TA DAAA! My MC is GONE!

[Deb]

Polly, I am just curious. Have you been able to add any of your intolerances back into your diet? Deb

[Lilja]

I hope the Prometheus test and the barium x-ray series is negative. That barium x-ray exam was one of my least favorite tests, because I was as sick as a dog when I had the test, and it made my nausea worse, and the exam seemed to take forever, and then later, it caused severe constipation, and it took me a long time to get rid of the barium, afterward. Otherwise, it wasn't too bad.

Now, that's interesting, Tex!

I have never ever been so sick as after having swallowed barium sulphate prior to an x-ray exam. From the time I swallowed it, and until my body became a wreck, it took 4 hours.

My whole body was covered with red spots, itching all over. I had cramps in my legs, in my stomach, the D came back at full speed, and I vomitted for three days.

It took me 3 months (!) before the rash and the itching were gone, and I could feel "normal" again.

When I called the x-ray institute and told them about my reaction, they only responded "We have never heard of a similar reaction to barium".

After this I have tried to find out if this reaction is common, without any luck.

Lilja

[tex]

Hi Lilja,

You clearly had an allergic reaction. There may have been an additive that you reacted to, rather than the barium sulphate, but I have no idea if those solutions even contain additives. It's certainly possible to be allergic to barium sulfate, although it's rather rare.

In my case, I didn't have an allergic reaction to the barium — I was as sick as a dog from MC before the test was begun. And all that barium in my gut just made things worse.

Tex

[rcb0973]

Polly, Fantastic! What an accomplishment. I'll definitely be sending this page to my former GI!! It won't matter to him, because he is a jerk. I functionally accomplished the same just by going on a "vanilla" gluten-free diet, and that has been enough for me. After having MC for over twelve years, it feels absolutely fantastic. Its been four months now with no gluten and no Entocort (was going to cost $2,500/month -- "forget that"). The jerk wants me to another colonoscopy, and I told him the he would have to get his vacation money from someone else!

Yahoo!!

Richard

[Erica P-G]

Hi Polly,
After having MC for as long as you did, did you have Entocort/Budesonide during that time? I have had MC for 8.5 years started in 2007 and have been on the elimination diet for almost a month now (because I sent blood samples off so I have a better idea what to stay away from) and off Gluten for almost 3 months.

I'm so inspired by your results in 2010, and the fortitude of 5-10 years that it took to reach remission and get a final colonoscopy of MC Clear that I am focused on just that same result.


Erica

[tex]

Erica,

In case Polly does not notice your post, I can tell you that she has never taken Entocort.

Tex

[Erica P-G]

Thank you Tex!

I was just curious

Cheers
Erica

[JLH]

http://www.livestrong.com/article/55073 ... m-sulfate/

[Lilja]

http://www.livestrong.com/article/55073 ... m-sulfate/

Thank you, Joan. The article describes exactly my reaction. It was awful.

Lilia

[Nan]

First, CONGRATULATION Polly! Second, thank goodness, MC can be healed and some normalcy gained. Wahoo!

Having been diagnosed with MC in November 2014, yet unable to see a GI until mid January, I began my rush to research, reading books written by one expert after another on autoimmune disease, healing the gut, food intolerances, etc. I found this site in February and gratefully ordered and read Tex's book. Unfortunately the overall result of my efforts to get a handle on this inexplicable illness...I've always been a health nut...was to try a bits of everything that everyone was espousing, in an effort to manage and heal with diet alone. The result? Five month of worsening D, to the degree that I began to think that my insides were melting. Finally, understanding clearly what wasn't working, I went back to Tex's book, better able, and more willing, to do whatever he suggested. Using the Pepto Bismal and 5-non inflammatory food protocol, I can say that my stools are approaching normal this week.

One of the worst things is that I feel alienated from the world that I know and love...that of a foody who (so I thought) could eat anything but chose judiciously. Now, I fear that I have to give up everything that I love...cruciferus veggies, nightshades, dairy, grains, fresh fruits, legumes, all fibrous foods, on and on and on...in order to live with this. At this point I will do whatever it takes, but your post gives me hope that some day I can have some of these foods back in my diet. Please say it's so

[tex]

Hi Nan,

Welcome to our Internet family. Yes, this is an alienating disease, but our life becomes much better as our intestines heal. It sounds as though you are making good healing progress with your treatment program. Good for you. I hope that your progress continues.

Most of us find that after we heal a while, we are able to slowly reintroduce many foods back into our diet. Trying them one at a time, starting with relatively small servings at first, is the best policy. This allows us to tell whether we have any problems with them, and it gives our small intestine time to once again become accustomed to producing the enzymes necessary to properly digest them. Many vegetables (even raw vegetables), salads, fruit, and various other sources of fiber, including certain grains (but never wheat, rye, or barley) can typically be added back into our diet after sufficient healing has taken place. The avenin in oats is similar to the gluten in wheat, so most of us here are sensitive to oats, but a very few members are able to tolerate oats.

Nightshades are not necessarily a problem for everyone. While citric acid is a problem for many of us during our recovery, most of us can tolerate it after we heal. That means that many/most of us can tolerate tomatoes after we heal, and most of us have no problems with potatoes. When you receive your results from EnteroLab you will be in a better position to fine tune your diet.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Nan]

Hi Tex, thank you so much for responding to my post. Although these are my first two posts, for about a week I have been 'studying' subject after subject here to try to better understand this disease and how to deal with it. One thing that I noticed immediately, and frankly am quite taken by, is how kind and responsive you and the other moderators are. You all invest a lot amount of time patiently helping members and answering questions and concerns. Bravo! I've learned so much just reading other posts.

I received my Enterolab Lab results mid February...38 units anti-gliadin, 18 -ovalbumin, 19 -soy, 9 -casein, and 14 for the 11 antigenic foods, corn and oats being the only 2 with 3 +. Having called the lab twice and read Dr Fine's site to better understand the ramifications of this, and immediately going glutin free (I have been sugar and "all white and refined stuff" for many years'), I think that I've been in denial about the other foods, thinking that if I could 'heal my gut' with other healthy whole foods...organic veg, fruit, meat eggs and dairy...things would settle down. I know, at this point you are LYAO because, of course, things have only gotten worse. It's all gone in and right back out. Rereading your book, and being WILLING to listen, I'm now accepting that many healthy foods are no longer good for me, especially fiber. Shoot, it makes me want to scream and cry, but as you've said the stress is also a negative factor, so there's nothing left to do but acquiesce, although still pouting.

How will I know when my gut is healed? My primary symptom is watery D, gas and bloating after some meals (which I came to believe was normal), but luckily no pain to speak of.

A side question, I'm trying to post a photo, but am getting a response about photo size restriction and don't know what to do to remedy that. I see a link to add image to post, worked with it, but don't see a result.

[tex]

Hi Nan,

I appreciate your kind words. I can't speak for others, but I believe that the reason why I feel sort of obligated to spend as much time as possible trying to help others who have been diagnosed with MC is because I will never forget how hopeless and lonely I felt when I was so sick, and it finally dawned on me that my GI specialist wasn't going to be able to help me. No one should have to feel that way.

How will I know when my gut is healed? My primary symptom is watery D, gas and bloating after some meals (which I came to believe was normal), but luckily no pain to speak of.

You will know that your gut is mostly healed when the last of your fatigue and brain fog disappears. The symptoms of D, gas, and bloating will be resolved first (usually within a matter of weeks or months), but it typically takes a couple of years or longer for the damage to heal in adult intestines (kids can heal in a year or less).

Regarding a photo for an avatar, yes, the system is picky about file size. Please feel free to do what many other members do, and attach your image file to an email and send it to me and I'll be happy to convert it into an avatar and upload it for you. Just click on the hidden message to see my email address.

[spoiler]pfarms@vvm.com
[/spoiler]

Tex

[Nan]

Possibly years to heal after the diarrhea subsides within possibly two weeks to a couple of months? The evidence being the end of foggy mind and fatigue? I'm not sure I will know the difference; I've felt this way for a long time. Being intent on eating whatever my body can handle, can I attempt to reintroduce foods like berries and broccoli and tomatoes before that, trusting my body to tell me if this acceptable, or does it not work that way?

Not knowing how things are preferred on this site, should I have begun a new thread in the general topics area, or is it acceptable to continue to ask questions in this manner? I know that I learned much from the give and take on subjects that had titles that drew my interest.

Again, thank you for your time

[tex]

In many cases it takes longer than a couple of months, but the main point is that remission of the GI symptoms will come about long before the neurological symptoms fade away.

I'm not sure I will know the difference; I've felt this way for a long time.

Many of us had symptoms for a long time and thought the same way, but eventually we began to notice that we had more energy, and we were more ambitious about doing things that we hadn't felt like doing in a long time. And when the brain fog begins to clear, you will notice that you can think clearly again, and you'll be able to concentrate on problems that were too difficult to tackle previously.

Being intent on eating whatever my body can handle, can I attempt to reintroduce foods like berries and broccoli and tomatoes before that, trusting my body to tell me if this acceptable, or does it not work that way?

Sure. After you have been in remission long enough to be sure that you are stable (at least a few weeks), you can test foods to see if you can handle them. The biggest problem with testing too soon is that it can be discouraging, so it's best to first try foods that are relatively safe. For example, broccoli is much safer than tomatoes. Broccoli may cause a slight gas problem, but it can do that for anyone, not just MC'ers. The citric acid in tomatoes usually takes longer before we are able to tolerate it, though. Berries should be safe to try, as long as you keep the serving size small enough that the fiber doesn't cause problems. As you continue to heal, you should be able to tolerate larger servings of foods that are sources of fiber.

It's usually best to start a new thread for new topics. That makes the discussions much easier to locate later when someone does a search for specific topics. However, we're very informal as discussion board protocol goes. And because of the nature of the symptoms of this disease, considering some of the discussion topics, it wouldn't be easy to try to pretend to be dignified and formal, anyway. On some boards, moderators get all bent out of shape if someone posts in the wrong place. That's not a big deal here. With MC, we don't need any unnecessary stress.

After you enter a couple more posts, the system will allow you to search the archives, using key words, and you will be able to see the contact information for other members. That information is temporarily unavailable for new members as a security precaution — it helps to prevent spammers or computer bots from signing up to mine personal contact information.

You're most welcome,
Tex