Update

[GLJ]

Hello everybody. I thought I'd let you know how things are going. Sunday I started not doing so well again. Just can't stop feeling nauseated and burning in my stomach. My D issues are still mostly in the morning. Monday I had extreme anxiety and my appetite started slipping again. I had to take Lorezapam to get through the day at work. I called the GI doctor to ask about my blurred vision and the burning in my stomach. They told me to go off the Remeron and really didn't have an answer for the burning in my stomach (just stay on the prilosec) and call us in a week to let us know how you are doing. When I went off the Remeron I went it to a tailspin. I couldn't sleep. Every time I got myself to dose of I would get a jolt and start shaking. Well to make a long story short by the time I reached morning I was in a deep dark state. My husband called my mom over. They didn't know what to do with me. I kept on saying I couldn't do this anymore and no one can help me. I had everyone scared including myself. I did make a appointment with the med/homeopathic doctor I've been seeing and my husband made appointment that day with counselor for us to talk to. The doctor put me on Kapidex instead of the prilosec for the burning in my stomach. She is worried that the Entocort could possibly be starting to cause a stomach ulcer even though the steroid is suppose to only affect the colon she said it can happen. She told me I might want to go down to 2 capsules and see what happens. She put me on Seraquel a mood stabilizer that I take at night and will help me sleep. Also I'm going to try going on Paxil. I had acupuncture done to try and calm me down. It was one of the longest days of my life but I did make it through it. I did sleep that night.

I had previously set up an appointment with a doctor that specailizes in allergies hoping he could give me a little direction in my diet. I did a skin allergy test for food allergies or sensitivities. Before I did the test he talked to me and seemed very knowledgeable about microscopic colitis and told me about the research showing that MC people can still be sensitive to gluten even though blood tests and biopsies show say differently. This was the first doctor that I've ever heard acknowledge this research. After I was tested we went over the results and sure enough the results showed I was highly sensitive to buck wheat, wheat, and rye flour. It also showed that I was highly sensitive to malt and some other foods that I consume a lot of such as bananas, chocolate, pork, and tea! He told me what he would suggest is due to my history and these test results it would definitely be probably in my best interest to do a gluten free diet. The other foods that I mentioned he said maybe I could eventually experiment with and see how I react to them. I set me up with a dietrician. So here I go I guess that was the boost I needed to go on the GF diet. Hopefully all of this will help and I will start getting better. It just gets so hard. I get so tired of fighting through everyday and sometimes I just get so worn down I stop fighting for awhile until I get a little bit clearer head and realize that is just not an option.

I need to get some GF food in this house! Today I am really limited to what I have to eat!
Wish me luck and hopefully follow this diet will eventually find me in a better place. I'm hoping the other medicines don't cause more problems but I really think I'm in a state right now of high anxiety and depression that I really can't go with out them for now. The only problem is Paxil takes along time to kick in. Wish me luck!

PS. Polly I got the Paleo Diet book yesterday. I haven't had a chance to look at it yet maybe it will be helpful with my new diet.


GLJ

[tex]

That was quite an experience, and I'm sorry to hear that you have been having such a rough time. It's great that you finally found a doctor who actually knows a little about MC, though. That will be very beneficial, in the long run.

Regarding the skin tests: Those tests are of limited value for determining food intolerances, because they are notorious for false positives. The only circumstances where we ever hear of someone being sensitive to foods such as buckwheat, pork, and tea, is in the results of skin tests. It's not impossible that you might be sensitive to one or more of those foods, but I would be very, very surprised, if that turned out to be the case. I have no doubt, though, that you are sensitive to wheat gluten, rye, and barley malt, because those three sensitivities always go together - no exceptions, and all but a handful of us here, are very sensitive to the gluten in those three grains. Banana sensitivity is also very rare, though they are sometimes a problem for some of us, due to the fiber content - but that's not an autoimmune type of sensitivity.

I have already pointed out that you may be having an adverse, (neurological), reaction to the Entocort, but while the Entocort might be causing your blurred vision - it is not causing your gastritis, (burning pain in the stomach). That is probably due to the side effects of microscopic colitis, and when you control the MC, the gastritis will also go away, (unless you have an H. pylori infection, and your doctor should have checked for that, if she is on the ball). Besides, if the Entocort actually were burning an ulcer in your stomach, reducing the dose by a third, would be a very poor way to try to treat it, (IOW, that probably wouldn't make any difference).

There is a good chance that the Remeron may have been causing the blurred vision, and it may have been contributing to the stomach issues, but you can't just stop taking any anti-depressant, "cold turkey". The results will be exactly what you experienced, with panic attacks, restlessness, anxiety attacks, irritability, etc. I can't believe that your doctor told you to do that, without a tapered withdrawal of the drug. If you spoke to a nurse, maybe she didn't check with the doctor, and she just didn't know any better. Anyway, I'm sorry that happened, but I'm glad that you managed to get through that tough period, without anything worse happening.

Thank you for the update. I do wish you the best of luck with your recovery program. The GF diet will allow you to get your life back, if you follow it carefully.

Tex

[teagirl]

I find it interesting that you were told you were intolerant of wheat and buckwheat, as buckwheat isn't related at all to wheat. It's in a category all of its own.

[Syl]

Hi GLJ, I had a food sensitivity test via blood test and it came out that I was bothered by bananas, tea, egg whites, pears, and clams. This was about 15 years ago. Guess I didn't take it too seriously because over the years I have eaten eggs, bananas and drank tea. I now find that if I avoid the eggs and bananas, BMs are firm and I have very little trouble that way. After a bad flare of MC in January and part of February, due in part at least to high anxiety at that time, I gave up the offending foods plus gluten. I was pretty slack about diet for a long time; but after a really bad flare, you do most anything to avoid the "fallout". The only drug I take is occasionally an Imodium, but not very often. I have over the years taken Paxil, Effexor and a couple of others for anxiety/depression plus counseling. I found that the side effects were troublesome and could not stick with any of them. Xanax about puts me to sleep and I almost wiped out in a car because of it..........no more. The right counselor can help tremendously. When MC is acting up I think everybody gets anxious/depressed. Life situations where we have "unresolved issues" really do a number on us. It helps to lead a life with fewer bumps in the road, if possible, yet not become a total couch potato. From reading posts on this board I get the impression that a lot of MCers also suffer from anxiety, depression, social anxiety, some agoraphobia, etc. and are very sensitive to what others think of them. I think we are a very intelligent, sensitive group of folks very impressionable to what the world thinks of them, and trying to live up to what everyone expects of them, and it's hard sometimes. I am now a senior person and getting tougher with age/experience and getting better at protecting myself by leading a life that is "comfortable" for me. Hope you are feeling better, and try not to mix too many drugs at once, as the "cure" can be as troublesome as the disease. We try to put our faith in doctors, etc, but they are with us for such a short time, and we live in our bodies. This board has the most helpful advice IMO Sylvia