienced, as have you, that GI's are pretty clueless about how to properly treat this disease.

You have already received great advice here, but I wanted to mention that I was hyperthyroid with graves about 25 years ago. I chose to do the radio iodine treatment, and it worked great for me. I did flip to hypothyroid after a couple of years, and have been on 88 mcg synthroid ever since. I have never been bothered with any problems from it.

I also spent many years with MC, trying various methods of healing, to no avail. Only when I discovered the diet connection by doing research on the internet, and dropped gluten, did I start to see lasting improvements. I have done both the enterolab and MRT tests, and they have both helped me ferret out my multiple food intolerances. I agree with Polly and Mary Beth that doing the enterolab test as a start makes sense.

I wish you all the best on your road to recovery, and look forward to reading about your progress as time goes by. It takes enterolab about 3 weeks to get back to you with the results after they receive your sample, but you've already dropped gluten and dairy, so hopefull you've already started to feel better.

Love,
Kari

Post by **tex** » Mon Jan 31, 2011 7:06 pm

Kelly,

One thought - the Enterolab stool test for gluten sensitivity is so sensitive that it can reliably detect antibodies up to a full year after starting the GF diet, because gluten antibodies are so persistent, and have such a long half-life. That's not true for the other food sensitivity tests, however, (such as dairy, soy, eggs, etc.), and after those foods have been removed from the diet for roughly a month or so, the corresponding tests might no longer be able to reliably detect antibodies. IOW, if you remove dairy and soy from your diet, and you want to test for sensitivity to them, be sure to take a sample soon enough, so that you will be able to get a good, reliable test.

Also, Dr. Fine recommends temporarily discontinuing the use of fish oil supplements, prior to taking a sample, if you want to have a fecal fat score test done, (to check for the presence of intestinal damage), because that can possibly lead to a false positive test result.

Tex

explosive · Post by **explosive** » Mon Jan 31, 2011 7:19 pm

Hi and welcome to the board! I was diagnosed last year but went about 15 years without a diagnosis so I know where you are coming from in that way. I have started my second round of Entocort now but am also restricting my diet. I am in the wait and see mode.

Again welcome; everyone here is very helpful.

Sharon

Martha · Post by **Martha** » Mon Jan 31, 2011 7:23 pm

Hi, Kelly, and welcome.

I got the codes from Enterolab and called my insurance company to ask if they paid for those tests. They said they were "routinely covered," which they explained to mean usually but not always covered, and that if they were covered they would be at the out of network rate.

I went ahead and ordered the food sensitivity tests but not the gene tests. I knew I'd have to pay for them myself because I hadn't met any of my quite high deductible yet. But I was hopeful, so I sent the bill in to the insurance company to see if they would apply it to my deductible. I got back a letter asking what doctor had ordered these tests. Well, since no doctor ordered them, I am not hopeful that insurance will apply it to my deductible, but I plan to explain the situation. Since I didn't really expect them to cover the Enterolab costs, I'm not too disappointed, but I had a few weeks of wishful thinking.

I used Entocort for 3 months, but when I went off it, the D came back. I am now controlling it with diet. I've been eating coconut since July, been gluten-free since October, and dairy and soy free since January 1. In all honesty, I'm not completely soy free, because I am still using some vitamins that have soy oil, but since I don't have D now, I feel like I am tolerating that. If I have a flare, I'll change my vitamins.

Again, welcome to the PP.