My Biopsy Results

[moremuscle]

Hi Friends,

This is an interesting thread - Thank you for sharing your knowledge and insights.

Polly, I understand your frustration with your almost perfect results. You've been very deligent with your diet for years now and then you actually "intentionally screw up" just a few weeks prior to your tests possibly resulting in bad results; you are blaming yourself for making this mistake - of course there is no going back It must be frustrating but like Matthew said please just try to look at it as the glass being almost full - not half empty, OK!

I don't understand what causes MC and I don't understand what MC really is - the only thing I seem to understand is how to avoid MC reactions on a permanent basis; no small accomplishment!! My diet is the key to controlling my MC reactions and you've taught me that. Thanks again.

Like Lucy I don't get MC reactions when I am under stress - I am almost always under stress but some days or weeks are clearly worse than others; no MC reactions due to stress.

Jean suggested, as far as I understood you, that the other food triggers such as dairy, corn, soy (the proteins in these) cause the same reactions that gluten does (in those of us who have reactions to those proteins); based on my personal experience this is the impression I have too; IOW, I don't rank the food triggers as gluten being any worse than my other intolerances. This may be too simplistic on my part; perhaps gluten causes a greater production of zonulin than the other proteins (casein, zein etc)?

I am not sure what to make of the referal you gave, Marsha, to Dr. Fine not ingesting orange juice and rice; there seems to be a jump in logic?!

It would really be nice if anyone out there understood the disease and could explain it in layman terms - I always question what came first the chicken or the egg? Is MC a symptom of something else or is MC the cause of something else? Where or by which means does our disease process start? IOW, what is the cause? The imbalance of good versus bad bacteria is clearly not where it all starts - something has to have allowed the bad bacteria overgrowth to develop; we know this imbalance is a sign of disease but is it the cause?

As it should be evident I am confused but otherwise very well

Love,
Karen

[artteacher]

Hi Karen!

I've been missing you! It sounds like you're doing well and I'm so glad.
Yeah, I do that jump of logic thing a lot. It's kind of you to call it that.

I guess I'm picking out one thread of thought here: the chain of logic that says that MC is just celiac, but milder. If so, a gluten-free diet should allow the intestinal lining to heal, and then most, if not all remaining foods would be tolerated. That's what we see in celiacs.

Dr. Fine apparently is MI, and never expects to be able to eat gluten, or his particular food intolerences again, and told me I shouldn't expect to either. I didn't realize that. I thought that he's been saying that if a MC/LC patient goes gluten free, healing and normal digestion of all other foods would take place. (Unless that person is lactose intolerant, etc.)

Just like everyone is saying, it seems like we have isn't 'celiac lite'. It's root has to be something to do with zonulin, or bacteria, or other things mentioned.

I'm so glad to hear from you! Love, Marsha

[tex]

Actually, I think that the term celiac lite, is a misnomer. While gluten sensitivity of MCers may not show up on the out-dated, so-called, celiac blood test, that doesn't mean that the symptoms and health risks are any less severe. If it is to be linked with celiac disease, I think a more accurate nickname for MC would be celiac plus, since it so often involves multiple food intolerances, and additional symptoms, plus a seemingly higher risk of developing additonal autoimmune issues, if left untreated.

The celiac lite term was apparently originally suggested, to allow for the fact that gluten sensitibve MCers will usually fail a classic celiac blood test.

Love,
Wayne

[Polly]

Absolutely correct, Tex! I just said the same thing in a post to Marsha in the Diet Forum. "Lite" refers only to the fact that we MCers usually have less small intestinal damage at the time of diagnosis (and therefore come up negative on the usual celiac blood tests). I think OUR form of gluten sensitivity/MI IS more severe than celiac and presents many additional problems that we have to juggle. I like the term celiac plus - maybe we should start using it.

I have often wished that I were "just celiac". Think how much easier the diet issue would be. SIGH.

Love,

Polly, a celiac-plus sufferer

[artteacher]

Hi Tex and Polly,

Totally understood. I hope you don't take what I said as an insult to the term "celiac lite" or the person who coined it. It's a really good way to describe what bugs us. (I feel bad, because I knew when I typed it that it could be taken in a way I didn't intend) It's just that what works for celiacs "kind of, sort of" works for us, but not as much as I'd like. And I like that term, actually, so much that I use it to explain to people why I eat like I do. A lot of people now are beginning to hear about celiac disease, so it cuts through a lot of explanations.

Also, I think "Celiac Plus" is a terrific refinement.

As far as trying to figure out what makes me feel better, I'm in a much better place than before I was introduced to all of you. I know now to stay away from wheat and gluten, and to listen to my body in relation to all the other symptoms, and how I deal with them. And to not feel like a freak of nature because of it all.

Thanks Friends,

[Polly]

Not to worry, Marsha dear! I did not think that you were being insulting in any way. I am glad that you brought up the "celiac lite" business - it is simply our own term and certainly could be confusing to others who don't know our history here and what was originally meant by the term. And, you are absolutely correct - it doesn't accurately reflect what is going on with our form of GS/MI. I believe it is always good to question any of our established theories, etc. - it's the way we learn from each other here. I always enjoy your comments and viewpoint and have learned lots from you - please do not feel that you have to "censor" them in any way.

Love,

Polly

P.S. As to what I have learned from you, here is a case in point. Your research/knowledge about sulfites has made me revisit that issue recently. I am wondering if it could be a common thread with my corn/ soy/chocolate intolerances. I also don't tolerate coconut very well. In a recent post you mentioned a more extensive list that you have. I would be interested in seeing that, if it's not too much trouble. Thanks.

[Tessa]

Hey, very interesting thread, though sometimes I feel a little - confused - with all these words...

Polly, you have to be happy. The results show you are improving with regard to your last biopsy. That´s good news.
In relation with your indiscritions, that must have been the cause of the results... Sincerely, I cannot understand it. Do all of you have this kind of indiscretions?

I thought we had to be very strict with our GF & DF diet for the rest of our life and I have not tasted any G and D since my results. (At least not voluntarly, because we never know what we eat when eating in restaurants) Can you explain it? Please.

Thank you.
Love,
Tessa

[tex]

Hi Marsha,

Ditto what Polly said. There was nothing wrong with what you posted. I was just trying to add a little additional information, (IOW, my 2 cents worth, to it.

Please don't be bashful about posting anything--that's how we learn here. If no one ever posts anything that might be interpreted as questionable, or a matter of opinion, then we will be doomed to remain ignorant dullards, (speaking only for myself, here. LOL.)

I always enjoy reading EVERYONE'S posts.

Love,
Wayne

[moremuscle]

Hi Marsha - and all!!

Good to see you too, Marsha. I have a very full life right now and just don't seem to be able to find the time to sit down and read and write a lot on the board anymore. It is because I am much healthier than I used to be. I used to be so home bound due to the 'round the clock' explosive diarrhea; now I don't have that anymore and I am out and about being productive and social again. I am very happy with that; but I do miss the good old times in the GF Kitchen. AH, today's threads here remind me of those times; we questioned and discussed everything in great detail and had heated debates - it was GRAND - remember?!

Celiac Plus is an excellent term to describe the magnitude of problems that we MC/MI'ers have compared to a regular Celiac dude. Good job coming up with the Celiac Plus term, Wayne.

Polly, I often wish I was celiac - what a breeze it would be!! Then we could actually eat all of those gluten free products and much much more. Celiacs don't know how easy they have it, do they?! Oh, well, we just have to be smarter about our food choices, that's all.

Tessa, I understand your bewilderment. You are right to keep a strict diet!! As far as I see our problems and disease a strict diet is the ONLY way to go - never have intentional indiscretions; they are harmful to you.

I have only been on the strict diet for a little over a year now but during that time I have always been strict. It is my determination to keep it that way - but I will admit it can be difficult to imagine how I will feel when I have been on the diet for a much longer time - maybe I too will feel tempted to slack off and try something bad for me LOL!? I don't think so. Please, don't start playing with your diet; you need to give your body time to heal and get back in balance which is what you are doing on a strict diet. BTW, you are AWESOME!! How many months have you been GF, DF now? Are you symptom free or do you still need to eliminate yet other foods before you become symptom free? In my own case I needed to eliminate soy and corn too - soy was a BIG mistake for me. A tiny bit of SOY made my system go completely berserk- non-stop-diarrhea.

Gotta run!
(NOOOOO, not a bathroom run this time LOL!!) Love YA'!

Love,
Karen

[artteacher]

Good Point, Karen, Right On:

Dear Tessa,
I'm so glad you aren't tempted to stray from your diet. Please don't stray! If I do, it's probably because I've never really been as sick as some of the people on this board. My problems were LC, and lupus, and even when the LC was bad it wasn't as bad as some. And I get relief from Caltrate: I don't know anyone else here who uses anything like that to relieve symptoms. Because I can stray a little, and not notice it catastrophically, there are not the checks and balances you probably have.

Except with dairy, and that's another issue altogether: I never make a mistake with it. Ever. Because that's such an immediately negative awful reaction, I take pains to avoid any food that has ever in the history of man been known to have milk in it.

I think you're really lucky to have such noticeable improvement through diet that you're empowered like you are!

Love, Marsha

[Polly]

Hi Tessa,

Yes, please listen to Karen and Marsha and stick to your strict diet. It is the smartest thing to do. (In other words, do as I say and not as I do). LOL!

As for me, I have always been one to experiment. After long periods of totally avoiding my food triggers, the curiosity and temptation become too much for me, and I just have to try a trigger again to see if I still react.

I guess it's just my personality........I was always one who HAD to touch the paint when I saw a "wet paint" sign or HAD to step on the grass when the sign said not to or HAD to try to befriend the dog behind the "beware of dog" sign. And, since not a whole lot is known yet about the long-term course for MIs, I guess I keep hoping that the time will come when I can again have that grilled cheese sandwich.

Anyway, please update us on how you are doing? Have the specialists come up with a diagnosis yet? Have your symptoms improved? (Hope so). BTW, I never did receive your gift.

Love,

Polly

[Tessa]

I am so sorry, Polly about the gift, I´ll ask Babci again for it

Thanks for telling me I should continue being strict, though I really feel much... much better with a GF & DF diet, you know... I always liked cheese and it has been a little hard to stop eating it... But I prefer to be strict. My health has improved so much that everyone is impressed about it, even the specialist.


In relation with the breath problems: no results yet. (I have app. for May 2006!) But as I am feeling much better and reducing the drugs, it really doesn´t matter waiting.
Thank you for caring, Polly.

Love,
Tessa.

P.S: Polly, BTW did you got my 2 last pm? I was surprised not getting any answer from you. Have you been sick. I hope not.

[Polly]

Hi Tessa,

I just went back and checked my PMs and see that I did receive a message from you on Jan. 12 and one from Carrie on Jan. 15. I guess I forgot to respond to both. That was a very busy week for me - my niece went to the hospital to have her 3rd baby on the afternoon of the 10th, and I had promised to go to her house to take care of her two older kids as long as I was needed, which I did. Also, I had a rotten cold (even went to the doc the morning of the 10th) and then had the colonoscopy cleanout the evening of the 11, with the test on the 12th. That week was a "blur". I'm sorry I didn't get back to you.

Love,

Polly

[Alice]

Polly,

I'm sorry your results weren't exactly what you had hoped. I know you've been very careful.

I never had a repeat biopsy, but even after being very careful(i .e.paranoid) for a year, still had some damage, although it was significantly improved per Dr. Fine's tests.

This disease is such a ?????? sometimes!

Don't despair - you are doing remarkably well, in my book .

Love,
Alice

[MaggieRedwings]

Hi Polly,

Congrats on what is almost a 100% healty colon. Drat the "falling off the wagon" but we all have to some time or another.

The rest of the above thread is beyond me.

Will relay to you the results of tests I had done as soon as I can.

Love, Maggie