Hi everyone, I'm new!

[Mackenzie]

Hi everyone!
First off I want to thank everyone for being on this site. This was the greatest find, so glad I started "googling" MC. I do have a few questions if anyone has any helpful info for me.
For starters I will give you some background on me. I'm 26 years old, I have a hiatal hernia that was diagnosed at 17. And I was just diagnosed with MC 2 weeks ago. It seems it is rare since I am only 26 and I'm a very active female (that's what I've been told anyway). Rare to have both problems. Anyway, I've always had what I would consider bad D. I thought it was due to being on a Proton Pump Inhibitor for so long but I decided to go to a new GI anyway to ask some questions. My old GI always told me it was IBS and it was normal. So imagine my surprise when finally a doctor told me- no this is not normal and we should find out the problem. I went home that night and cried because I was so happy that he didn't blow it off as "just IBS". Because for as long as I can remember I've mapped bathrooms wherever I go and many times I would avoid things because of this. So it was nice to hear that maybe it could be something else.
Since that initial appointment I have had an Upper Endoscopy to check on the hernia and rule out Celiac (which the doctor was fairly certain I had). So I've had the blood test and biopsy for Celiac, both negative. I've had a gallbladder ultrasound- normal. And most recently a colonoscopy which the biopsy obviously determined I have MC. Again I cried because there was a name- I'm a bit of a crier! And next week I am going for something called a Gastric Emptying Study. Right now I am taking cholestyramine twice a day. That is because I had asked the Dr about it after watching Mystery Diagnosis- anyway he humored me and said I could try it. This was before the colonoscopy. And after the MC was discovered he said I should stay on that for a couple weeks to see how I respond, since it can be a treatment for MC also. I would say it is helping a bit, I've noticed I have had far less problems since starting it. But I also don't know what "normal" is since I've always had problems with eating and D. So for me any improvement feels amazing!
Geez, I guess I have a lot to say - it's just so nice to write all this out. But before I get carried away let me ask my questions:

As far as Celiac and gluten sensitivity is concerned: Since I had been tested two ways both showing no Celiac is it still possible to have a gluten sensitivity? I ask this because I always eat bread because it seems to be one of the few things that doesn't upset my stomach- but I read on this site that it can take up to 16 hours to have a reaction. My normal reaction and "bathroom issues" happen within 20 minutes of eating usually. If I don't eat, no problems. So I'm the person at the party who doesn't eat anything, or the girl who doesn't like going out to dinner as a date. I prefer to not eat when I do anything important because I'm less likely to be sick.
My next question is what kind of OTC medications do I need to avoid? I heard Motrin is bad, which is usually what I take for headache ect. What is safe?
And my most important question... Does this really get better? I know that is silly, but I can't imagine my life without this problem and I don't want to think it will go away if it won't.

Anyway, thank you for reading all of that. I'm very thankful to have found a place where other people feel like me. Most people in my life have no idea I have any problems, I've always been pretty good at hiding it. I guess I always just looked at it as this is how I am, so I had to deal with it. I'm hoping someday I won't have to! I would love any information or help you can give me. Thanks again!

[Courtney]

, Mackenzie!

I'm glad to have you around as another young person on the board, but sorry you had a need for us. Perhaps you and I can compare notes, as people our age with MC seem to be something of a rarity. (My guess is it's not rare, but most of us are brushed off as having IBS--I sure was, for years. Good for you for being persistent! It makes me so mad that every book I've ever read on IBS gives clear warnings not to accept that diagnosis unless everything else has been checked out.)
I'm not sure why being "very active" would make this rare in your case. (Probably more doctor speak.)
I'm also 26, fairly active, and started getting sick with hypoglycemia, etc, when I was 17, although the D didn't show up until I was 21. I can now connect a lot of my symptoms to MC.

I'll try to answer your questions the best I can. Tex, our leader, will be along shortly I'm sure to fill in any gaps.

Yes, you absolutely can have gluten sensitivity and not have celiac. If you have MC, you almost certainly have gluten sensitivity/intolerance.

NSAIDS irritate the intestinal tract in people with MC, and I think overuse can actually trigger it. As far as I know, Tylenol is safe.

Most people are able to control MC through diet, meds, or a combination of the two. While your MC may go into remission, you will always have it, in the sense that if you stop the diet, meds, or whatever, your symptoms will come back.

We are so glad to have you! MC can be terribly isolating, and it's so nice to know that there are people here who care and who want to hear your gripes, tears, laughter, and sucesses. (And who know what it's like to spend several hours cleaning the bathroom! )



Courtney

[JLH]

Mackenzie, you've come to the right place for support and information.

I am treating my MC(LC) with diet alone which I learned about from this site. Read as much as you can on this site and www.enterolab.com It will most likely be overwhelming but ask any questions here. Tex knows more than the GI docs!

We are having a chat this evening. Please join us if you are able.

[tex]

Hi Mackenzie,

And welcome to our internet family. We consider ourselves a family, because no one truly understands how debilitating this disease can be, unless they actually have it. I'm sorry that you've been having to deal with this for so many years, simply because your doctors didn't have a clue what was going on.

As far as Celiac and gluten sensitivity is concerned: Since I had been tested two ways both showing no Celiac is it still possible to have a gluten sensitivity?

Yes, as Courtney has correctly pointed out, it's possible that you may be gluten-sensitive, because a very high percentage of us are. The classic celiac blood tests are notorious for false negative results, and they are pretty much useless for the type of gluten sensitivity that we have. Almost all of us test negative with those tests, except for those of us who are actually celiacs, also. That's good that the upper endoscopy showed no damage to the villi of your small intestine - that proves that at this point, at least, you do not have fully-developed celiac disease. FWIW, I never could detect a prompt response to eating gluten, either, the way that most MCers can, but I am extremely gluten sensitive, all the same. Like you, a lot of us don't eat anything when we attend parties, or other get-togethers.

The only reliable way to detect the type of gluten sensitivity that patients with MC develop, is with a stool test offered by Enterolab, in Dallas, TX. Their tests are several orders of magnitude more sensitive than the blood tests, and virtually 100% reliable.

My next question is what kind of OTC medications do I need to avoid? I heard Motrin is bad, which is usually what I take for headache ect. What is safe?

There's a chance that the proton pump inhibitor you were/are taking might have caused your MC, because certain PPIs have been shown to cause MC. I agree with Courtney that the most common medical trigger for MC is probably NSAIDS. IOW, avoid all Non-Steroidal Anti-Inflammatory Drugs. The only OTC painkiller that is not in that group, (again, as Courtney pointed out), is acetaminophen, (Tylenol). Boswellia, (an old Ayurvedic natural remedy), seems to work, also, but we are still investigating that. Some SSRI's also have been shown to cause MC, and a few other meds have been implicated. NSAIDs, are the worst, however. Also, if your doctor ever prescribes an antibiotic for you, and selects Augmentin, (amoxicillin), please try to talk him or her into picking an alternate antibiotic, because amoxicillin is notorious for causing pseudomembranous colitis, (associated with a C. diff infection). Many of our members have suffered with an unnecessary C. diff infection, simply because their doctor either didn't know any better, or just ignored the risk. Because of doctors overprescribing, and prescribing the wrong antibiotics, many of the common strains of C. diff are showing signs of "Super Germ" status, IOW, they are antibiotic resistant.

And my most important question... Does this really get better? I know that is silly, but I can't imagine my life without this problem and I don't want to think it will go away if it won't.

You betcha it gets better. The GI docs are a little slow to catch on to the correct ways to treat MC, but we've had very good success by using the techniques that Courtney has already outlined. Everyone picks a treatment program that fits their lifestyle, and then fine tunes it. Yes, you certainly can get your life back, if you're willing to do what is necessary to accomplish that goal. You've been accruing intestinal damage for so many years that it will probably take a while for your gut to heal, but it will heal, if you give it a chance, and at your young age, you should be able to pretty much completely recover.

Incidentally, the misconception that most doctors have about this being a rare disease is simply a self-perpetuating myth that the doctors themselves promote. They consider MC to be a rare disease, so until very recently, they almost never tested for it. If you don't test for it, with biopsy samples from the colon, you will never find it. Since only older people ever had biopsies, (due to cancer screenging, etc.), doctors almost never found MC in younger patients, so they considered it rare in younger people. Well Duh! If they look for it, they will find that it's really not rare, after all. We have cases of MC in patients as young as two years of age, among the membership. You may see some of the discussions about them, if you search the archives here.

Also, be aware that the crying response seems to be connected with MC. Most of us cry much more easily, than we did before the symptoms began - that's a bit of trivia that I don't believe you will find anywhere else. Depression also tends to go hand-in-hand with MC. If this disease doesn't depress you, chances are, nothing will.

Again, welcome to the board. Please feel free to ask anything, and I wish you the best of luck, on your path back to health.

Tex

[barbaranoela]

and greetings to U Mackenzie----mind if I call U Mack++

anywho----welcome to the family----and yes --we are very fortunate to have grouped together and helped each other------thru happy---and unhappy times--

Mack==almost appears that some of us have been to the same GI---saying IBS???? OK--so Xplain what IBS covers???? My first GI was like DUH!!! I stayed with DUH--misdiagnosed for many years--then I changed GI's and wallah---diagnosed with MCC--
MY GP terms this a DISEASE---and once I said--*I have a disease??? what??? answer* COLITIS*
Thats how ignorant I was---thru this room I have been educated on many things--

I also have a hernia--mine being a *sliding* hernia---no problem with that--
Cholestyramine did nothing for me---
Allergies to the *bismuth* in PEPTO--

By the time I changed over to 2nd GI--I was in very bad shape---so I had to be treated with the dreaded PRED.(which did its job) and Colazal---which I was maintained on for about 3 years--
Now I am fine----but battleing the DREADED CONSTIPATION ---due to surgery on my back--

So once again---

here---where U will learn so very much---and start your way to the *wellness* road----we are here in good times--bad times---and *venting* about anything times!!!


happy to have U aboard

Barbara

[Jan]

Welcome Mackenzie. I hope you take time to continue to read as many posts as you can in all the sections of this website. There is a wealth of information.

I found after I was diagnosed with MC that it was a journey to get into remission. Know there were potholes, detours, and rough roads as I worked my way through this.

Good luck on your own journey.

Jan

[G'ma Mary]

Welcome Mackenzie;

I love your name - I know a couple of others with that name and I think it is beautiful!

However, the reason we are here is not so beautiful, and I welcome you to our internet family! We are all here for the same reason and most of us have been where you are - others are still there. I believe your questions have been answered, so I won't repeat. Just search all you can here, ask any questions you may have, come tell us how you are handeling the journey you are on (Jan's description of this journey is wonderful) and you are welcome to describe in any detail you desire what is happening with you. You can not gross us out - we've been there and no one but those of us who have experienced it can relate.

Again, welcome!
G'ma Mary

[JJ]

Welcome! Glad you found us...this is a greaat group for support and information....

Take care....and welcome...JJ (Jill)

[wkm62]

gone

[Mackenzie]

Thank you all so much for your responses. I'm amazed at the caring nature of this site. I'm so glad to have found it!

Courtney- I'm very happy to know someone else my age has this dreaded disease. Ugh- I hate the word disease. The "very active" comment was doctor talk and refering to my hernia, I was told they usually occur in older adults who live a more seditary lifestyle. But that was my old GI who told me that I had IBS too, so I don't really hold much to what he had to say anymore. Thanks for the info.

Tex- Thank you for all the detailed information. I did read about amoxicillin being a factor in cdiff on this site. Good news- I'm allergic to it anyway, so no worry there. I'm sure i will have more questions for you as I go along on this journey and continue to check out the pages on this sight. You have a wealth of knowledge and I'm glad to have found you!

JJ, Mary, Jan, Joan- thank you for the welcome! I'm sure I will talk to you all often!

Barbara- Mack is just fine!

Wayne- Thank you for your thoughts. I have read alot about testing the function of my gallbladder and until the dr. says I should I'm ok with not doing it. The only real pain I have is cramping, no gallbladder related pain right now. But gallstones run in my family so I imagine someday I will have to get it out. The dr. started me on cholestyramine because I thought my problems could be from a malfunctioning gallbladder. His recommendation at the time was not to get it out if I can control all this with medication. So only time will tell. And I started to look thru the site for Enterolab and for right now I'm going to see what my GI says before I go that direction.
Thank you for the "heads up" on Cholestyramine interfering with other medicines- I will check on that!

Thank you all for letting me know Tylenol is safe! I'm very happy to know that. Funny enough 2 years ago I got a sports injury and my dr. said no no to Tylenol and prescribed me Motrin and that's what I took then and what I've been taking since for headaches ect. Who would have thought it was probably making me worse!

Since I was told by phone that I have MC and haven't seen a doctor since I'm very happy to know all of this. I'm going to see my GI on the 6th to get the "plan of action".

Thanks again and Happy Holidays!!!

[Dee]

Mackenzie!!
Happy to see that you have joined our online family.
Keep the faith, for things will get better.
We are all here to support you!

Dee~~``

[JLH]

I can practically guarantee that your doc will poo poo the idea of Enterolab. Mine was a real pain with me and with the EL nurse but she did finally write the order. I kept saying that I was going to do it anyway so why wouldn't she write it.

[angy]

Hi Mackenzie


you have discovered a great family here and we will help you with any questions as most of us have similar issues...you can always vent here and everyone is understanding of mc as most of us are suffers old and new.

sorry you have been dx with mc and i hope you start to feel better soon with the meds for the time being..

The same story for me too, negative celiac test but i have gluten sensitivity and and its hard trying to prove that to any gi doc...dx with collagenous coilitis in june 08...

look forward to reading your posts...oh! and merry crimbo!!!

[Lucy]

Hi Mckensie, and welcome aboard!

Sorry to hear such a young person as yourself is having this kind of trouble, but, on the other hand, glad that it didn't take you until middle age to get the biopsies and diagnosis. I'm actually glad that you had the upper endoscopies -- that way, the doc got a chance to look for any other serious possibilities that might've been co-existing with your M.C. in the colon. It's also good that you had the more accepted blood tests for celiac BEFORE you got too far into a trial off of gluten. That way, if you find yourself getting better over time, you won't have to go back and make yourself sick again eating that stuff, just to re-flatten your villi. I have actually heard that sometimes people have to eat gluten for a whole 6 months to be sure they are sick enough to do the traditional celiac testing. Once you start to get better on diet, I can guarantee you'll not want to start pigging out on that stuff to get sick again!

By the way, did you also have the gene testing for celiac disease at the same time? If not, you might want to get those through Enterolab as they have someone do their tests who will also report back to you some of the other genes that we have found relevant to our M.C. in addition to the two which most classically diagnosed celiacs have.

I should think that insurances would cover the gene tests with the lab that does these for Enterolab as a gene test is a gene test is a gene test in any lab that is certified which theirs is, just like any other labthat does this gene testing. This should be true regardless of whether or not the insurance will cover the stool tests that Enterolab does.

We are still awaiting peer review for the stool tests, but they are used by lots and lots of celiacs, particularly if they have children, as children don't like to get stuck with needles. Their admitted false negative rate is about 5% which is pretty good by most labs standards. I believe where these stool tests help is when all the standard blood tests (hopefully sent to Promethius lab or Mayo clinic if your doc is set up for that) come back negative, but the person has M.C. The lack of peer review is what's holding up publication in the big journals where the GI's look for justification for their treatment, but that could take years.

I wouldn't worry about false positives -- if you test positive for gene sensitivity with a stool test, then you are sensitive to gluten -- end of story. If you are unlucky enough to fall within the 5 % who are gluten sensitive without showing up positive with the stool test, then all you'll have to go on will be your own response to being totally off gluten. I just think that with those odds, it's worth gift wrapping a little poop to mail to Dallas.

What I did first, however, was to do a trail run of being very, very strict (no cheating), eliminating everything that contained hidden gluten as I studied feverishly to learn where all the silly stuff was hidden in our food supply. You won't BELIEVE how many of the strangest things have gluten in them!!!

I was one of the fortunate ones who, even though I later discovered I was reacting to a few more foods, was able to FEEL sooo much better and have so many other seemingly non-GI symptoms (including body pain) get better without even then knowing about all the hidden stuff, that there was no doubt in my mind that I was way sensitive to gluten, and it didn't take long at all. That's the ONLY advantage I can think of to all the pain and non-GI symptoms I was having. The amounts and frequency of the diarrhea went down rapidly with the other symptoms, but I had to find where all the hidden stuff was and later, remove a few other foods before the diarrhea left, and gradually, I worked my way up to a normal stool. Let me mention here, however, that some people on this board seemed to have almost as strong a reaction to some of the other foods as they did to gluten. Also, I think it may be an additive effect when you are eating more than one of them, so each one you peel off, assuming you have more than just the gluten, you may note a rapid reduction in symptoms. The other thing is that healing takes time, itself, even off everything that you might be reacting to.

I may have even had celiac along with the M.C, from my symptoms -- lots of fat in my stools, and some antibodies to my own tissues show up in my stool test results, but I was way too much better in terms of illness to go back on gluten at that point for the standard testing. I was five years off of gluten this past Thanksgiving, by the way. I'm not going back on gluten...ever, anyway, so since that's the standard treatment, what would change anyway?

It is difficult, especially right at first while your learning curve is sooo very steep, but after a while, gf-ness gets to be second nature.

Many young people would have a hard time going to a party and not eating gluten, but it sounds like you'd be thrilled to be able to eat anything at this point! After a while, you learn which restaurants are accommodating and which ones you can trust to do what they say they are going to do. When you are able to tolerate fruit, you can often have a bowl of fruit at parties and other occasions, and you'll learn to eat before you go, and carry a little gf snack in your bag/car just in case you get stuck away from home.

Whatever you do, don't stock up too far ahead on a bunch of gf junk food -- perhaps a few processed things that others say are good -- things similar to things that you might ordinarily have eaten in your gluten eating life.

I would go with uninjected meats, frozen veggies without anything in them other than vegetables, and cook them soft as can be to see if you tolerate them. Potatoes and rice are good substitutes for bread.
A good extra virgin olive oil, like Spectrum, was easy on my gut, and tastes good on these.
If, at first, you have trouble with the frozen veggies, you might just drink the water you cooked them in as it will be loaded with nutrients coming out of the vegetables. White rice may be a little gentler on your gut right at first due to the fiber. I found Uncle Ben's in the boiling bags to be energy saving which was a big plus for me, as my energy was in the cellar. It took 6 months for that to go away -- by far the longest symptom while the gut was healing. Salt and maybe pepper are great right at first til you can work your way up with all sorts of flavors that you can add. You'll find that you'll actually eat more variety once you've got the foods you react to out of the way. It can actually be fun finding ways to make things taste good.

Oh, and be sure to get uninjected meats. You may have to shop at the health food stores like Whole Foods, at least right at first til you learn what to shop for. Chicken would probably be a pretty gentle food to start with. These are just suggestions until you get a little control over your symtoms. Then, you can eat a pretty normal looking dinner after a while, especially if you fix it yourself because you'll know which ingredients are safe, and which are not.

What I did was check how I felt on diet, and THEN order the stool testing as I wanted to see if the diet was going to work before spending the money. This worked just fine for me, but then I had a very sharp decline in symptoms right away, and still had enough antibodies in the abnormal range on Enterolab's testing to be sure it matched my experience of decreased symptoms while gf. I mean, I had NO ambivalence about it. As many people as I've read about here since then, I've learned that some have to wait a long, long time to see a response. I'm not sure I would've been that patient! If you want to do a trial, I wouldn't wait any longer than a couple of months to send the poop in as you have a little more time to catch the antibodies with the stool test than you do with the blood antibody test. Problem is, what if by two months, you are still having symptoms? Going ahead with at least the gf portion of the test will tell you whether or not to continue. It just may be that folks who only have the diarrhea may take longer than those of us with other somatic symptoms that are more recognizably responding to being off gluten.
On the other hand, it's cheaper to do the tests in a block of tests, not to mention the convenience of doing fewer samples. I first did the package with the dairy thrown in with the gluten antibodies, the genes, and the antibodies to my own tissues, and fecal fat test. In a few months, I did the eggs and dietary yeast, followed by the soy test when it was available a long time later.

My experience with diet matched the results perfectly. I have had normal stools consistently for some years now, and enjoy a new swim team when it's not too cold! I haven't had to go on medication to relieve my symptoms. To not get off gluten can lead to other harmful and sometimes irreversible conditions such as osteoporosis. I had already lost my gall bladder and just before the M.C. diagnosis, my entire thyroid, not to mention diverticulosis, there are other more serious conditions we are predisposed to, unfortunately. At the moment, I'm wrestling with the decision whether or not to take medication to put a halt to my osteoporosis. It's a tough decision since I've been so fortunate to have been able to avoid medication up til now. other than replacement for the glands removed, of course.

I'm just glad you had a good GI who knew how to biopsy to get the M.C. for the pathologist, and one who apparently knows when to suspect celiac disease. This just shows how the word is getting out to look for this stuff, even if they don't know to look for a wider presence of gluten sensitivity than just flat villi. I have a feeling that when/if you report good results back to him with your dietary trials, that it just might not come as a surprise to him. If he's like alot of GI's, he may be afraid the diet will be "too hard." They think we're wimps, ya know!! Ha!

There's probably even more that I could've responded to but it's very late here, so will have to give your eyes a rest for now.

By the way, you might just want to eat a little of the obvious foods with gluten to enjoy whatever is served at Christmas THIS year, and start eliminating all that stuff the next day, if possible, or at least the obvious sources of it. I had one croton sized piece of bread from Outback my last intentional bite of gluten on Thanksgiving night of 2003. Kinda helps to have a marker like that to remember. Then, you've got a whole year to work on a really good gf Christmas next year! Ha!

Best wishes and Merry Christmas!
Luce

[MaggieRedwings]

Hi Mack and welcome to our family.

You have undoubtedly found the best source of information on the internet right here. I have had MC for 8 years and and now control as best as I can with diet alone. No meds really worked for me either to the effect that they did nothing or the side effects as a result of them. There is light at the end of the tunnel and for some of us it may take longer than others.

Again welcome and glad you found our family.

Maggie