Entero Lab

Trace · Post by **Trace** » Wed Feb 20, 2008 12:08 pm

Hello.

I was diagnosed with MC in 3/2005 and Fibromyalgia in 9/2005. There have been periods of relief since then...just not in the past 10 months. I can't take steroids or Asacol. My gastro says to take Pepto Bismol, which I drink by the bottle. He's "done all (he) can do."

Well, I'm sure he is limited only by his lack of information. All bitterness aside, I've managed to flare up horribly with the MC, fibro, and myofascia issue..Life is spiraling, as you all know it tends to.

Here's the question that I have, in my own research, I've come across the idea that gluten may be the issue. No news to you...but to me--a lightbulb! I've given up dairy...sometimes I cheat, but I love oatmeal and cheerios. I think there's an intolerance for all preservatives....can that be?

I've found the website for Dr. Fine, and I'm curious as to how many of you have had the testing he provides? I had a blood test for celiac sprue which showed nothing. After reading his information, I think I'd like to pursue this. What can you tell me?

Thank you so much! I'm glad I've found you!

Trace

ErinD · Post by **ErinD** » Wed Feb 20, 2008 12:53 pm

I recently received my test results from Enterolab and found I am gluten intolerant. When i told my doctor her dismissed the whole idea. It seems the everyday GI doc does not put much merit in Enterolab, but many people have gotten results, gone gluten free and found much relief!

I had the blood test as well as an upper endoscopy with biopsy done and they all came back negative for celiac.

Trace · Post by **Trace** » Wed Feb 20, 2008 1:11 pm

Erin, could I ask? Did you have other tests done at EL or only the gluten? I've given up dairy, but I wonder if the soy milk I drink might contribute some problems? And I wonder if I even had to give up the dairy?
I think that I want to do the whole panel because I eat eggs and grits at least 3 times a week...

thanks

Post by **tex** » Wed Feb 20, 2008 1:50 pm

Hi Trace,

and welcome to our internet "family". I'm sorry to see that you've been dealing with this problem for so long, without relief, but I can assure you that there are solutions that work, and I believe you are definitely on the right track to suspect gluten sensitivity. Not all of us are sensitive to gluten, but a very high percentage of us seem to be very sensitive to it, and almost all of us who are, will test negative to the classic celiac blood tests.

Yes, many of us have had the tests at Enterolab, and we have found them to be very reliable. I don't know if you are aware of this, but Dr. Fine is a board-certified GI doc who decided to specialize in that particular research, because he has MC himself, and he maintains remission, by diet alone.

If you ever read any of the celiac forums, you will find that most of the members of those forums have also been tested at Enterolab, and they also trust the results, (after all, it's hard to argue with success). It's interesting to note that many/most of them also comment that their doctors don't believe in stool testing, or have never heard of it. Enterolab's tests are a relatively new development, (within the last ten years, or less), and the medical industry is typically very slow to change their thinking, (I'm not accusing them of being old fogies, but I will say that as a group, they seem comfortable using obsolete technology, much of the time, and it often takes them 15 or 20 years, (or more), to change their attitudes).

Long-term use of Pepto-Bismol can lead to a toxic buildup of bismuth in the body, so you definitely need to consider some other form of treatment. You say that you can't take Asacol - does that also rule out the other 5-ASA meds, such as Pentasa or Rowasa?

I had the same experience as you. Just like you, when I first read about gluten sensitivity, the light bulb came on. I really didn't think that such a simple thing could be making me so sick, but I cut it out of my diet, just to see, and I seemed to be doing better. I still got sick, though, until it eventually dawned on me that I also needed to cut out all dairy products, and when I did that - Bingo - I got my life back.

Soooooo, if you can't, or don't want to use steroids, or any of the 5-ASA meds, then restricting your diet may well be your salvation. Many of us here have gone that route, and as long as we are faithful to the diet, we are absolutely symptom free. As a side benefit, a GF, DF diet may also eliminate your fibromyalgia and myofascia symptoms. At the very least, it will almost surely minimize the symptoms. Many of us had those symptoms, and would probably have ended up with a diagnosis, if we had pursued them with our doctors, but the symptoms went away, as we were able to control the MC inflammation in our gut.

I can guarantee you that no one truly understands MC, unless they have it. That makes sharing experiences on a board such as this, a very enlightening process. I can't speak for everyone here, but I find that I learn something every day, and most of it is information that I could never hope to get from my doctor, because he will never know as much about MC, as the knowledge that has been accumulated about it here.

Again, welcome to the group, and please feel free to ask anything. You are among family, here.

Tex

P S If you get the additional tests, it eliminates having to wonder about the other possible intolerances. Many of us here are also intolerant of soy. Even more of us are dairy intolerant. It is often helpful to get the gene test also, to see just how susceptible you might be to gluten sensitivity, if you don't already have it. If you do already have it, the gene information can be helpful for pinpointing the source of your sensitivity, (that is, whether you have either of the celiac genes, or they are other genes linked with gluten sensitivity).

Pat · Post by **Pat** » Wed Feb 20, 2008 2:13 pm

Trace,

My newest doctor actually recommended Dr. Fine's testing including the genetic testing ( which is done by the American Red Cross BTW). Unfortunately for me eliminating gluten and dairy and soy hasn't done the trick. I am now on steroids. I have gone back to Dr. Fine's dietary advice and am following his advice which he says also helps fibromyalgia which he also has in addition to the MC.

http://www.finerhealth.com/Lecture/sld006.html

I never would have stayed on the GF, DF, SF diet had I not had the testing.

Pat

Gloria · Post by **Gloria** » Wed Feb 20, 2008 10:26 pm

Hi Trace

I had the Enterolab testing, primarily to see if I was gluten-intolerant. I decided to have all the tests just to rule out any other intolerances. I was stunned when my results showed that I was intolerant to every food tested by Enterolab. I suspect I have even more intolerances, but I haven't been able to determine them by myself. The tests made everything much easier.

I've found that initially following a GF diet was hard, but it's become easier as time has gone by. There are many alternate products available and discovering a new food I can eat is a happy day!

I've been maintaining a fragile remission on 6 mg. of Entocort per day. Any deviation from my GF, SF, EF, DF diet causes slight problems as does a reduction in the Entocort dosage. I'm still grateful for Entocort because it's given me back my life.

Trace · Post by **Trace** » Thu Feb 21, 2008 9:58 am

Everyone, hank you for responding! I'm going to see about the testing ASAP. I'll be interested to see what I'm sensitive to..I may be as surprised as Gloria!

Tex, thanks for all your information. As I've gone through the other posts, I see you are a great source of information. In response to your question about the meds: I had a terrible reaction to Asacol. My Pharmacist told me that I'd just basically ruled out any med on the market for myself. He also advised that I try the Pepto. But, I didn't know that it could build up...so, I need to quit that! As for steroids, I don't sleep. At all. For days. I'm just over-reactive to meds...Benedryl puts me to sleep for at least 18 hours. I try to stay away from them if I can.

I have other questions that I'll ask in another post. Thanks for your help!

starfire · Post by **starfire** » Thu Feb 21, 2008 3:13 pm

Isn't it strange how we all react differently to meds. I take Asacol with no problem and Benadryl keeps me awake all night.

I hope you have started on the road to figuring out what works for you.

Welcome to the board, Trace.

Shirley

Gloria · Post by **Gloria** » Thu Feb 21, 2008 6:27 pm

I was initially very nervous about taking a steroid. I had the jitters from being on Prednisone for just one week years ago and couldn't sleep at night. But I've had no side effects with Entorcort. I haven't noticed any mood changes nor changes in my sleep habits. I've actually lost 6 lbs. while being on it, but I attribute that to the change in my diet. I hardly eat any desserts or sweets anymore. Not that I don't want to!

Gloria

harvest_table · Post by **harvest_table** » Thu Feb 21, 2008 10:54 pm

Hi Trace,

I have not had Entrolabs testing done but this caught my eye.

Trace wrote:I had a terrible reaction to Asacol.

Asacol was the first med my GI suggested after my DX with CC and it made me so sick. I was in such bad shape already with chronic D and all the other stuff- it almost pushed me over the edge- compounded the D ten fold. If I recall, these symptoms happened after taking my first pill.

You may have a problem with diary products. Asacol contains a formation of them. Glad your getting the tests and let us know the results.

Thanks for posting!

Joanna