This might be what I have

mbeezie · Post by **mbeezie** » Wed Jun 10, 2009 10:00 pm

First of all, thank you so much for this informative site. I haven't been diagnosed yet, but it sounds like this is what I have been dealing with for the last 18 months. I see my GI next week - on my last visit he thought maybe it was MC but he wanted to wait a bit since I had already started eliminating foods and was starting to feel a bit better.

Here's my story: On Halloween 2007 I had a flu shot and had an immediate reaction that landed me in the ER (blood pressure 220/180). After that event I developed several symptoms including bouts of intense tachycardia, headaches, peripheral neuropathy, tremors and loose stools. This lasted 2 months. My medical bills probably reached $30 (luckily I have good insurance) but no diagnosis. After 2 months my symptoms subsided, except for the neuropathy, which drove me crazy. A few months later I was having horrible knee pains and my PCP told me to take Aleve, which I had never taken. After a few days on Aleve, the post flu-shot symptoms returned with a vengeance and lasted a few weeks. Again my symptoms subsided except for the neuropathy, but within a month I started to notice a change in my stools . . . larger and a bit more urgent, but nothing terribly concerning. I did not connect the neurological symptoms with the bowel symptoms - I thought 2 separate things were going on. The GI symptoms gradually got worse and I was going 4-5 times daily. I am a dietitian and put myself on an elimination diet and realized I was reacting to gluten. I got tested for celiac and was negative but stayed on the GF diet because it seemed to help a bit. Interestingly, my leg pains and neuropathy went away. I knew that people who were gluten sensitive also often reacted to dairy, so I also got off dairy and my headaches went away. I also had some tests done by Enterolab and it confirmed the gluten and dairy intolerance. Because I was off dairy I started used more soy and ended up reacting very badly to soy (and peanuts and other legumes as well), so I am now off soy. Overall I feel much better, but still have not isolated all of my triggers for frequent loose stools. I suspect it may be corn and fruits but I've been dragging my heels eliminating these - love fruit this time of year and being a good Texan, I love to go out for Mexican food and will miss my corn tortillas and tamales. My husband and son also tested positive for gluten and dairy, so we are all on the GF/CF diet, except mine is a bit more restricted with the soy and legumes. All in all, the diet is fine - very healthy and manageable, but I am getting frustrated - each time I eliminate something and think I have figured it out, the GI symptoms return. I am sure I will have a colonoscopy soon and get a diagnosis.

At the end of this month we are going to Dr. Fine's Intestinal Health camp. My son is handling the diet restrictions very well and has a positive attitude (we all do), but I wanted him to get support from other kids going through this. So, hopefully I will have a diagnosis by then - I plan to pick Dr. Fine's brain while we are there:)

Thanks again for the informative site - it has been very helpful.

Mary Beth

Post by **tex** » Wed Jun 10, 2009 10:37 pm

Mary Beth,

Welcome to our internet family, and thank you for sharing your experiences. You definitely seem to be on top of the situation, but as you have noticed, tweaking out the last of the intolerances from your diet can be very frustrating, in some cases. Here are a couple of things to consider, in case you haven't already experimented with them: Unlike IBS, fiber is a problem with MC, and for most of us, it must be minimized, which makes most fruit a problem, and also certain vegetables. Fruit can be a double whammy, since many of us seem to be sensitive to sorbitol, especially while our gut is still healing, and therefore super sensitive to certain "irritating" foods. Most of us can tolerate certain vegetables, provided they are well cooked, (overcooked, really). Most forms of sugar bother many of us, while we are healing, (some are especially sensitive to fructose), and artificial sweeteners, (especially aspertame), are off limits for many/most of us. The sugar alcohols are also off limits for most of us.

Many of these foods seem to be "irritants", and we're not really intolerant of them. Therefore, many of them can be added back into the diet, after the gut completes the healing cycle, (which can take a year or more). Obviously, for example, we are not really intolerant of any sugars, (since only proteins can trigger allergic/intolerance reactions. I suspect that In most cases, damage to the small intestine causes enzyme deficiencies, which leads to the increasing problems with sugars in the diet. Lactase, of course, is the first enzyme to go, and the last to return. For most of us, that's a moot point, of course, since we're casein intolerant, anyway. I realize that the folks in the white coats refer to a lactase deficiency as "lactose intolerance", but the fact of the matter is that lactase deficiency does not trigger an autoimmune reaction - it merely results in undigested lactose passing on through to the colon, where it ferments, causing gas and discomfort, as it is "digested" by the bacteria there.

That was a very scary reaction to the flu shot. After many years of abstention, I just recently caved in, and told my doctor that I would try the flu shot, for the first time, this fall. You've convinced me to reconsider that decision.

Thanks for sharing, and again, welcome aboard.

Tex (Wayne)

mbeezie · Post by **mbeezie** » Thu Jun 11, 2009 5:58 am

Tex,

Thanks for your quick response. Your dedication to this site is obvious.

I have already started to eliminate certain fruits and vegetables for that very reason - I just find that part hard - nothing thrills me more this time of year than going to the farmer's market. A dietitian friend of mine from Australia directed me to some research being done there on the FODMAP diet, which is intended to help with functional diarrhea and eliminates many of the things you mentioned (if you Google FODMAP you will find lots of info) - this can serve as a guide in helping people know what to try to eliminate, especially when they are new to this. Of course everyone's gut is different and I know the list of problem foods can vary greatly.

Yes, avoid the flu shot. Clearly I am not the first person to have an autoimmune disease triggered by a vaccine. I also now firmly believe there is a link between vaccines and autism - those babies often respond to a GF/CF diet, so there is something about vaccines, fragile immune systems and gut response that don't mix well.

Take care,

Mary Beth

starfire · Post by **starfire** » Thu Jun 11, 2009 6:39 am

Hi Mary Beth and Welcome, of course.

You certainly do seem to have a good handle on your disease. I'm so sorry you had to go so long without a definite diagnosis but you sure did your research and figured out a lot for yourself. I applaude you.

Looking forward to more of your posts.

Shirley

barbaranoela · Post by **barbaranoela** » Thu Jun 11, 2009 8:42 am

MaryBeth----and U surely are taking things into your HANDS-----GOOD for U---and I wish your son much success in Dr. Fine;s health camp ---I didnt know there was such a place~~~~

Do keep us updated cus I know that I will be eagerly waiting to read more of your posts~~~~and how successful things go--

Fondly--
Barbara

Post by **tex** » Thu Jun 11, 2009 9:15 am

Mary Beth,

Thanks a million for the tip on FODMAP. You're right, that concept covers many/most of the secondary food issues that many of us have to deal with. I was unaware of that project, and as you suggest, it should certainly be suitable to serve as a valuable guide for many of our members.

Pat, if you're reading this, I'm sure you're already familiar with most of this, but you might find some sort of "closure" in this concept, and this might help to organize your thoughts - here's a good place to start reading:

http://74.125.93.132/search?q=cache:iJo ... clnk&gl=us

Here's an abbreviated version of the diet:

http://www.healthhype.com/fodmap-diet-f ... d-gas.html

Many thanks,
Tex

Gloria · Post by **Gloria** » Thu Jun 11, 2009 10:37 pm

Mary Beth,
Welcome to the board! I'm impressed with your grasp of what is necessary to manage this disease. It sounds like you are on the right track and have done a lot of research. I just read the FODMAP information and found it fascinating.

I have struggled with this disease for 2 1/2 years and am still unable to manage it exclusively by diet even after eliminating many foods. I presently am taking 3 mg. Entocort per day after a recent failed second attempt to manage without it. I was down to just one pill every three days, but within five weeks without taking any, all of my symptoms returned as if I hadn't eliminated any foods at all.

I am beginning to suspect that fruit is a problem for me, but I haven't been sure which fruit. The FODMAP information is helpful and seems that it would be worthwhile to try it to see if it makes a difference. Thank you for sharing it.

Gloria

mbeezie · Post by **mbeezie** » Fri Jun 12, 2009 5:32 am

Give FODMAP a try - I have been more seriously following it the last few days and it seems to help. I am able to tolerate some sweets because there is a balance of fructose/glucose, but fruits with a net excess of fructose are a problem - I need to contact my Australian dietitian friend and find out if more extensive lists are available. That info can be easily looked up but it would be nice to have a list to refer to.

Good luck!

Mary Beth

Pat · Post by **Pat** » Sun Jun 14, 2009 1:22 pm

We've been out of town and just read this thread. Tex, yes, I have read this before ( Thanks for reminding me of it). I have followed this diet and it does help immensely with the gas, bloating, and muscle aches, but not the D for me anyway.

I am one of the unfortunate ones that cannot tolerate even the low fructose fruits. Even dextrose seems to be a problem. I have tried to follow the people with Hereditary Fructose Intolerance but they seem to be able to handle dextrose quite well and most handle wheat and dairy. I feel most of the time that I really don't fit in anywhere. I am doing just fair following the diet and taking the Entocort 9mg. No normans. The Entocort seems to help me to not have accidents, doesn't solidify. Being out of town is hard so I ate some things I shouldn't have and paid dearly. Sometimes my decision was do I want to starve or have more gas and bloating later. Gas X and Pepto came in handy. I have suspected potatoes before and had a day of potato overload and that was a disaster. Now that I am home things will settle down.

Pat

P.S. Welcome Mary Beth!