New to the site...looking for some feeback

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DanaL
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New to the site...looking for some feeback

Post by DanaL »

Hello all.
I am new to this site,but unfortunately not new to MC. I have been suffering for over 2 years and counting. I went through numerous tests and alot of frustration but was finally diagnosed with Microscopic Colitis. My doctor put me on Pentasa and I severely changed my diet. I lost 30 lbs and went down to 105lbs.

I am only 28 years old and loved to go out and have fun but since my symptoms started alot of that has changed. At times I am afraid to leave the house and dread going out to dinner or social events.

I responded well to the pentasa and cut out coffee, fried food, alcohol and dairy. The Pentasa and the change in my diet was working and I was feeling better and was back to living my life.

I was good for about a half a year and started incorporating some of the eliminated foods back into my diet. Unfortunately the symptoms have recently come back. This is very depressing and discouraging to me.
I have since went back to not eating the foods that I thought were triggers but still dont feel 100%.

:???: I have never heard of the Entrolab testing. I am wondering if that is something that I should bring up in my next visit to my doctor.

I have to say that in looking on the site that I am very surprised to see how many of you are on GF diets. This is something that I did not think was necessary for me because i do not have Celiac disease, but is now something that I think is worth a try.

I was discussing it with my family and I think its now time to try a diferent approach to this disease. I am going to get tested for food allergies and think about going to a nutrionist.
If anyone has any other suggestions for me I would greatly appreciated it.

Thanks!!
Dana L
JLH
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Post by JLH »

:welcome: Dana, you have come to the best place in the world for information and support.

Yes, we recommend EnteroLab if you can afford it. If not an elimination diet will work, too.

Most, but not all of us, are intolerant of gluten. You can see our intolerances under our avatars. Gluten, casein (the protein in milk) and soy are our biggest problems.

BTW, I had allergy skin prick tests and they didn't show a thing!
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
DanaL
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Post by DanaL »

Hi Joan.
Thank you for your reply!

I am looking into the entrolab testing and will be discussing it with my family.

It is so interesting to me to find out about the gluten intolerence and not to sound stupid but its a little uplifting! I mean, now I know that there is something else I can try!

Thank you for letting me know about the skin prick test...now I know I shouldnt waste my time with it!
Dana L
JLH
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Post by JLH »

Your result might be different than mine, don't forget. (BTW, my Dad was an allergist.) I'd go with EL first.

Don't bother discussing EL with your doctor, he or she will poo poo it. (Pun intended.) :roll:

Read as much here as you can and on the EnteroLab site. It will be overwhelming, I know. Ask any questions at all.
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 »

Hey Dana,

Welcome to the site. We're always sorry to hear about another person with our disease but you will find this a great source of information here.

I have had skin prick tests and blood tests, but nothing showed me the way like Entrolabs. I will admit they are expensive and a lot of insurance companies don't cover the tests. If you have insurance, check with them before your next Dr. visit. That way, if some of the cost is covered the Dr. can write you a lab request.

If you can't afford them now, I would strongly recommend you do the elimination diet. While you do that, keep a detailed food diary. That may help you pinpoint what is affecting (or not affecting) you quicker. I know some members on the board have had good success with a diary and others have not. I found it beneficial to me and would take it to my Dr. to show how I was progressing from appointment to appointment.

Please know we are all here to help you on this journey.

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

I just noticed that since I am a NY resident that I will not be able to do the EntroLab testing! I will have to figure out another way to get around that.

If all else fails I would be willing to try the elimination diet.

I do have a question in regards to the gluten free diet...my normal breakfast consists of either ritz crackers or a nutragrain bar, lunch is a fresh turkey sandwhich on a roll with mustard and lettuce and dinner varies.
Does anyone have any suggestions for gluten free substitutes to what I am eating now?
Dana L
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Post by JLH »

http://www.webmd.com/diet/slideshow-gluten-free-diet

There is such a thing as gluten free bread but the best use of it is for a door stop! :lol:

I eat Edwards Rice Crackers a lot. I am going to get a bread machine and make my own bread. I eat frozen waffles and French toast from the health food store. (Van's brand has soy but you may be one of the lucky ones and not have an intolerance to it.) They also have bars like sunbutter. There is GF cereal, hot and cold. Some PP use other kinds of milk.

Also, check your vitamins and supplements for gluten etc.

Did you see all the recipes in Dee's Kitchen?
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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adelie
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Post by adelie »

Hi Dana,

Welcome! MC can certainly put the damper on a social life, especially when it comes to meeting with friends for lunch or dinner and travel. Eating out is a challenge. Restaurants that aren't well experienced with special diets often inadvertantly cross contaminate or use something that you react to. A couple of my favorite recent accessory additions have been the Playtex Fridge-to-go (2-bottle size) and 3-oz premi baby bottles (TSA approved for air travel and they don't leak - I cut the nipples off and just leave the ring of the nipple for the seal). Family Dollar is the only place I've found the 3-oz bottles. Most places have 3.5 oz bottles which are over the TSA liquids limit. The Fridge-to-go is a tiny cooler with thin integrated freezer panels that keep contents refrigerator cold for 8 hours. It's in the baby department. I haven't tried air travel with it yet, but I've read on several boards that TSA is generally allowing them with carry-on. It has a couple of external pockets and a shoulder strap, so it's often my "purse".

Anyway, when I leave for work in the morning or go out with friends, I grab my Fridge-to-go stocked with a little bottle of unsweetened almond milk for coffee/tea or make a quick sauce (i.e. add a pre-mixed garlic powder, onion powder and xanthan gum), a small assortment of diet approved sauces or seasonings and a snack or two. I've found a vast majority of the time when I've had problems with something I ordered from a restaurant, it's in the sauce or seasoning. Now I order something completely unseasoned and season it myself if I want seasoning. If I have a bad feeling about a restaurant, I'll get a drink and have my snack. Most restaurants will microwave my snack if needed, but make sure to ask they keep it in your container. Who knows what that kitchen spoon was in last. I've found it easier in dealing with run of the mill restaurants to say that I'm allergic, not intolerant or sensitive. Allergic tends to get the attention of folks - this is serious business. But there are still a lot of people out there who will hear intolerant or sensitive and respond with - well, a little won't kill her. Even those with the best of intentions might not read the label close enough if you say intolerant or sensitive, but when I say allergy, I quite often get the bottles of all the ingredients brought to me for my approval if a restaurant wants to make the effort. The same approach applies to friends and relatives too. I either bring my own or I'm in the kitchen reading every label and scooping out my plate early on in the preparation. You want to eat what they cooked because they made so much effort, but oops! they used that brand?! Oh, no!

Having a little something with you to eat, not just drink seems to make a big difference in socializing. It never bugged me when there was nothing at a restaurant for me to eat (I lived in southern Mississippi/Louisiana for 8 years where even the pickles are breaded and fried, so I was used to it), but it bugged the people with me to no end. They'd start the "I'm sorry" and other pitty party banter. Now that I always have something that can sit on a spoon or fork, I don't get the pitty party, but rather a short "What else have you got in there?" or "What's the flavor of the day?" Everyone chows down and the discussion moves onto other topics.

There are going to be days where venturing too far away from the bathroom just isn't an option, but on those good days, make a small care package, grab those brown knickers, get the end seat closest to the bathroom and go for it! And if someone really wants to make something for you, tell them you want to make it with them the first few times, then start your personal recipe box with them - including a source list with approved brand names/products and who carries it if it's a specialty item in your area. I'm slowly getting my Mom well versed enough to cook for me when I visit. She's diabetic and at first I'd come up and she'd say, "The pumpkin pie is made with Splenda, so you can eat it, right?" No, Mom, that means you can eat it. That cup of whole milk will have me living in your bathroom the next few days even if I avoid the crust.

Karen
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Post by shekoe »

So sorry to hear of your struggles with MC. Here are a few suggestions that have helped me go gluten free: 1) If you have a Whole Foods store near you, their frozen English muffins, bagels and peanut butter cookies are decent. If you have a Trader Joe's, their frozen waffles and pancakes are quite good. Also, Google "gluten-free food" and you will find several sites from which you can order. Usually, these sites also provide ratings from their customers. An excellent gluten-free cracker I recently found is by a company called "Crunchmaster." They, too, have a site from which you can purchase their products. I use the crackers with soup, salads and with hummus and guacamole. If you are going out to lunch or dinner, call the restaurant in advance, and ask what gluten-free items they have. Most will try to provide unbreaded, grilled meat, poultry or fish. Hope these suggestions help you on the road to recovery. Good Luck! Sheila
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tex
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Post by tex »

Hi Dana,

Welcome to our internet family. Sorry to hear that your symptoms have returned, but that seems to be a somewhat common experience with this disease. It seems that the immune system tends to concentrate on the major perceived "invader", and once that food is removed from the diet, and the antibodies diminish to below the threshold for a reaction, then the immune system "notices" the next most significant "allergen", and launches a reaction against it, and the cycle starts over. Most of us who are intolerant of casein, (the primary protein in all dairy products, as Joan mentioned), are also intolerant of gluten, and about half of us are intolerant of soy. Some of us are also intolerant of other items, such as egg whites, corn, etc., but these problems are less common.

As Joan mentioned, most GI docs are unaware of any connection between food intolerances and IBDs, and they will argue that such a cause and effect is not possible. Unfortunately, they haven't done their homework, and they make that assumption, simply because no one has ever done the research to verify the connection, (except for Dr. Fine, the founder of Enterolab, who has MC himself, but since his research is still largely unpublished, it is not an "official" part of the accepted medical database), so most doctors are ignorant of it.

A few members here do have celiac disese, (in addition to MC), but they are the only ones who test positive to the classic celiac blood tests. IOW, many/most of us are just as gluten-sensitive as a typical celiac, but unless the disease, (gluten-sensitive enteropathy), has progressed sufficiently, so that it has caused extensive damage to the villi of the small intestine, the classic celiac blood tests will always show negative results. The stool tests offered by Enerolab are far more sensitive than the blood tests, (actually, several orders of magnitude more sensitive). In fact, they are so sensitive that they can accurately detect gluten antibodies in stool samples, over a year after gluten has been totally withdrawn from the diet. Even for someone with fully-developed celiac disease, the blood tests can reliably detect gluten antibodies for only up to about 2 or 3 weeks after gluten has been withdrawn from the diet. There's simply no comparison, for sensitivity, reliability, and accuracy.

Dee's Kitchen, (as Joan mentioned), offers hundreds of gourmet class recipes, free of gluten, dairy, and soy. In case you haven't located it, here's a link:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

I'd be willing to bet that the odds are pretty good, that you could eliminate all sources of gluten from your diet, (in addition to dairy), and get your life back, within a few months, (possibly within a few weeks, if you're lucky). Of course, we are all different, so it might take longer. As Jan mentioned, keeping a detailed food dairy, along with info on how you feel, bowel movements, (BMs), etc., can be a valuable reference, especially if there are additional foods that may be bothering you.

I was thinking that someone here had found a workaround for the New York state shipping restrictions, but I can't remember what it was. You might call the lab, to see if that restriction still applies - they are somewhat slow to update their website on details such as that, sometimes. Members from countries all over the world, have ordered tests from Enterolab, so it seems kind of ridiculous that New York State should prohibit them. :roll:

Again, welcome aboard, and please don't hesitate to ask anything that comes to mind. MC can be a very debilitating, and life-altering disease, and collectively, we've learned a lot of ways to make life easier, while going through the process of bringing the disease into remission.

Tex (Wayne)
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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mbeezie
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Post by mbeezie »

Hi Dana,

Welcome! I agree you should give the GF diet a try. I recommend picking up a copy of the Gluten Free Bible by Jax Lowell Peters. She covers everything in this book from shopping, to dining out to travelling. Once you get the hang of it it's really not that difficult.

Hope you fell better soon.

Mary Beth
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Post by Rosie »

Welcome, Dana. You've come to a place that provides real hope to getting your life back.

Like you I started out being dairy intolerant, and didn't seem to have a problem with gluten at the start. But I got tested at Enterolab, and found out I was gluten sensitive. So even though gluten didn't give me diarrhea, I removed it from my diet. To my amazement, a number of other health issues improved dramatically, most obviously my asthma. In addition my muscle cramps disappeared and I had a lot more energy. So just remember that digestive problems aren't the only symptoms of gluten intolerance, as has been shown numerous times here on the forum and in the scientific literature.

I've been able to control my MC just with diet, and now participate in any activity I want, a far cry from being fairly housebound with constant diarrhea just 6 months ago! A big help was getting the full testing at Enterolab, as I discovered that I am also soy and yeast intolerant, and was able to heal more quickly knowing I needed to eliminate them from my diet.

Rosie
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ant
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Post by ant »

Hi Dana,

:welcome: from Hong Kong. One very simple little trick to help socializing is to have a bag of nuts with you (plain - hazelnut, almonds, walnuts - not roasted and not peanuts that are actually legumes). When you are having a drink you can bring them out to snack on, rather than risk the bar-snacks.

Wishing you all the best, Ant
DanaL
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Post by DanaL »

Thank you all for your warm welcomes and wonderful suggestions!

I think I might have found a way around the NY restrictions for the testing and I am taking it into serious consideration.

I am sure I will have some more questions and I look forward to your feedback!!
Dana L
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Post by suzil »

Hi Dana-

We live in NY also. In order to have my daughter's Enterolab work done, we had them ship the kit to a friend in another state. He then forwarded it here & we sent it out.

However you do it, be sure to save the original box, as it is the one you ship the sample back to them in. Not knowing that, I had to use a lot of tape to put it back together!! :lol:
Sue
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