Help, I'm new

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JoAnn
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Help, I'm new

Post by JoAnn »

Hi everyone, I'm so glad I found you. I have been struggling for over a year trying to figure out what is wrong with me. I had so many strange symptoms and went through so many tests. I was diagnosed last Jan. as hypothyroid and have been treated for that, but always had bowel problems and diarrhea with it. Finally, last August after a colonoscopy, I was diagnosed with MC. I've been on Asacol, (2 tabs, twice a day) but no improvement. I am now experimenting with the Pepto-Bismol. I'm so overwhelmed and I had to cancel a vacation to Hawaii that we had planned for for over a year because of my symptoms. My GI just tested me for celiac and it came back negative. I'm 56 and have been pretty healthy most of my life until the last few years. I even took a medical leave the past 3 months from my teaching job to try to get my thyroid and colitis in balance.
The thryoid seems to be managed, but I'm still trying to figure out how to manage the MC. I will go back to work on Jan. 5, but wish I could be less worried about the MC. From what I've read on this site, it seems to be a course of trial and error. I'd appreciate any moral support, encouragement, and advice you might have. Thanks, JoAnn
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Post by JLH »

:welcome: JoAnn

Our fearless and phenomenal leader, Tex, is on a trip or he'd be here to greet you.

Read as much as you can here and at www.Enterolab.com

I got my dx on a Friday and by Monday I was gluten free (GF), thanks to this site. I did really well with no other meds except Welchol (GI told me to choose either Lialda (5 asa) or Entocort) for around 2 months. When I saw the GI at my first appointment, I wasn't doing quite as well and suspected another intolerance. I did the rest of the EnteroLab tests and found out soy was the culprit.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

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Post by JLH »

Your docs will poo poo (pun intended) the gluten connection but believe me, it is real. :lol:

Dr. Fine of EnteroLab used to prescribe Pepto as a treatment but doesn't any longer.

You can use the site search NOT the Google search to search this site.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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Jan
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Post by Jan »

:welcome: JoAnn

I hope you take the time to read past posts and look in other areas of this website. There is an enormous amount of information available. And with that information is a whole bunch of folks willing to give you support also.

Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
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Post by JoAnn »

Thank you Joan and Jan. Just hearing from you is such a comfort. I have felt so alone and I suddenly feel like I have new friends who truly understand what it is like to live with this. I have spent most of today searching this site and the Enterolab site. My GI is the one who put me on the Pepto-Bismol routine. I go back on Dec. 22 for a follow-up. Could you tell me where you found out that Dr. Fine does not recommend this? Thanks for you help and support. JoAnn
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Here's a Pepto thread

Post by JLH »

http://www.perskyfarms.com/phpBB2/viewt ... ight=pepto

Tex was the one here who said it was a Dr. Fine treatment at one time but not any longer.
DISCLAIMER: I am not a doctor and don't play one on TV.

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Joan
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another pepto thread

Post by JLH »

DISCLAIMER: I am not a doctor and don't play one on TV.

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Post by JLH »

DISCLAIMER: I am not a doctor and don't play one on TV.

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Joan
Dee
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Post by Dee »

Hi JoAnn :wave:
Happy that you found us.
Now you can step by step gather information and eventually get your MC under control.
Some here just use meds, meds & diet or just diet, but whatever route you choose doesn't change things overnight.
I personally take Entocort EC, 2-3mgs every morning and since I was diagnosed as being gluten, dairy & soy intolerant, I also avoid those. So, I use a med (my safety net) and diet and I have been successful at controlling my symptoms.
Depending on what you choose, and your concern about going back to work on the 5th of January, you may want to ask your GI about trying Entocort EC 3-3mgs every morning to see if it will get your potty visits under control. Then if you decide to be tested by EnteroLab you can go from there.
Keep reading and asking questions.
We've all walked in your shoes!!

Dee~~~~
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Post by Gloria »

Welcome JoAnn!!! :hello:

I'm happy you found us, but am sorry that it was necessary. :???:

My GI originally had me take Pepto Bismol for my MC, but it made my symptoms much worse and I stopped it after a couple of days. Then he put me on Entocort, which is a steroid which doesn't activate until it is in the intestines. I was initially very reluctant to use a steroid to control this disease, but it has worked very well for me without any side effects.

In addition, I had the Enterolab stool testing done and have eliminated the foods for which I had postive test results. About 3-4 weeks after eliminating my intolerances and taking Entocort, I was having formed BMs and they were no longer urgent. At that time, I was working in a school (I'm retired now), but no longer teaching, so I was able to run to the bathroom when necessary.

Most of us have achieved remisssion, or are trying to achieve it, by taking medications, following a gluten-free diet, or a combination of both. Many also have to eliminate casien, which is the protein found in dairy products. A third common food intolerance is soy. We use the term remission to describe a relief from our symptoms since we're never really "cured" of MC; ie., we always have to treat it using either medications or by following a strict diet free of "triggers."

I've never taken Asacol, but it seems to me that you should have found some improvement by now if you've been on it since August. Others here have taken Asacol and will probably share their experiences.

You might want to consider going gluten-free and/or asking your doctor about Entocort. You can find more information about a gluten-free diet here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=6

There is a great deal of information on this site, which I'm sure you've discovered. As Joan mentioned, our resident expert, Tex, is on a trip, but there are many others here who will be happy to answer any questions you have. Please feel free to ask us. No question is a dumb question (to borrow from my teaching days) and you needn't feel any topic is too gross. We are all stool-watchers. Every visit to the bathroom is a test that we hope we'll pass!

Gloria
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JoAnn
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Post by JoAnn »

Thank you so much Dee and Gloria! (and Joan again for the update on pepto) At my last appt., my GI mentioned Entocort if the pepto doesn't work. I have an appt. on Dec. 22 and hope to make that change. I am also very interested in getting the tests done through Enterolab. I can't believe how much help and hope you all have given me in just one day. This burden has seemed almost unbearable the last few weeks, and you have lifted it and helped me realize that their just might be some light at the end of this tunnel. I can't thank you enough! JoAnn
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Post by Lucy »

Welcome JoAnn,

Nice to meet you!

At the outset, I just wanted to mention that Dr. Fine is the GI doc who did the original research and publication of his study on the Peptobismol treatment that your doctor tried you on. This was when Dr. Fine was at Baylor Med (the one in Dallas, not Houston. It is a "Center of Excellence" in the GI speciality.) It's funny, but many of the docs who prescribe this don't even recognize his name if you bring up his testing or dietary recommendations. I suppose that's understandable, but it is kind of funny when you think of it. If she or he doesn't recognize the name, you might just want to inform him of that..in a nice way, of course.

Thanksgiving was my fifth anniversary off of gluten!! It wasn't my only food to have to give up, but it certainly greatly reduced my many symptoms in a hurry. I got rid of the rest of them by removing the other foods I'm sensitive to one at a time.

It's late, but I wanted to ask if you'd mind telling us which test/s you had to rule out celiac disease.
Usually, the doc will do blood tests and gene tests, and if the results indicate, go ahead and do the endoscopy of your upper bowel (going from the top down). The best place to have the blood test for the antibodies is Promethius or even Mayo Clinic's lab test, but sometimes the docs aren't set up to do the tests with them, and sometimes they go with the lab that your insurance works with. There is a way they can get set up with Promethius if they want to go to the trouble.
However, the genetic testing that they do is strictly for either the HDL-DQ 2 or HDL-DQ 8. Those are considered the two genes that are conventionally thought to be necessary in order to have celiac disease. However, the experts now realize that a few biopsy proven celiacs actually have other genes in rarer cases.

Therefore, one good reason to do the gene testing with Enterolab is that they tell you if you have any of the other genes that are known to be present with gluten sensitivity (we consider this condition much broader than level of damage looked for by the pathologist after endoscopy to get you the classic celiac diagnosis.)

If you've already had your small bowel biopsied, that means that while the doc was in there looking around, he could rule out some other serious things that might put your mind at rest a bit, even if it didn't tell you you have celiac disease per se. If he didn't think the blood tests or gene test indicated he should look for celiac disease, then he MIGHT actually WANT to scope you (if you were to do a trial off of gluten for a short while on your own) just to see what's in there if you noticed any obvious results from diet. I have heard of this happening.

If you do this elimination diet, you will need to do it as completely and correctly as possible, remembering that it's highly possible with M.C. to have other foods to avoid that might cause some of the same symptoms, which can be confusing. I got myself off as much gluten as I could determine at the time I started being gf, and felt better in at least three days, but then I had horrible body pains and stiffness, etc., to begin with, and my migraines had gotten to be almost constant. Fatigue takes more like 6 months because one has to heal, so this was the last to go for me.

The good part was that at least I had severe enough other symptoms, besides just the diarrhea, that I knew within a week that there was NO doubt that I was sensitive to gluten. Other people may have a harder time telling if their predominant symptom is just the diarrhea. If you try a trial run off gluten, don't look for complete remission of diarrhea right at first, just improvement in terms of volume and frequency if diarrhea is your main symptom. Other things, such as my improvements are a plus in helping you to see if it's working for you.

As soon as you are sure you are having some positive response, then I would recommend your reporting this back to your GI, just in case that changes his mind about scoping you. Reason I suggest you call him back is that, if you are going to get scoped, better to do it while you are not very far into the gf diet as the doc will instruct you to get back on the gluten to re-damage the gut for testing purposes. I would hate for you to be off the gluten for long enough to heal as much as you are going to, and then, when you start feeling human again, for them to put you back on gluten for six months, making you as sick as you were before by re-injuring your small bowel and colon. In other words, if you can tell you are better right away on the gf trial diet, then let him know right away, and then, the ball is in his court.

I didn't do the scope for celiac disease, but Enterolab's testing and my symptoms and response to diet left no doubt that I'm highly sensitive to gluten even before I got the results back, followed by several other foods that I tested positive for.

I had huge amounts of fat in my stools and floaters in the bowl for a long, long time, plus many other symptoms and other autoimmune disorders.

I developed a sudden onset of a big ole goiter on my neck and ended up having to have my entire thyroid removed right after that series of thyroid studies. The M.C. diagnosis followed right behind that, which isn't unusual. However, I'd had symptoms of both M.C. and thyroid disease long before, and some of my seemingly unrelated symptoms, like migraines I'd had for decades, suddenly went away. I was your age when all this transpired, by the way. The antibody testing for the thyroid didn't turn out positive, but I've heard that thyroid antibodies don't always turn out positive, even though one may actually have an autoimmune thyroid condition, so my hunch is that mine was autoimmune. By the way, all my thyroid testing was unusual.

I put off trying the gf diet or even joining or posting with this group at the old site for an entire year (after the M.C. report came back after colonoscopy biopsies) until my reactions got so bad that my feet were swelling so bad I couldn't get my shoes on in the morning. Also, I'd developed arthritis in my feet along with the swelling which made me feel very unstable in walking, and actually had a few falls. Along with this, I lost lots of bone density and now have osteoporosis. I was leaking both fat soluble as well as water soluble vitamins and minerals (fat from the small bowel/water from the colon).

I have heard some reports of docs being able to work with their patients in reducing the amount of thyroid med they need once they've improved on their gluten free diet. I will always wonder whether or not if I'd done all this a few years before if I'd not still have that old ugly thyroid -- I mean the thing was BAD when they took it out! Others' docs have been able to work with them on reducing their BP meds. I never was on any BP medication, but it went back into a normal range after I got myself controlled off of gluten. This doesn't mean that everyone can do this, and any medications should ALWAYS be done under the supervision of a qualified doc, but it's something to consider if the diet makes you better.

Should you decide to give it an honest try, a local celiac group can really be of value to you if there's one in your area. Just be sure to not cheat here and there -- that won't tell you anything, and to keep on that steep learning curve. Also, the celiac sites can be very helpful online. If you cheat or don't keep learning where the hidden gluten is, you may still have lots of symptoms as your body reacts to smaller amounts in a big way.

I've told you more than I should about diet at this early point in your journey, but that's just because I never know for sure how soon I'll be back here to respond, due to a family illness. I will try to help out in any way that I can whenever I'm able to log on. There are many on this site who've been at this a long, long time, and many have helped me in countless ways.

It is possible to feel years younger. I'm on no meds for my gut, have normal BM's, and recently went back to competitive swimming or at least I'm working out with the team when life doesn't get in the way!

By the way, if you do decide to do the gluten antibody test first it includes a "free" dairy casein antibody test as well. Since I was already off of gluten, after I'd sent the test in, I went ahead and removed all dairy casein, and was able to stop the traces of diarrhea that remained whenever I'd ingest any of that. I therefore, wasn't surprised when I came back positive for that. Later, I sent in the one for eggs and yeast, so I removed the eggs for breakfast I'd only been having two mornings a week. I was pretty much off yeast anyway by then, and you can't totally remove that anyway, so before I got the positive results from the egg tests, I already knew what the report should say, and it was correct. It was a long time before I could do the soy test, and it was also positive as I suspected. I was very suspicious when one day I tried those delicious gf waffles that are made from soy flour -- had a major reaction to that. Somehow, the SanJ gluten free soy sauce hadn't bothered me all that much. I think that's because it comes from Japan where I don't think their soy is genetically modified as is ours in the USA. OR, maybe by then, my immune system wasn't quite so in overdrive!

That's way to much for one post, but hope it helps and isn't too confusing.
Good health to you!
Yours, Luce
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Post by starfire »

:welcome: JoAnn

I am very curious about why you are only taking 4 Asacol a day. I believe the normal dose (to start) is 6 per day. 2 tabs 3 times a day. Even at that dosage it normally takes quite long time for Asacol to make an improvement. I maintain on 4 Asacol per day now but when I was first diagnosed I took a steroid along with the Asacol (6 per day) to achieve faster results. I eventually cut out one dose of Asacol on my own and that's how I got down to 4 a day.

I don't know if any of what I said will make a difference to you, but I was really surprised when you said you are taking 4 tabs per day.

I'm sure you will find some help here on this board. I belive it's the most informative site on the net for M.C.

Please join in, ask questions, whatever. It's just really nice to know that you aren't alone in this. Most people just don't understand what it's like to deal with this disease.

Shirley
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JoAnn
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Post by JoAnn »

Good Morning and thank you Luce and Shirley. I was tested for celiac disease on Dec. 1. My doctor ordered a Celiac Serology test through Prometheus. I received a call last Mon., Dec. 8 from his nurse telling me it was negative. That's all the information I've been given, but hope to learn more at my next appt. Thank you Luce for all the information and direction. I'm definitely going GF to see what happens and I'm ordering the tests today through Enterolab. I'm sure there is some connection between my thyroid problem and the MC, also. My main symptom with the MC is diarrhea and pain in the gut area. Shirley, you mentioned the dosage of Asacol. I never knew to question it. Do you think it is worth trying the 6 tablets before trying Entocort? Thanks again for the information. I will be reading and re-reading it and will probably have many questions. Thanks JoAnn
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Post by JLH »

My pain in my lower left (which prompted me to have my first colonoscopy) turned out to be diverticulosis.

It was bad but now doesn't even bother me. :smile:

My GI was not at all cooperative with me or the EL nurse on writing an order for the EL tests. I wanted her to order it just in case my insurance would cover some of it. I kept saying, I'm going to order it anyway, I don't understand why you won't do it. She finally did it after she gave the EL nurse the same hard time. (I was surprised when she said the EL nurse could call her.)
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LDN July 18, 2014

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