new to site --- possible MC

[LauraJ]

Hi there!
I would like to introduce myself to the board! This seems like a great place---CanadianKaren suggested I check it out.

My name is Laura and I am a 25 year old female hoping for some bits of advice from all of you wonderful people. I am a Celiac (dx at age 23) that recently began having troubles. I am a super-super-super sensitive Celiac....I get extremely sick from the tiniest bits of cross-contamination. About 99% of the time, I make my own food because I have gotten sick at just about every restaurant there is. Life was going well gluten free until the past few months. Started having serious "D", on days when I know I didn't eat any gluten (plus, I didn't get all of my many Celiac symptoms). I thought it was strange, because if I am 110% gluten free, I am as healthy as can be. It started increasing to a couple times a week. I am new to my area so I found a new GI. He ran the Celiac panel, thyroid tests, and some other basic tests....all came back negative. Over the coming weeks, it went from a couple times a week to a couple of times a day, with horrible stomach pains, general feelings of yuckiness, sometimes nausea,....starting losing weight, feeling weak, etc. Surviving on Immodium. Had a small bowel x-ray (drink the barium and they take pictures----yuck!) Came back negative.

Got an emergency app't with his physician's assistant....who LUCKILY ended up being a Celiac!!! And what a great lady. I had read Dr. Green's book on Celiac and talked to Canadian Karen and I asked her if I could be tested for MC and bacterial overgrowth. She agreed and also suggested parasite testing. My parasite testing came back negative. I am scheduled for a colonoscopy for him to take biopsies of my colon for MC and he is also going to go a bit further up to check for Crohn's Disease. I am currently taking the generic drug of Bentyl four times a day to control the incessant D. However, if I forget to take it----life is bad! Only problem now is that I am not really going to the bathroom unless whatever I ate was just too much for the Bentyl.

I have read some of the med articles that have been posted to this site, trying to learn about MC. My husband and I are both going "wow, this sounds exactly like you." I am asking yall for any advice or tidbits you can pass on....Questions for me to ask the dr.....recommendations....I was sick for a solid 10 months before my Celiac was dx. Had never heard of Celiac and at that time, wholly trusted the medical establishment. Now I know I need to be more pro-active in my health and not accept the dx of the standard "IBS." So, I wanted to introduce myself and ask for any tidbits that I need to know at this point, or things you wish you knew to ask the dr., etc.

Thanks ----
Laura

[Mars]

Hi Laura and welcome to the board and this extended group of people we consider family!!!

It's great you are proactive with your health - we have all decided that that is the way to be. MC presents itself as differently as we are different - everyone reacts to treatment differently also.

The only way to diagnose MC is through biopsy of the colon during a colonoscopy so it is good you are scheduled for that test.

There is so much to learn here and I can only suggest that you continue reading and ask, ask, ask. We don't get grossed out too easily, so ask any question you desire!

If you are 110% sure you have not ingested gluten then I would wonder if you have other intolerances that you have not identified. There are many articles here and posts related to food intolerances. If it is easier to ask than search - go right ahead - we are here to help!!!

I'm happy you posted - you will find great support and comfort from those here!

Again, Welcome!

Mars

[Jean]

Laura,

Very glad to meet you, but sorry you had to be sick to find us.

I'd be willing to bet that you have developed other food intolerances. Dairy, corn and soy are good possibilities. Most of us who follow a diet to control our MC have multiple intolerances. I was gluten free for six months before I discovered my other intolerances (thanks to the wonderful people on this site).

You might want to consider going on an elimination diet. You can find an explanation on this board. Go to User Groups then Information on Diet. Basically, you eat a few foods until you feel better and then you add one food in at a time and see if your symptoms return. It's a pain, but works. You've already given up gluten, so you know what you're doing.

Please keep us informed on your progress and ask any questions you want. OR, moan and groan, we are good listeners because we've been through it!

Love, Jean

[cludwig]

Hi Laura,
I was diagnosed with MC 5 months ago and found this group of people 2 months ago.They have all been so kind and helpful....they either have the answers or they will help you find them. I've been peppering them with every question that I could think of( even the gross ones) and they are always there for me.

In my particular situation, I started with eliminating gluten(I'm not celiac, but gluten intolerent apparently)......but found I needed to eliminate all grains to start feeling better. Not everyone has to do this, but it seems to be helping me so far.

Good luck with your test. It will be good to have answers one way or the other.

Love,
Cristi

[tex]

Hi Laura,

Thank you for joining us, and please make yourself at home. I'm sorry to read about your food sensitivity problems, and I hope that we can help you to find ways to resolve those issues.

To add to what has already been said, I was on the GF diet for over a year before it dawned on me that I must be intollerant to other foods. I started keeping a detailed food diary, noting BMs, symptoms, how I felt, etc, and eventually I was able to track down the culprits--casein, corn, and most sugars. (Most of which I can now eat again without problems--now that my gut has completely healed, after almost 4 years on the GF diet).

If you are not already avoiding it, casein is the most common problem protein, after gluten. Some here have serious problems with the lectins in legumes. Sulfites cause problems for others. Some intolerances, such as corn, are much more difficult to avoid than gluten, because they are in virtually all processed foods. Doing all your own food preparation, such as you are already doing, is certainly the best way to assure the purity of your food, assuming that you're starting with pure ingredients.

Karen, (moremuscle), had an experience similar to yours. She did well on the GF diet, (while also avoiding dairy, soy, and corn). She suddenly began having symptoms again, and finally tracked her problem down to soy lectins in her favorite chocolate. If I recall correctly, they weren't even listed on the label, due to a glitch at the manufacturer.

We'll do our best to help you in any way we can, and I'll bet that after we all put our heads together for a while, we can figure out how to get you back on track, so that you'll be feeling like a million bucks before too long. I'll also bet that when you inform your GI how you did it, (with diet), he won't believe you, (unless he's one of the very, very few who are really up to speed on MC).

Today is the first day of your journey back to health. You will get your life back.

Welcome aboard,
Wayne aka Tex

[Lucy]

Hi Laura,

Nice to have you aboard.

I was just wondering how you approach your gluten free diet -- do you eat much of the processed items designed to look and taste just like the real thing?

Most of us buy foods that have as little processing as possible, and I look for things with as few additives as possible which is a good practice for anyone, in my opinion.
With the more permeable guts that we have, it is easier for various toxins, pathogens, and other proteins to enter the blood stream, even after going gluten free, from what I've recently learned, so we need to go for the purest food sources that we can.

If you happen to be one of the MC'rs who has particular difficulty with fiber in your diet, you might want to find a good list of soluble fiber foods, the vegetables in particular, on the net, and try eating those in larger quantities instead of the insoluble fiber foods. You might also want to try cooking things with fiber a bit more than you would ordinarily until things heal up.
If that doesn't work, you might try straining off the liquid part of the family veggies (safe from allergens, of course), and try drinking that for the nutrients until you tolerate the cooked veggies better.

If I were you, I think that I would have mostly meat and vegetables as described above for my meals, and prepare them as simply and as well balanced as possible as tolerated. Avoid anything that is a known excitotoxin.

If at all possible, fix lean organic turkey meat or wild Pacific salmon as often as you can, with your meats. These are supposed to be better for you anyway. Grassfed is always better. Be sure that you never eat anything injected unless you know that it's not injected with anything but salt and water, for instance. I would eat a few simple foods in the most basic form for a while, while I was trying to eliminate things, and notice the difference in my symptoms, if any.

I would go easy on the fruits for a while, particularly the fiber such as is found in the skins, for example. If you can, try to eat all organic veggies and fruits for a while. I like to get frozen bags of organic strawberries and blueberries to include in my smoothies, for example. They are expensive, but they are always pick of the liter, and there's no labor or waste with these.

If you can't buy all organic fruits, then I would suggest you get the organic strawberries and organic apples for sure as they are known to contain the most pesticides.

In other words, eat the very best foods you possibly can in the simplest, yet most digestible (cooked) form that you can.
You will be amazed at how flavorful some of these organic foods can be without much "fixin' up." Take care not to overdo on oils, and I would avoid flaxseed products for a while as some have problems with that. Nuts are a good way to get protein and fat in the diet, but one has to be careful to discover and remove any nuts that seem to cause you problems.

Instead of whole or small bits of the nuts I tolerate, I get small jars of organic nut butters in the smooth form, and that way, I don't have to worry about getting little nut fragments stuck in my diverticuli. I've been known to throw a little bit of one of those smooth nut butters into a smoothy for the added flavor and protein along with the banana and frozen fruit of choice along with apple juice for the liquid portion. These are yummy! Perhaps you've already been doing the smoothies. Have you learned about the frozen, skinless banana trick for a really simple treat?

Also, you might consider laying off some of the fermented types of condiments for a while.

I've suddenly gotten too sleepy to continue, but please work on eliminating various things, like dairy or casein, for starters, and you'll get lots of help from this group as you work through this.

Yours, Luce

[celia]

Hi Laura,

Just want to say hello and welcome you on board. I applaud your diligence on the gluten free diet! Seems like there's a good chance you have an intolerance to another food and you've already received oodles of great advice.

Another option is to take Dr. Fine's tests, which many of us have done on the site. In addition to testing for gluten intolerance, he tests for casein (a dairy protein), egg white protetin, soy, and yeast intolerance. You can find out more at www.enterolab.com

My testings showed an intolerance to gluten and dairy, but I also have react to corn, sugar, grains, and a number of other items.

Good luck with this next phase of getting well again!

Warmly, Celia

[Polly]

Hi Laura and !

What a bummer! You have been rigorous about your GF diet for 2 years and now you have constant diarrhea (D). I do know that a certain percentage of celiacs go on to develop MC, so it's good that you will be having a colonoscopy with multiple biopsies. If you have Crohn's you should be having significant bleeding from the rectum......which is not a symptom of MC (unless, of course, you have another problem such as a C. difficile infection).

I am one who is mulitply intolerant. Check out the list of my trigger foods to the left of this post under my avatar. It does seem that those who are gluten intolerant often develop other food intolerances. I agree with Wayne - the 2nd most common intolerance around here seems to be dairy. Not just lactose intolerance (intolerance to the milk sugar) but casein intolerance (intolerance to the milk protein). This means that one must avoid ALL sources of dairy. It might be worth a trial to see what happens.

Usually Bentyl is not a drug that is very helpful for MCers. It works better for IBS, I think. Of course, if it is helping you, great! Did you check to make sure that the Bentyl doesn't contain any gluten? The best symptomatic relief for us seems to be Imodium or Lomotil. Others here have found relief with the prescription drugs Asacol, Colozal, and Entocort.

Please let us know when you have your colonoscopy and the results. If you DO have MC, we will help you in any way possible to regain your health. As Wayne says, it WILL happen. Looking forward to further chats.

Love,

Polly

[starfire]

Laura

Wow, life sure has given you a full plate (maybe overflowing).

I have to agree with the others....you probably have developed MC on top of Celiac.........and since you have been gluten free for so long.......you probably have developed another food allergy.

Although I use Asacol to control my MC symptoms, I do believe that avoiding food intolerances works (how could I not with the evidence of the people on this board who control theirs with diet). I also know that Asacol is not a "cure" (or any other drug).....at least it's not for me because I can tell that if I weren't taking it, I'd be in rough shape.

Please come here often, ask questions...........we have some wonderful people here who take time to research if they don't know the answer and often, even if they do know the answer they still refer you to "net sites", books, etc. where you can read for yourself and decide your best course.
Also, people like myself often learn a lot from other's questions.

Love, Shirley

[LauraJ]

Wow, thank you for all of your thoughful and kind words! It is nice to have some insight as to what people have gone through and have to deal with.

Mars---I am happy to know that y'all don't get grossed out As a Celiac, I have no shame left!!! Thanks for the warm welcome.

Jean--Yes, I am sorry to have to meet yall under these circumstances, but I am forever grateful! Everyone seems so helpful and reminds me of the glutenfreeforum.com. Thanks for the suggestion of the elimination diet. I had - kinda- tried it about a month ago but it didn't matter how little or what I ate, I just kept getting sicker. My colonoscopy/biopsy if next Friday at 8:00am so keep me in your thoughts!

Cristi-Wow, taking out all grains---I admire you! That must be difficult but the results are worth it I'm sure. Its nice to know there are others out there that are Celiac/gluten intolerant and have other "issues"----I tell myself I'm just extra special, haha!

tex--Thanks for the warm welcome! Sounds like you (an others) have had quite the time with GI issues. I have really wondered about other food intolerances...just can't seem to figure it out. Thanks for the encouragement---I must admit, some days I really need it! Not that being sick is fun at any age, but to be sick when I'm newly married and trying to start my career can get you down. Luckily I have a wonderful husband and great info sources from here and the glutenfreeforum.com. I think my plan for right now is to see the results of the colonoscopy and go from there. So, I take it that everyone's diet varies (i.e., for Celiac, the basic answer is gluten free; but for MC, it kinda depends)

Ok, I will add more responses later on today-need to get back to work--but I will respond to the others later! And, still thinking of questions to ask.

Thanks for making me feel so welcomed....I felt so alone when I was dx with Celiac bc I didn't know this whole world was out there. I am so happy I have found this site, so that I know what I'm up against (potentially).

Laura xoxo

[Peggy]

A quick welcome from me Laura. I'm just back from a week in New York meeting some of the peoples from this board - and hooking up with one I've met before. This is truly an incredible family.

I was diagnosed with collagenous colitis Jan. '03 and don't know what I would have done without the support of all my friends here. Sadly, you're not alone, but happily you can talk any kind of cr*p you need to here...and feel comfortable doing it. We understand.

Love Peg
43 yrs-old

[artteacher]

Hi Laura,

My food situation is very similar, although not identical, to Polly and Karen's. I'm intolerant of gluten, dairy (lactose and casein), grains, eggs, to name a few. The big ones are gluten and dairy, if I had to prioritize.

I'm 51, developed lupus and "D"/IBS 12 years ago, was diagnosed with lymphatic colitis about 3 years ago. It is currently gone, or in remission, according to my doctor, & he has found the MC "no longer in evidence". However, whatever state of curedness I have is due to controlling my diet, not due to anything he prescribed. (Other than the fact that he recommended trying Pepto Bismol based on Dr. Fines research, which led me to look him up on the internet, which led me to this website.) The two most helpful things leading me to remission of both lupus and LC/MC are the PP Website and diet control, in that order.

You'll never find more supportive gentle people. Nice to meet you!!!!

Love, Marsha

[grannyh]

Welcome! You have found a great place to get all kinds of answers.. hope you get more information from your colonoscopy..
grannyh

[LauraJ]

part 2 of my response:

Luce: Thanks for your detailed response! Gave me a lot to think about. In terms of your question about my eating habits, I would say I am kinda in the middle---some things are processed, some are more natural. By default, a lot of the gluten free stuff is also organic so I do get more natural/organic stuff. I make everything from scratch or semi-scratch, except for the occassional Amy's frozen foods which are organic. Can you give me more info on fiber? How would I know if I need more fiber? Nuts have definitely been a help for me, esp since I started the gf diet, to help get protein in my system. My husband and I both enjoy the fruit smoothies, and the grocery store i go to mainly carries the organic frozen fruits, so I am enjoying those! Interesting enough, I think that there is something about turkey (at least lunch meat turkey) that bothers me...I even tried the applegate farms one and got sick from it. Its very rare for me to nail it down to something, as I am sick often, but that one was a pretty obvious one. Don't use much oil except for olive oil....Husband has been cooking out lately so its been nice to eat "simple" things like you suggested. Thanks for bringing up a lot of the issues---nice to see them all in front of me, for possibilities!

Celia---Its amazing how easy the gluten free diet can be when you get so horribly sick from it! Thanks for the welcome. I have heard a lot about the Enterolab testing from people on the Celiac website but never thought I would need it since I already knew I was a Celiac (or, in my house, we laugh and call it the "Celi-crap"....minor things like that crack me up!) I may need to look into that again!

Polly --- Yeah, I was pretty bummed when I started having "more" issues...thought that the Celiac was enough! Apparently, it was just the tip of the iceberg! I am so strict about gluten, because I am so horribly sensitive, but its nice that my dr's recognize that I know that this is different than just a Celiac reaction. I asked my dr and he said he would be taking multiple biopsies, thankfully. I had read about the bleeding-Crohn's relation and I don't have that. The dr knows that but still wanted to check. Hey, at this point, sometimes checking things off your list is all you can do. I had heard that once you have one food issue, you are more likely to have more. Interestingly enough, its something that none of my dr's ever suggested, but have kept in my mind thanks to the two forums I visit. Girl---I know about Immodium! I honestly should have stock in it. I "hide" it everywhere so I always have some---in my purse, in my wallet, at work, in my car, at home, in my husband's wallet, in his car....I go through them quickly so its good to know I always have them "somewhere" waiting for me! Bentyl is helping, but only but so much---but then again, it helped control my symptoms before I was a Dx Celiac, and we all know that it didn't stop the problem-just masked some of the symptoms. At the very least, this combo is letting me live somewhat normally---much better than having to go home from work early every day due to the pain. My biopsy is scheduled for Friday the 30th at 8 am...I will keep yall updated. Thanks for introducing yourself!

Shirley--I do have a lot on my plate---too much I think. I was terribly upset to find out I had Celiac. You kind of have to "mourn" the loss of how you lived your life in terms of food. My mom kindly reminded me that I could have ended up with something much worse, something that was really debilitating, so I try to keep it in that perspective. No matter how hard your road is, there is always someone (actually lots of someones!) who have a harder road and I try to remind myself of that. But some days when certain foods look so good, its hard to remember it! Now that I have it though, I know it was a blessing for me--at least I know what it is and can deal with it. The hard part now is not knowing what the new problem is. What is asacol? Is it a steroid? What symptoms do you have and what does it help? Question to you and others---will my tests show MC if I am on Bentyl and Immodium? Can that mask the damage?

Peg---I love your little newbie animation :) that made me smile. I like to think of myself and a pretty experienced Celiac, so its weird to be on the other side of the fence as a newbie! But its nice that the more experienced people on here really seem to "get it." Thanks for the welcome!

Marsha---YOU have a lot on your plate, my dear! I must say, I am a bit intimidated at the thought of having other intolerances. I had heard about Dr. Fine's research/Pepto Bismol. It worked/helped for you?

I really, really appreciate all of your responses! Thanks for writing....

[Tessa]

Hi, Laura



Glad to meeting you, though I would rather prefer you to be healthy. I am sorry you are feeling so bad.

I am sure you will find a lot of help and support from this forum. Not only from previous posts but also from the people. They love to help. Well, we love to help. I include myself, because - even though - I am not an expert, whenever I can, I will do my best to contribute and share my experience.

Thank you for joining the forum and expressing yourself so sincerely.
Please, feel free to ask and contact (by the forum or a pm).

Take care and, please, keep us updated,
Love
Tessa