New - Dx with Collagenous Colitis -Happy to find this site.

garina · Post by **garina** » Sat Jul 02, 2011 8:44 am

After having read many of these informative posts, I ordered the Panel B from EnteroLab yesterday, which is one that was recommended for Microscopic colitis.

I am so desperate for help. I keep losing weight from so much watery "D", and, even though, I drink Gatorade-low calorie, as it has less suger, and Cup of Soup for sodium, along with V8 juice for potassium and sodium, I am at a loss as to what to eat that might stick with me.

Eating a BRAT diet does not seem to help much, but until I get my test kit and results back from the Lab, I'm stumped.

So far, I've had 4 months of straight watery "D", mysteriously, 2 months of freedom from it, and now for some reason it is back worse than ever.

I would like to find a doctor here that could help, as my GI doctor just gave me a print out from the Mayo Clinic and said there is no cure, and that I could take Imodium if I wanted to shop, etc., to get some relief. He is a very nice person, but was not much help.

I stopped Nexium, but am a bit hesitant to stop my one baby ASA daily. I take Digestive Advantage-Gas for bloating and Align Probiotic, per my PCP.

After reading here, I now know there are treatments available including Pepto Bismol and diet, so I am hopeful.

I am grateful for this site and all the knowledge. Thank you, thank you ....

garina

P.S. I posted before, but I must have done it wrong, because I could never find it anywhere.

sarkin · Post by **sarkin** » Sat Jul 02, 2011 9:21 am

Welcome, Garina.

I also some time back had a mysterious spell of freedom from MC, which is of course wonderful, but makes it all the more mysterious when the D comes back in force. I have no idea why I got a lucky break, and am not sure why the MC returned at that particular time (though I have some theories).

I would guess there was something in your BRAT diet that didn't agree with you - for me, it was applesauce. It seemed so benign and safe, and I'm still not sure whether my system was just so sensitive that the fiber bothered me, or maybe I reacted to the one ingredient other than apples (I think it was ascorbic acid, or maybe citric acid). I can tolerate it now. I also had trouble with almost all sweeteners in the beginning - didn't matter how 'natural' or organic.

I bet there are ingredients in that Digestive Advantage formula that could be irritating (colorings, etc.). For me, gas/bloating is definitely a sign that I've eaten something that doesn't work - hopefully you'll not need it once you get your food sensitivities figured out. You might try a couple of days without it, and a very limited diet (I do know how hard that is - maybe with the long weekend, you can do a little planning, as opposed to trying to squeeze it into a busy week). I have had trouble with mystery ingredients, even when I thought I was being careful. I found that at least two of the supplements I had been taking no longer work for me, and have found a different B-vitamin that I tolerate well (still looking for a new CoQ10). I have also been a long-time user of pro-biotics, but I think when I was really sick, they just didn't have a chance to do any good. (And that's another one where you have to be careful about ingredients - many have dairy or soy.)

I hope your Enterolab results are enlightening, and you start to feel better soon. (And if you try the Pepto Bismol, I hope it works, and you tolerate it well.)

And again, welcome!

Sara

Post by **tex** » Sat Jul 02, 2011 10:52 am

Hi Garina,

Welcome to the board. You're off to a good start, by ordering that test kit. That will save you a lot of time and worry, in the long term, and you'll be able to fine tune your diet much faster.

Most commercial soups, (including Lipton's dry mixes), contain gluten and/or dairy products, so most of us react to them. Homemade chicken soup is a much safer, (and more nutritious), option. V8 juice contains natural flavors, (which often/usually contains a form of MSG), and many/most of us have problems with the ascorbic acid and citric acid that it contains, until after our gut heals.

Your doctor was correct about there being no cure for MC, but he was obviously unaware that there are reliable, (and safe), ways to control the symptoms. Hard work and determination is required, to remove all the problem foods from our diet, and keep them out, but we can certainly get our life back, if we are willing to take the necessary steps, and persevere.

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

Tex (Wayne)

garina · Post by **garina** » Sat Jul 02, 2011 11:13 am

Thank you for writing. Oh gosh, Sara, applesauce! It is one of my favorites. But, it may be one I cannot tolerate. It's really hard to know what ingredients are in foods. Applesauce seems so benign. I will check out all my supplements to be sure. What a journey this will be!

I didn't know Cup of Soup had gluten. It would be great if the mfg would let us know what hidden ingredients are in foods. And, V8 is something I have every AM with breakfast. I will have to rethink that.

I'm glad to hear we can get our life back, and I am willing to do whatever is necessary to make that happen.

Many thanks.

garina

Gloria · Post by **Gloria** » Sat Jul 02, 2011 11:52 am

Welcome, Garina!!

It's unfortunate, but not unusual, that your GI didn't provide any suggestions other than Imodium for your MC. He obviously realizes that a diagnosis of MC is the updated diagnosis for IBS - and he probably gave you the same advice he used to give his IBS patients. So sad that he gave you such little hope.

If you've been reading the messages here, you know that there is hope, as many members can testify. You seem willing to make the changes necessary to get your life back. Ordering the Enterolab testing is an excellent start.

We look forward to getting to know you better and are standing by to help you with your MC management.

Gloria

Post by **tex** » Sat Jul 02, 2011 1:33 pm

Garina,

It's necessary to read the label, carefully, on every processed food we buy. Not every flavor of Cup-A-Soup contains gluten, but 4 out of 6 do. As you can see from the ingredient lists copied below, the first three, and the last one, contain wheat flour. The two that don't contain gluten, contain dairy products, (and soy), and most of us react to such products in virtually the same way that we react to gluten.

Beef Noodle Lipton Cup-a-Soup Ingredients: Enriched Egg Noodles [Wheat Flour, Eggs, Niacin, Iron, Thiamine Mononitrate, Riboflavin, Folic Acid], Maltodextrin, Modified Potato Starch, Salt, Autolyzed Yeast Extract, Partially Hydrogenated Soybean Oil, Onion Powder, Caramel Color, Sugar, Silicon Dioxide Used To Prevent Caking, Disodium Inosinate, Disodium Guanylate, Natural Flavors, Garlic Powder, Beef Extract, Parsley Flakes. May Contain Milk.

Hearty Chicken Noodle Lipton Cup-A-Soup Ingredients: Enriched Egg Noodles [Wheat Flour, Eggs, Niacin, Iron, Thiamine Mononitrate, Riboflavin, Folic Acid], Maltodextrin, Modified Potato Starch, Salt, Chicken Meat*, Chicken Fat, Autolyzed Yeast Extract, Onion Powder, Silicon Dioxide (Prevents Caking), Turmeric, Chicken Broth*, Paprika, Parsley*, Garlic Powder, Natural Flavors, Egg Yolk*, Whey, Spices, Nonfat Milk, Partially Hydrogenated Soybean Oil. *Dehydrated

Chicken Noodle Lipton Cup-A-Soup Ingredients: Enriched Egg Noodles [Wheat Flour, Eggs, Niacin, Iron, Thiamine Mononitrate, Riboflavin, Folic Acid], Maltodextrin, Modified Potato Starch, Salt, White Chicken Meat*, Chicken Meat*, Chicken Fat, Autolyzed Yeast Extract, Onion Powder, Carrots*, Chicken Broth*, Silicon Dioxide (Prevents Caking), Turmeric, Parsley*, Paprika, Egg Yolk*, Natural Flavors, Garlic Powder, Whey, Nonfat Milk, Spices, Partially Hydrogenated Soybean Oil. *Dehydrated

Cream of Chicken Lipton Cup-A-Soup Ingredients: Maltodextrin, Modified Potato Starch, Whey (From Milk), Salt, Partially Hydrogenated Soybean Oil, Sugar, Autolyzed Yeast Extract, Guar Gum, Silicon Dioxide Used To Prevent Caking, Onion Powder, Sodium Caseinate, Soybean Lecithin, Dehydrated Chicken Broth, Turmeric, Parsley Flakes, Dehydrated Chicken, Natural Flavors, Spices, Oleoresin Paprika (Color), Caramel Color.

Tomato Lipton Cup-A-Soup Ingredients: Whey (From Milk), Tomato Powder, Sugar, Potato Starch, Maltodextrin, Salt, Autolyzed Yeast Extract, Cream, Partially Hydrogenated Soybean Oil, Onion Powder, Garlic Powder, Dextrin, Corn Syrup Solids, Natural Flavors, Soybean Lecithin, Oleoresin Paprika (Color)

Spring Vegetable Lipton Cup-A-Soup Ingredients: Dehydrated Vegetables (Carrots, Green Peas, Tomatoes), Maltodextrin, Salt, Autolyzed Yeast Extract, Sugar, Partially Hydrogenated Soybean Oil, Enriched Egg Noodles [Wheat Flour, Egg Yolks, Niacin, Ferrous Sulfate, Thiamine Mononitrate, Riboflavin, Folic Acid], Garlic Powder, Onion Powder, Guar Gum, Caramel Color, Citric Acid, Spice, Natural Flavor. May Contain Milk

http://www.discountcoffee.com/lipton-soup.htm

Note that you have to click on the "Nutritional Info" tab, to see the ingredient lists.

Good luck with figuring out your new diet.

Tex

garina · Post by **garina** » Sat Jul 02, 2011 3:31 pm

Oh, my goodness, Tex, even my Cup of Soup, which has given me extra sodium after a bathroom episode, is a problem. Thanks for posting that for me. Yes, I will have to watch all the ingredients of what I thought were safe foods. This is going to be hard, but I will do it, because I look forward to the outcome of normal bathroom issues.

Gloria, I think you're right about my GI doc, and I wonder if they think MC is too rare to spend time on. I don't know.

I am looking for a doctor or nutritionist that can be of help where I live, but so far haven't found anyone. I have much to do, but I'm optimistic for better bathroom days.

garina

MBombardier · Post by **MBombardier** » Sat Jul 02, 2011 4:26 pm

Welcome, Garina! Yes, constant vigilance is the name of game. For example, the other day I fixed a big pot of my favorite Stash red raspberry tea. Just before pouring myself a glass, I checked the ingredients, as I've learned to do with everything I consume. This is what the package said: "100% natural ingredients. Hibiscus flowers, orange peel, lemongrass, rosehips, raspberry flavor, licorice powder, and citric acid. Contains soy." WHAT??

Since I react to soy as badly as I do gluten, my children happily finished off the tea.

garina · Post by **garina** » Sat Jul 02, 2011 6:26 pm

Marliss,

Bummer, because that tea sounds so good. And, to think this could be for life, unless a miracle treatment comes along.

BTW, your little one is precious.

garina

Gabby · Post by **Gabby** » Sat Jul 02, 2011 7:26 pm

Hi garina

Welcome to the board! I'm was just thinking that if you shared you location there may be someone here who could refer you to a better doctor. You never know.

Good luck and hang in there.

Gabby

garina · Post by **garina** » Sat Jul 02, 2011 7:55 pm

Hi Gabby,

Good idea.

I live in the Florida Panhandle, between Pensacola and Panama City. At any of those places would be good for me. Traveling is not a problem. We do stop on the road whenever necessary, usually at a McDonald's if needed for bathroom breaks, and the bonus is their great coffee. But, I can't do their food.

Thank you.

garina

Gabby · Post by **Gabby** » Sat Jul 02, 2011 8:05 pm

Hi garina,

yeah I can do McD's either. I used to get an Egg McMuffin once in a while and just eat the egg and ham. Now, since I took the Enterolab tests, I am avoiding eggs for a while to see how I do. I tested high for gluten, eggs and soy.

Well let's hope that someone in your area sees your post and has a referal for you.

Gabby

Maynard · Post by **Maynard** » Sun Jul 03, 2011 5:32 am

Gloria wrote:
He obviously realizes that a diagnosis of MC is the updated diagnosis for IBS - and he probably gave you the same advice he used to give his IBS patients.

Gloria

Hi, Have been reading for some time now, have been sick a long time but only recently Dx with MLC. Doing better on the Entocort. Can you elaborate on "updated Dx for IBS"? My GI guy is good but each day I have more questions than answers.

Thank you all for sharing, for letting me know I'm not alone!

Gloria · Post by **Gloria** » Sun Jul 03, 2011 7:36 am

Hi Maynard,

What I meant was that GIs used to routinely give a diagnosis of IBS when they couldn't find any explanation for the gastro symptoms that patients had. Because they couldn't explain what it was, they didn't give a treatment for it. Many members here had been given the diagnosis of IBS by a GI and had been told they should "live with it."

Now, however, any GI worth his or her salt, will do a biopsy when a patient presents with these same symptoms. Unfortunately, many still consider it an "elderly woman's disease" and only do a colonoscopy/biopsy if the patient is over 50 years old. They correctly give the diagnosis of MC, if the biopsy shows it, but many still don't know how to treat MC, other than prescribe a steroid or a Pepto-Bismol routine. Some also prescribe non-steroidal medications. Very, very few are aware of the diet connection to MC.

Even fewer will do a stain on the biopsy to determine if there are excess mast cells. Excess mast cells would indicate that the patient not only has MC, but also mastocytic enterocolitis. That disease is greatly underestimated for the same reason that MC is - if the proper testing isn't done, the proper disease will not be diagnosed. Mastocytic enterocolitis (there are newer, similar names for it) requires even more vigilant monitoring of the diet and necessitates eliminating foods high in histamines.

Most GIs are still in the dark ages when it comes to diagnosing and treating MC and mastocytic enterocolitis. They only accept diagnosis and treatment methods which have been published in medical journals. Since changing one's diet isn't typically funded by pharmaceuticals, and an acceptable diet which works for all is rare, few studies on dietary treatments are published in medical journals. GIs will probably never routinely recommend dietary changes as a treatment for MC or mastocytic enterocolitis. Drugs are easier to prescribe and monitor.

Gloria

Post by **tex** » Sun Jul 03, 2011 8:40 am

Hi Maynard,

Welcome to the board. I totally agree with Gloria, and she wrote an excellent assessment of the somewhat unique circumstances that surround MC. For decades, doctors considered it to be a rare disease, so medical schools never bothered to teach many details about it, consequently, most doctors are slow to understand the disease, and even slower to learn how to properly treat it. Since so many of them have rather poor success in treating the disease, (as soon as they discontinue a corticosteroid treatment, the patient relapses), they tend to become somewhat frustrated and intimidated by the disease, and some of them blame the patient, when a prescribed treatment doesn't relieve the symptoms.

GI docs are familiar with what they call "IBS", (even though "IBS" does not actually exist), so since the symptoms of "IBS" are similar to the symptoms of MC, they often treat MC as though it were "IBS", which doesn't work worth a hoot, of course.

The fact that pharmaceutical reps pretty much provide the front line education for doctors these days, as far as treatments are concerned, makes it even more difficult for doctors to understand and treat the disease, since, (as Gloria pointed out), Big Pharma is not going to recommend non-drug treatment methods.

In doctor-speak, a diagnosis of "IBS" literally means "I don't have the foggiest idea what's wrong with you, so I'll diagnose you with "IBS", (I be stymied). The difference between "IBS" and MC is usually a set of properly-collected biopsy samples.

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

Tex