so happy to finally have a diganosis

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

kat123456
Posts: 21
Joined: Fri May 08, 2009 3:09 pm

so happy to finally have a diganosis

Post by kat123456 »

Hi,
First post on this site... I am so happy I was finally diagnosed this week and now we can treat and fix it all! I am a Celiac, and have been on a Gluten-Free diet since 2003, but some problems would NOT go away. AFter having a terrible past year (Epstein-Barr, chronic mouth sores - hundreds at a time, and now chronic diarrhea that won't stop), they finally diagnosed me with Lymphocitic Colitis after an emergency colonoscopy last week. I ended up in the ER a few days later from dehydration, but am feeling much better now that I am on Entocort and Pepto. I have also been on prednisone since September for other auto-immune issues. Additionally, I take singulair, vitamin D, fluticazone nasal spray for allergies, and diflucan to combat a raging yeast infection (thrush) that started with the dehydration.

So, my biggest question is this: Where do I find support for both GF diet and Colitis as well as my other food allergies!? I am thinking of going back to see the nutritionist at the Celiac Disease Center, since I haven't seen her in about 5 years, and basically, now I am completely malnourished. Some of my vitamin counts are very 'off', including my Vitamin D. I am just not absorbing it very well. (Currently taking 50,000 IU once a week.)

So, does anyone have thoughts about where to turn for help? I am familiar with the Paleo Diet, and used to follow it religiously when I was first diagnosed with Celiac. I have also used the Specific Carbohydrate Diet, but haven't stuck to either one more than a year or so. I just find it nearly impossible in today's fast-moving society to eat like that. Maybe I need more will-power!

I am also in a position of having gained 25 pounds from the constant prednisone use since September (though I have lost 8-9 in the past 2 weeks from the diarrhea!) so I really need to be careful about what I eat so that I don't gain even more. I was preparing for a triathlon when I got sick a year ago with Epstein-Barr, and it's all been downhill since then.

Thoughts or suggestions?

Thanks
Kat
RUBYREDDOG
Adélie Penguin
Adélie Penguin
Posts: 158
Joined: Tue Jun 10, 2008 4:45 pm
Location: Glendale, Ca.

Post by RUBYREDDOG »

Kat, Welcome to our site. WOW.... you have been through the wars haven't you. I think you are going to be impressed at the information and help you find at this site. I know I was....and still am.

I'm going to let Tex and some of the other knowledgable members offer their advice to you. Spend some time surfing through this site and you will notice that we are here to help both on a physical and on an emotional level. Ask lots of questions. You will get real world advice from people who also have this terrible disease. Good Luck!!!

Hotrod
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

Hi Kat!! Welcome to our board! :wave:

It sounds like you've had a very rough year.

I'm concerned that you are taking two different steriods at the same time. Most of us who have taken the steroid route use Entocort by itself because it has less serious side effects than Prednisone. Also, Pepto Bismo is normally not taken along with Entocort.

We have a few members who have both Celiac disease and Microscopic Colitis. We've found that once they successfully manage the Microscopic Colitis, they also are managing their Celiac disease. This board will be your best guide in learning to manage both.

You will find variety of treatment programs here. Some use diet alone, some use medication alone and some use a combination of both. We also have several members who follow the Paleo diet and have found it to be quite successful at managing MC.

I'm sure you will be reading a great deal here. There's a lot to learn and a broad range of experiences. This is a great group - you've come to the right place.

Gloria
You never know what you can do until you have to do it.
User avatar
tex
Site Admin
Site Admin
Posts: 35068
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Kat,

Welcome to our internet family. I'm sorry to hear that you have so many issues going on at the same time, but as you probably already know, autoimmune issues tend to lead to other autoimmune issues, unless they are adequately controlled.

As Gloria mentioned, once you have your LC symptoms under control, your celiac issues will automatically be controlled, (assuming that you faithfully follow the correct diet), and you may find that most of the other problems will fade away, also. The mouth sores are almost certainly linked with your LC, (that's a very common symptom among members, here), and there is a good chance that the EB is connected, also, though I'm not sure that those symptoms can be reversed, once the physical changes to the epithelial histology of the esophagus have already taken place. Malabsorption is a very common problem, among members here, until we get our symptoms under control.

You may have better luck than we have had, but most of us have found that it is virtually impossible to find a nutritionist/dietitian who is sufficiently knowledgeable about MC, to be trustworthy. Like most GI docs, most nutritionists do not believe that MC is connected with food allergies, when in fact, it is intimately, and profoundly connected.

As for what to do - the paleo diet works, usually with very little fine tuning. The SCD does not work, because it allows dairy products, and all but a few of us are casein intolerant, (casein is the primary protein in all dairy products). Also, about half of us are intolerant of soy. Therefore, if you want to eliminate your MC symptoms, a good first step would be to eliminate all sources of dairy and soy from your diet. Hopefully, you are already eliminating all traces of gluten from your diet.

I agree with Gloria, it is very questionable of your doctor to prescribe two corticosteroids at the same time. Based on our experience, Entocort, (budesonide), is the best med for MC, (the safest med that is actually effective). That makes the Prednisone redundant. Prednisone is not a very popular drug on this site, especially among those who have used it. It is no more effective than budesonide, (for MC), and carries a much higher risk of Draconian side effects.

Since a major part of MC reactions is frequently due to the Leaky Gut Syndrome, you may find that you will have to get rid of the Candida overgrowth before you will see much improvement in your MC symptoms, since a Candida overgrowth will virtually guarantee that LGS will be present. The Candida roots force their way through the "tight junctions" between the cells of the epithelia of the intestines, thus allowing partially digested peptides, and amino acid chains, to leak into the bloodstream, causing all sorts of peripheral symptoms, when those peptides settle out in various other organs of the body, where they cause additional inflammation.

True, careful attention to diet is not easy, in today's society, but we have to either make lifestyle changes in order to eliminate the symptoms of our diseases, or the diseases will continue to progress, and eventually force us to make those changes, anyway, after some of the damage to our body becomes permanent. Meds can help to smooth the way for a while, by reducing the inflammation, and masking the symptoms, but if you have gluten-sensitive enteropathy, drugs cannot completely stop the damage from accruing, in the long term. Only a change of diet can actually prevent the inflammation, (and the cellular damage), from occurring in the first place.

Everyone here works out their own treatment program, based on their needs, and their lifestyle. We are all different, but we learn from each other, what works, and what doesn't work. You can get your life back, if you are motivated to do so. It's not easy, to make the necessary changes, but it will pay dividends, for the rest of your life. Please feel free to ask any questions that come to mind, because most of us have been there, done that.

Again, welcome aboard,

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
starfire
Moderator
Moderator
Posts: 5198
Joined: Wed May 25, 2005 5:48 am
Location: Pennsylvania

Post by starfire »

Just want to say Welcome, Kat. Sure glad you found us and I hope this site be as helpful and supportive for you as I have found it to be. You sure deserve a break!!

:grin: Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
kat123456
Posts: 21
Joined: Fri May 08, 2009 3:09 pm

Post by kat123456 »

Thanks for the quick responses. I want to explain the use of the 2 steroids and see what you all think. I was put on very high dose prednisone when the mouth sores first occurred in September. (40mg, then 30, then 20, then 10). Every time I stopped the Prednisone, the sores came back, so they kept hitting me again with more prednisone. I ended up staying on the prednisone until January, when they had switched me to Colchicine. The colchicine wasn't helping to control the sores and I was exhausted from the EBV, so the rheumatologist put me back on 7.5mg of prednisone and now we have dropped to 5mg for the past several weeks. My stomach issues really flared on the lower dose of prednisone. (All the meantime, my gastroenterologist REFUSED to do another colonoscopy, since I had one 18 months ago that showed nothing other than the 6 polyps he removed.) I fired that GI doctor and got a second opinion, and he ended up doing the colonoscopy and endoscopy last Tuesday on an emergency basis since I was soooooo sick. Of course, as I mentioned in my previous post, I ended up in the ER for 9 hours last Friday night because of severe diarrhea and dehydration (fever, tachycardia, etc).

When the nurse called me Monday morning to say it was Lymphocitic Colitis, she said the doctor requested that I take Entocort 3mg 3 times a day, along with 2 capsules of Pepto, and use Immodium AD as needed. They said it was ok to stay on the prednisone 5 mg. I also called my rheumatologist and he said that because prednisone is systemic and entocort acts on the GI tract, it's ok to stay on both for now.

I have had diarrhea for 9 weeks now, and while the urgency is now gone on the Entocort (MOST of the time... but not always), it's still diarrhea after 5 days of the medicines.

I eat mostly paleo. I have avoided dairy for years because I don't feel well when I eat it, though I didn't test positive for any allergies to it on scratch or blood tests. I also avoid soy like the plague! I don't drink soda and I am off caffeine. I am basically subsisting right now on chicken breast, boiled carrots, steamed white rice (not paleo, I realize) and homemade chicken soup (chicken, carrots, celery for flavoring, but I don't eat it).

I am also allergic to egg whites, so I am trying hard to avoid eggs. (In fact, I have '52' food allergies according to my last round of tests, but I think it was leaky gut at that time, since it literally outlined what I had eaten most recently.)

Any further thoughts? I will read through the site more over the next few weeks and hope that all of the pain and diarrhea will calm down soon.

Kat
User avatar
tex
Site Admin
Site Admin
Posts: 35068
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Kat,

Thanks for the clarification. Your intolerances match a number of members here. Based on your current diet, you appear to be following a very good plan, and I would expect that you will see continual improvement of your symptoms, as the inflammation subsides. It does take a while for the intestines to heal from the damage that MC causes, but Entocort allows the suppression of symptoms much sooner, so that we don't have to suffer needlessly, while we're waiting for the intestines to heal sufficiently, until the diet can take over.

At only 5mg of Prednisone, it shouldn't pose any risk of a corticosteroid overdose, (that happened to one of our members, with very serious consequences).

One thing about food intolerances. This has nothing to do with allergies, so we have found the conventional skin tests, and blood tests, to be pretty much useless for determining food intolerances. The only tests which are consistently accurate for determining food intolerances, are the stool tests, offered by Enterolab, in Dallas, Texas. The reason for this is the fact that the gut is the site of the reactions, so it would make sense that the gut would be the place to look for antibodies to food intolerances. By the time enough antibodies show up in the blood, to trigger a positive serum test, a patient will already have fully-developed celiac disease, and extensive intestinal damage.

I believe that in a few days, you will probably be feeling much better. I sure hope so, anyway.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

Entocort doesn't always work immediately, though it does work faster when combined with dietary restrictions. I'm pretty impressed that you have already eat a restricted diet. I was on Entocort for 4 weeks before I saw any changes. You are already having less urgency and that's a big change. Hopefully as time passes, you'll begin to see more improvement.

I also am intolerant to eggs. I reacted within a few hours the last time I ate them. I completely avoid them, though I would love to eat them for breakfast.

I used to eat carrots in my homemade soup at least three days a week. I noticed that I had problems after eating the soup and also when I ate carrots with other meals, so I no longer eat them. I'm not sure how many others avoid carrots; I seem to have more food intolerances than most.

I agree with Tex that you may have to first get rid of your Candida overgrowth before you can effectively manage your other issues.

Gloria
You never know what you can do until you have to do it.
kat123456
Posts: 21
Joined: Fri May 08, 2009 3:09 pm

Post by kat123456 »

Frankly, I am surprised that all this happened, since I am on such a 'clean' diet in the first place. I NEVER eat gluten (unless it's a cross-contamination issue at a restaurant, which rarely happens, since I almost never eat out) and I rarely eat even gluten-free goodies, and for the most part only eat what I can hunt or gather, as I jokingly tell my friends. I belong to a local organic farm cooperative and get all of my veggies and some fruits from them from June til November, and freeze all the extras to eat the rest of the year. I only buy organic food.

Note that my doctors are also checking for parasites, since I have had them twice before (4 years ago and 20 years ago - something VERY rare) and they are suspecting something similar might be wreaking all of this havoc. I read somewhere that parasites can actually lead to LC, as well as auto-immune issues. This bout of diarrhea is acting just like my first bout with parasites and started VERY suddenly when I was at a restaurant on February 28th. I had ordered off their gluten-free menu and my friend and I were there a couple hours. I got HORRIBLY ill at the restaurant, with incredible urgency and with perhaps the worst diarrhea of my life. I felt like I was dying. It was awful. The diarrhea only stopped for one day when I had barium for a small bowel study and then stopped for 4 days when I was on antibiotics for a sinus infection. It also responded well to the cipro they gave me at the Emergency Room. Any thoughts on that?

Kat
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

Most of us find that we do very well while taking Cipro. Then once we're off it, the symptoms return. I don't think that we've figured out why.

Gloria
You never know what you can do until you have to do it.
kat123456
Posts: 21
Joined: Fri May 08, 2009 3:09 pm

Post by kat123456 »

Very interesting... I was on Levaquin the first time the Diarrhea stopped, which is very similar to Cipro. Then, I certainly felt better on the Cipro, too. The doctors were wondering if there was an underlying infection of some sort!?
User avatar
tex
Site Admin
Site Admin
Posts: 35068
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

It sure sounds as though whatever was in that meal you ate on that fateful day, did indeed trigger your LC, unfortunately. Of course, just about any form of enteritis can trigger MC, apparently, if we happen to be vulnerable, at the time.

Levofloxacin is another antibiotic in the fluoroquinolone class, (which also includes ciprofloxacin, of course). The interesting thing about Cipro, is that it seems to work for virtually everyone. No other med is as effective for so many people. Of course, as we have all noticed, a few days after the treatment is ended, the symptoms return. Unfortunately, it's not a viable treatment for MC, due to it's propensity for causing torn ligaments. In fact, the FDA has imposed the government's most urgent safety warning on the flouroquinolone antibiotics, in the form of a prominent "black box" warning of the risk of tendon rupture, which can cause long term disability, possibly permanent.

Incidentally, if any of the corticosteroids are taken concurrently with one of the flouroquinolones, the risk of tendon rupture is amplified.

And yes, this does suggest that a bacterium might be involved. In fact, some of us have suspected for years, that an as yet undiscovered bacterium might be responsible for MC, similar to the Mycobacterium avium subspecies paratuberculosis, (MAP), that causes Johne's disease in cattle. (You may have read about this). Some researchers suspect that an altered form of this bacterium may be responsible for Crohn's disease, for example, but so far no one has been able to make any connections, so we continue to think of IBDs as autoimmune diseases, until the real cause is found.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
manonash
Adélie Penguin
Adélie Penguin
Posts: 61
Joined: Mon Oct 20, 2008 2:45 pm
Location: Texas

Post by manonash »

Kat,

Welcome to the forum. I'm fairly new here too and the people here are very helpful. Glad you found someone who would do the biopsies and that you got an answer.

Tex,
That is really interesting about the mycobacterium. I went to do some reading about them, and those are some scary buggers! Have you found any studies possibly linking them to IBD? It sure would seem there is an infectious cause of LC if it responds so well to certain abx.

Shonda
User avatar
tex
Site Admin
Site Admin
Posts: 35068
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Shonda,

No, I haven't seen any possible links between bacteria such as those, and IBS, but then, I haven't done a thorough search of the literature in the last year or two. I'm not aware of any research programs dedicated to this concept either, but that doesn't mean that no one is studying this, of course.

Over the years, I've forgotten many of the details peculiar to MAP bacteria, but as I recall, they were very difficult to locate, originally, because of the way that they "hide" in cells. If any mutations of those bacteria exist, to cause IBS, MC, UC, Chron's, or whatever, there's no telling how they might be hidden, and who knows what type of stain, or some other trick, might be required to make them visible.

Look at how long it took to finally discover H. pylori - it wasn't discovered until 1982. And notice how long it took science to recognize the researchers who discovered it - they were awarded the Nobel prize in 2005, 23 years after the discovery. If the medical establishment were to be represented by an animal, it would have to be a sloth, or maybe a tortoise. :lol:

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Pat
Rockhopper Penguin
Rockhopper Penguin
Posts: 1068
Joined: Fri Nov 17, 2006 2:41 pm
Location: Texas

Post by Pat »

Kat,

Welcome! I think you have found the right support board! This is a very difficult disease to get under control and it looks like you are doing the right things. I recently took Nystatin and Diflucan for about 6 -7 weeks and they also had me on a yeast free diet - no grains, no sugar. Carrots, particularly cooked carrots, are high in sugar. I still have difficulty eating any vegetables or fruits. I tried to eat Paleo but when you can't tolerate veg or fruit one has to resort to rice, I think. I also eat Buckwheat cereal for breakfast. It at least gives you something different. Make sure your Vit D doesn't have soy in it. Most do. Mine is in medium chain triglyceride oil which is absorbed in the stomach not the intestine, at least that is what my dietician told me. I just recently found out that my fish oil has soy in it; I called the company and they confirmed it, so I feel like I am starting all over.

Again, welcome to The Potty People!

Pat
Post Reply

Return to “Main Message Board”