Checking in:

[mom2zonabby]

Hey there - it's me again. Been a while since I've checked in. After my last endo and colonoscopy and CT scan, I haven't really felt in the mood to write much. Basically, same thing came back as each time before. I have "possible" MC and "possible" Celiac. I'm apparently fairly unique. There's no evidence of active inflammation or loss of goblet cells or autoimmune enteropathy, whatever that means. My small bowel has bacterial overgrowth, and while the pathologists have recommended genetic testing, as they say the findings are most consistent with an immunodeficiency disorder. However, my GI still wants to treat me with the Entocort, which i've been on before without success. In fact, I'm into week 3 with this med, and have had 2 incidents where I didn't make it to the restroom, and one where it was close - of course, all while out in public - shopping then at work. It's so frustrating. I don't want to have to go on to another doctor but really, when will one take this seriously? How would they feel to be a 42 year young woman unable to control their bowels??? It's so debilitating! I'm just at a loss. I have a girls weekend coming up in a week, and then a trip to vegas in October for a bachelorette party - all i can think of is that it's best not to eat anything because only then do i have a fighting chance. My CT scan was to test the pain I get in my stomach, similar to when I had my gallbladder. Other than fibroids in my uterus, that came back normal. I hate that word, normal.....something is indeed wrong! I also found my thyroid is slow again, so I'm taking synthroid. I did some searching and thought maybe that had a connection to my digestive issues - gi says not likely. then what?? I see her on the 22nd to see what's next. part of me wants to ask for all of my labs and test slides from my procedures and hunt for yet another gi, but part of me doesn't want to have to explain this all to another doctor who will nod their head, and then still not take this seriously. What's next? I just don't know.

[mom2zonabby]

Hi - I wonder, has anyone gone on a type of short term disability? I'm quite capable of working, but GOING into the office terrifies me. I currently work from home 2 days a week, and now wonder if i should request 5 days a week until I get this better under control. My GI is suggesting genealogy testing in Washington DC or Mayo Clinic in Rochester.

[tex]

Hi,

Some members have chosen to go on disability. MC falls under the Americans with Disabilities Act, as amended.

But your GI doc is wrong — if you have diarrhea, you have inflammation. We are 7 times as likely as someone in the general population to have thyroid problems.

I'm wondering if/when you made any diet changes and if so, how meticulous you are with your diet.

Tex

[mom2zonabby]

honestly, i have not been very good with diet. She swore other than going gf it wasn't necessary. The thing is, she can't say for sure it's Celiac or MC. That I'm a "unique" case....that other than gluten free, diet would do nothing. Now I realize this group disagrees, and I'm all on board for altering. I was just unsure since they can't say for sure it's even either of these things. I have no villi blunting either. Both pathologists are leaning towards immune dysregulation disorders. I just keep getting conflicting information, it's hard to know what's right. and another thing, she has no bedside manner whatsoever! I shouldn't feel like i'm bothering her, but I sure do.

[tex]

and another thing, she has no bedside manner whatsoever! I shouldn't feel like i'm bothering her, but I sure do

I certainly see your problem, and I sympathize with you. A lot of us face a similar situation. Our docs know so little about the disease that they hate to see us coming because they don't really know what to tell us. The sooner they can "get rid" of us, the better they feel.

Without seeing your pathology reports (the endoscopy reports) I'm just guessing, but the diagnostic criteria for MC and (celiac disease) are so specific that I don't see how a pathologist could come up with a "maybe" it's "this or that", or maybe it isn't. Paint me a skeptic. Most of us are unique cases — we're all different. That's just the nature of the disease. And it's the reason why most physicians don't understand it or have the slightest idea how to treat it. They're used to one-size-fits-all diseases — diseases that are easy to treat.

A simple DNA test will tell you whether or not you have celiac disease. If you have either an HLA-DQ2 or an HLA-DQ8 gene, that will confirm celiac disease if you have any symptoms. If you do not have either an HLA-DQ2 or HLA-DQ8 gene then it's impossible for you to be a celiac. However, it's still possible for you to be sensitive to gluten.

Rather than (probably) wasting your time with all the expensive and invasive (and risky) medical tests, you can resolve the problem yourself by strictly (100 %) following an elimination diet for a few weeks or so to see if your clinical symptoms begin to improve. If they do, you know you're on the right track. If they don't improve even a little, then you may need the tests.

At least that's what I would do if I were in your situation. Wait a minute — I was in that same situation 18 years ago, except that they told me there was nothing wrong with me (despite the fact that I was as sick as a dog), and that's what I did (the elimination diet).

Tex

[mom2zonabby]

UGH!!!! I want to fire my doctor! She's stopped replying to me, understandably. I asked for a doctor's note supporting me working remotely while we get this under control. Her nurse says:

Im sorry Marisol, but Dr Rao does not feel your symptoms warrant working full-time from home. In fact, our dept. does not support that for a patient unless their condition is untreatable. The only abnormality she has found with objective testing is the lymphocytic colitis which is very treatable. If you are having mulitiple incidents at work on a daily basis, then we need to work on changing your treatment so you can have an excellent quality of life. You can discuss that at next appointment.

Really? If I'm having multiple incidents at work on a daily basis, then we need to work on changing the treatment? multiple, daily incidents? She's the one that told me my pathology reports con't completely support LC! I feel so dismissed!

[Erica P-G]

Hi Marisol,

If the note from your Dr with the sentence in it The only abnormality she has found with objective testing is the lymphocytic colitis which is very treatable. then you do indeed have Lymphocytic Colitis just like me and a whole lot of other people on this site. The only difference is you will respond differently to the diet changes based on what your 'safe' foods might be.

What I find hard to believe is if your Dr wrote that note then she thinks "it is treatable"!! Why doesn't she know how to help you.....I feel that is why you are here

I hope you will take to heart the many tried and true healing methods from this site as you will get to feeling so much better with or without knowing if you are or are not celiac and until you are comfortable getting DNA testing there is nothing in the elimination diet plan that can hurt to try.

Believe me I was heart broken at age 40 when my body started to exhibit signs of this nasty MC/LC but I didn't know what it was at the time, I just knew my body wasn't behaving right and it was concerning. Fast forward 6 years and a colonoscopy and I had a diagnosis of LC...I still didn't do anything about it until I found this site, it is here I had a mental and physical breakdown of disbelief that I had to make such drastic changes in order to even think about starting to feel 'normal' one day. Long story short....I pushed through all the uncomforting feelings and ailments, stayed true to being gluten, dairy, soy and egg free and now at 3 years into healing I'm smiling again...what I have been doing is actually working. Am I perfect...no...but do I feel better...Oh Ya!

I wish you well on this journey...please always say something so we can lift you back up

[mom2zonabby]

Thank you both for your kind words today - your posts are encouraging, and it's nice to know there's somewhere I can go and vent where you understand me. I was surprised at her comment about my diagnosis, since she's the one that said "possible" and that i'm a unique case. In fact, we were looking at the possibility of SIBO. Has anyone else shown signs of bacterial overgrowth in the small bowel along with lc?

I guess at this point, I need to stop counting on the doctors and use the resources here. I had hoped I could do both, but she really showed me just how naive the medical community is. Luckily my company is all about work life balance, and supports me working remotely while I get myself healthy. I may not need her letter of support in the end, but for her to basically tell me to deal with it is just more than I can take.

Thanks all.

[brandy]

Ugg, I'm so sorry you are going through with this.

Best start eliminate all gluten, all dairy, and all fiber (raw foods, nuts,) If you have any veggies at all they must be very overcooked and sticking to overcooked squash, carrots, etc is generally safe. Minimize veggies early on. Also, eat 100% unprocessed.

Gabes has a good starting food regimen that I can never find. Perhaps someone can find the link.

It is not uncommon for folks on the board to be on GI doc #4, or #5.

PS. It does get better. I am in a solid remission. I went to Manhattan several weeks ago and am heading to Montana and San Francisco tomorrow with no concerns.

Have you tried Uceris (similar to entocort but works a bit differently) or cholestyramine? They work for folks. Diet is very, very key.

[Erica P-G]

Hang in there Marisol,

A couple notes of interest....Yes Sibo is real with MC/LC so yes an overgrowth can occur, I am on a product S. Boulardii that I feel is working in tandem with a nano-silver product that rids the body slowly of Candida Yeast and bacterial overgrowth. I am feeling tons better by being on this protocol right now, I may have needed it months ago, but just now came upon it in my researching.

Due to your gall bladder being out do you notice any yellowish stain bowel movements that could be whats called BAM (bile acid malabsorption) too much bile enzyme making its way thru your intestine and causing those panic bathroom trips....I had that for a while (and I have my gall bladder) I took Cholestyramine (real sugar kind) and it did indeed help me to continue to heal my intestines....after 7-8 months I was able to stop using it whereas in your situation perhaps it may be something that you could use on an as needed basis for life??? Once you get the bacterial overgrowth under control other things seem to start falling into place better. At least that is my take on it as of lately doing the protocol I have been on.

Start somewhere preferable diet with VitD and Magnesium first and mentally get that under your belt Lots of good advice here at the forum....

[mom2zonabby]

Thanks, i'll need to search for that, I thought I saw it pinned somewhere. Tex I believe has sent to me before also.

I'm so glad for you! I wish for the day I can go somewhere without being absolutely terrified. What a horrible disease!

Anyone think I should move forward on my own in search of an autoimmune connection? I don't know much about my father side, other than he has ulcerative colitis and figure it might be good to help narrow it down.

Also, any clue where I get a dna test from? I did test positive for one of the genes for celiac, but negative on the serology's.

[mom2zonabby]

Thanks Erica. Drives me batty that my gi doesn't think they can go hand in hand. What good is she really? is this candida yeast something I need a script for?

As far as bm colors - they're all over the board, from yellow to black. I'm on the vitamin d now, as well as synthroid for my slow thyroid, and a multivitamin that contains magnesium.

I'll start with diet and continue the entocort and pray we start to get somewhere.

Hang in there Marisol,

A couple notes of interest....Yes Sibo is real with MC/LC so yes an overgrowth can occur, I am on a product S. Boulardii that I feel is working in tandem with a nano-silver product that rids the body slowly of Candida Yeast and bacterial overgrowth. I am feeling tons better by being on this protocol right now, I may have needed it months ago, but just now came upon it in my researching.

Due to your gall bladder being out do you notice any yellowish stain bowel movements that could be whats called BAM (bile acid malabsorption) too much bile enzyme making its way thru your intestine and causing those panic bathroom trips....I had that for a while (and I have my gall bladder) I took Cholestyramine (real sugar kind) and it did indeed help me to continue to heal my intestines....after 7-8 months I was able to stop using it whereas in your situation perhaps it may be something that you could use on an as needed basis for life??? Once you get the bacterial overgrowth under control other things seem to start falling into place better. At least that is my take on it as of lately doing the protocol I have been on.

Start somewhere preferable diet with VitD and Magnesium first and mentally get that under your belt Lots of good advice here at the forum....

[Erica P-G]

I personally would do 23andMe.com they are having a mothers day sale right now the entire health DNA for $140 as compared to $200 that is what I used and I enjoyed the information.

Otherwise you can use Ancestry.com and I think they are having a sale as well but you only get the RAW data and no additional information.

Both of these sites you will need to upload the RAW data into Promethease.com for a small fee which is where I learned about all my Gene stuff.

Genetic Genie is where one will learn about their methylation issues if any, that is a great help.

But it all comes down to getting your DNA done first so I'd pick one from above, we can help you further your need to finding other information once you have your RAW data downloaded to your computer.

[Erica P-G]

The multi vitamin most likely will not have the correct magnesium nor the dose needed to address your healing that will be need in the months to come. Also a multi vitamin is sketchy at this time in the healing process as to many ingredients can upset the apple cart and you may not know what you might be reacting to. Entocort can help slow things down, it may even mask symptoms to foods that are actually working against you, but you will not know this until you start to wean off the entocort so it is really important to get to know your safe foods (a way to do this would be the Enterolab testing).

You will need to choose an Elemental Magnesium such as Drs Best or KAL Glycinate Magnesium because you will need a pure magnesium in order for it to work with your VitD3. This will start an important healing in the intestines that is needed as a basic foundation to moving forward.

The Cholestyramine you will need a Rx for, the S. boulardii no you do not, I get it online. I am trying the Biotics brand and it is nice and safe so far.

You can do this

[mom2zonabby]

Thank you so much. i am taking notes and including all of this in my health journal! It's a lot to remember, but wow, you all really are so helpful. Thanks!