Cause of LC? Can it be just stress?

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tex
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Post by tex »

Paula,

Thanks for the kind words. When that post seemed to go over like a lead balloon, I was beginning to worry that I might have unintentionally insulted everyone.

Please don't feel like the Lone Ranger. Most of us have relatives with similar problems, but trying to convince them to change their diet is harder than selling ice cubes to Eskimos. No one wants to change their diet if they can possibly find a way to avoid it. A lot of people are willing to try just about anything in a pill bottle, no matter what kind of side effects it might cause, so long as they don't have to change their diet. :roll: And if their doctor says they're not gluten-sensitive, then , by George, there's no way they can be gluten-sensitive.

And yet, statistics show that only approximately 5% of celiacs are ever diagnosed. That's only one in 20. Gee, you don't suppose there could be anything wrong with their diagnostic methods, do you? :roll: And, of course, there are many, many more people who are not celiacs, but who are still gluten-sensitive, who will never show a positive result on those tests, because of the extremely low sensitivity of the tests. :sigh: And the doctors continue to arrogantly pretend that they are doing a good job of diagnosing gluten-sensitivity. If I were only able to get 5% of my work right, I would hang it up, and look for another line of work. :lol:

Tex
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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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Post by Stanz »

Hopefully someone else can find more information about celiac testing, but this article says that they are inaccurate about 80% of the time and I actually think it is higher. Don't know if there was ever a poll here for those who tested neg for Celiac and then positive for being genetically sensitive, but not a bad idea. http://www.celiac.com/articles/22310/1/ ... Page1.html

I just got back from an appt. w/my ND and we talked about the blood test. He's the one who told me originally that the blood test was pretty worthless if you look at the statistics on who's celiac as opposed to who's GS.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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sarkin
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Post by sarkin »

Tex,

I totally loved that post (and I'm sure a lot of us did, but we got sidetracked playing with the food in our hair... Sidetracked is my *favorite* thing to blame on gluten, btw!)

I'm not going to get riled up about the idiotic diagnostic criteria that leave so many people suffering unnecessarily with the assurance that gluten cannot be their problem - or the advice that they should continue to eat gluten *for the sake of the tests*... but I'm kind of on a hair trigger on that issue, so I reserve the right to flip my gluten-free cookies and go On Rant, Big-Time at a moment's notice :lol:

One of my favorite moments was explaining my Enterolab results to my doctor, when I'd been GF for months. At the end of my appointment, she exhorted me to really "try" to stick to the diet. That's right, I had to tell HER that I have a terrible problem with gluten, and that eliminating it had saved me from probably hospitalization... and then suddenly she was the expert in telling me what to eat?

I have a gyn appointment tomorrow - follow-up from previous, should be routine. She's been pretty good so far, and I'm trying to figure the etiquette of asking her for a referral to a new PCP - my current PCP is the one who referred me to her in the first place. Or maybe she knows a good GI (hahaha)...
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Post by draperygoddess »

Paula--I am waiting on my genetic test results from Enterolab before starting in on my family, because I think I will have some "proof" then, but digestive issues are absolutely rampant in my family as well. When anyone hears what my diet is now, they want to feel sorry for me because of what I can't eat, but I want to tell them, "No, you don't understand! This is so much BETTER than the way I felt before!" I'm hoping my improved health (and test results) will show them that there's something to all this.

Tex--I have ALWAYS put my food in my hair. When I was a baby, they tell me my signal that I was finished was that I would wipe my foody fingers through my hair. Actually managed to get something sticky in it today (that could have been the toddlers I was taking care of, though!). I think there's a lesson to be learned here: my hair is still all present and accounted for. I think it's because of the food. Well-fed hair sticks around!
Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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Post by tex »

Cynthia wrote:Well-fed hair sticks around!
When I was still a toddler, one day when my mother got back home after grocery shopping with myself and a younger sister, she couldn't decide how to handle the logistics of carrying everything into the house, because she was afraid that we might get into some of the groceries and make a mess, while she was carrying in the rest of the food. So she decided to first take in a half-gallon of syrup, and some other canned goods, thinking that we wouldn't be able to get into any trouble with them. Then she brought us into the house, and went back for the rest of the groceries.

By the time she got back with the rest of the groceries, I had somehow opened the half-gallon of syrup, and had transferred most of it into my sister's hair. :roll: According to my mother, we were both as happy as larks, but of course, she wasn't. :shock: She eventually had to give up trying to wash out all of the tangles in my sister's hair, and had to finish the job with a scissors. Apparently it's possible to overdo the food in hair thing. :lol:

Tex
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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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Post by Lesley »

LOL!

Did you see the video with 2 little boys with a 5 lb bag of flour? The mother had the presence of mind to make a movie.
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Post by humbird753 »

A question I'd like to throw out there....

When I started going to the naturopath doctor I tried to be very thorough about things that may have preceded the D. I was under extreme stress with my mom dying, and finding by birth daughter and preparing to see her for the first time on her 39th birthday. Several weeks before meeting her I felt I needed to take something to help me calm down enough to hopefully sleep well. I started taking Melatonin (over-the-counter) which is found by vitamins, etc. The D started within a week if I remember correctly. The doctor said it should not be an issue. So since stresses have continued with meeting daughter several times, mom passing away, then 1 month later my boss' wife had a severe stroke, and then 4 days later I ended up in the hospital to have appendix removed with diagnosis of "gangrenous appendix with perforation" (the appendix removal was 7 months after D started), I continue to take the Melatonin since she said it shouldn't cause this type of reaction. However when I went online today looking for Melatonin side effects, there is one side effect that says gastric disturbances. So wondered if anyone had any thoughts on this one.

I may eliminate it to see if there is any improvement...

I enjoy reading everyone's posts - lol



:smile:
Paula
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Post by humbird753 »

You ask about what other "symptoms" you may have had previously could be related to MC that you might have missed. Quite a few of us here have had a history of skin issues, i.e. eczema, psoriasis, rosacea, blistering on hands and feet, scalp issues, nail fungus, etc.
Sorry I did not comment on this sooner, Connie. No - I don't have any of those symptoms either.

It is an interesting question, though, because my husband does have most of those skin issues, and I have told him for years it was because of his diet. I was only guessing when I said that, and was contributing it to the high carb intake he has at most meals. But as has been said here, nobody wants to change their diet...

Are you saying these issues are also autoimmune related?

:grin:
Paula
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Post by nancyl »

Hi Paula,
I can't agree more with all the tips that Kari has given you. I am GF, DF, SG, and EF. At first I was still eating fruits and veggies, and had to eliminate all of those too. I slowly began to add the veggies back, but I steam or roast them until they are well done. I stick with just a few fruits and either put them in a smoothie or do the baked apples until well done.

In the beginning, like Sara, I stopped taking all supplements except Vit D and calcium. I have also had to change brands finding ones that were safe for me. I now take all that I think I need without a problem.

I also have to stay away from fatty foods. Last week I had gravy on Thanksgiving made with corn starch. Once would have been fine, but I got a cocky and had it for leftovers for the next two days. I paid for it one morning with pain and several trips to the bathroom, but bounced back pretty quickly.

I have been able to tolerate eggs as an ingredient without issue.

I will say that I was pretty bad for almost 9 months and my doctor put me on Entocort, which helped tremendously. I am now weaning off.

Nancy
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tex
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Post by tex »

Lesley wrote:Did you see the video with 2 little boys with a 5 lb bag of flour? The mother had the presence of mind to make a movie.
Yes I did. :lol: Fortunately, the flour was still out in the car, so all I had to work with was molasses. :grin:

Tex
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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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Post by tex »

Paula,

With all that stress, it's no wonder that MC developed.
Paula wrote:However when I went online today looking for Melatonin side effects, there is one side effect that says gastric disturbances. So wondered if anyone had any thoughts on this one.
The general consensus of opinion among IBD researchers, is that melatonin should generally be beneficial to sufferers of IBDs, but I'm not aware of any published research that verifies this theory.

http://www.ncbi.nlm.nih.gov/pubmed/18626968

Tex
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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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Post by tex »

Paula wrote:Are you saying these issues are also autoimmune related?
I'm not Connie, but IMO, yes, those issues are definitely connected with autoimmune syndromes.

Tex
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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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Post by Stanz »

Paula,

Quite a few of us here have had some or all of these issues and certainly the skin issues are autoimmune related. Not sure about fungus issues, but discussed this yesterday with my ND in relation to my "weeping ears" and nails that separate from the skin underneath them erratically. He believes that there is a connection to GS damage and a susceptibility to fungal infections.

I am getting Prolotherapy from my ND to replace lost cartilage in my wrists and fingers that is the result of the autoimmune response to gluten. He has found that the patients he sees for joint damage, who will adopt a GF diet, are having remarkable results for other symptoms that they never came to him for. Yesterday he shared a story of an 80 yr. old woman with severe back pain that he's been treating for several months now. First with Prolotherapy for her back issues, and since with digestive issues that she didn't think were connected. Even at 80 she has had remarkable improvement in a very short time.

There doesn't seem to be an exact age when GS shows itself and can't be ignored, but late 50's seems to be the most common age. Looking back at just my life, my 2 daughters and 3 grandkids, when you chart it out it's pretty conclusive. I've written about this here before, but since you are new here I will relate a bit of my story. I am GS via Enterolab tests in late '09 when I found this place after being dx w/both C & L MC. Since then, 1 daughter and 1 grandson, who is only 2 and was dx with Crohns at less than 1 yr. old, have tested positive for GS via Enterolab and are GF and doing well. My other daughter has been GF for over a year longer than I. She is in Nursing School, she had had IBS, w/both C & D for years and chose to go GF because a friend with the same history had found success with it. Both her kids, had intestinal issues almost from birth and both instinctively won't eat bread, which is verbotten in their house now. As an aside, both of my daughters fought weight issues and bloating all their lives before going GF and I guess I did as well. Going GF for them has resulted in dramatic weight loss w/o dieting. I don't know where I fit in there, because most of my lost weight occurred during my 3 years of D, but we are all now at about a size 6 - down from 10-12.

My paternal GF died of an intestinal obstruction, my mom of stomach cancer, 2 siblings of colon cancer. My mom had 10 children. 4 of 6 of us females had "endometriosis", 5 of 6 of us girls have had "arthritis" - including my Mom - and NONE of us have had the genetic markers for what we've been "diagnosed" with for "arthritis" as far as I know. 2 of my older sisters are severely arthritic and walk with canes, one has had a spinal fusion, the other is literally circling the drain. The boys in the family fared no better and only 2 of 4 are still alive. I have been unsuccessful in getting any of the living to be genetically tested, although 1 has gone GF and feels much better, and have just given up at this point. One nephew - an MD - has already had a bowel resection and both his daughters have Crohns and are Nursing students who apparently are just fine w/o changing their diets and taking steroids in their 20's. We're not a close family so I don't know medical histories of most of the nieces and nephews and their children.

You can look at all this, and your family history and see what's there and you don't know what's coming down the pike with your own health and I know how overwhelming all this new information can be. Joan posted a link to Dr. Mark Hyman's article on this a few days ago:
http://drhyman.com/gluten-what-you-dont ... ll-you-11/
This is also a great article:
http://drhyman.com/why-treating-your-sy ... aster-3520

There is a wealth of information there, especially if you read the comment section where people talk about their own experiences. My PCP's husband has a family history of Crohns and knows gluten is a trigger, she said he "tries to avoid gluten". You can't fix stupid, she's is an MD, and that's what she said when I took my Enterolab results in and asked that they be a part of my medical record.

Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Post by sarkin »

Tex, Cynthia, I believe we have just discovered an early "predictor" of gluten sensitivity, and it involves food in hair! My most spectacular episode involved cottage cheese (I believe my mother used a white, creamy styling product at the time, and as I sat there in my high chair, it must have seemed the obvious thing to do).

Nancy, it's nice to hear that things are going so well for you - YAY!
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Post by Sharaine »

Hi Paula,

First, :welcome: I'm glad you found us. The members of our family here have greatly helped me since I was diagnosed with MC in June of this year. It is entirely overwhelming to find out you have to change your diet, but it is do-able.

I agree with Kari about the vegetables. If you're going to insist on them, make sure they are cooked til smushy. Also, avoid lettuce or if you MUST have it, use Romaine. BUT, if you can, avoid lettuce and cabbage for a long while. The roughage, as Sara pointed out, is like rubbing sand on a sunburn. As someone who loves salads, it was hard for me to initially cut out lettuce, but it sure helped me.

Also, watch out with your supplements. I was prescribed 400 mg Riboflavin (B2) to combat some cerebral vascular headaches I get. The Riboflavin caused my MC to flare big time. I'd been off of Entocort for about 6 weeks, but had to return to it because Lialda didn't help at all. Fortunately, I respond well to Entocort except for hair loss, which seems to be less this time around, thankfully! As Kari and Sara mentioned, you need to read EVERY label on anything you eat, including supplements, to be sure there is no gluten or dairy.

I am one of the individuals who cannot handle gluten or dairy. I get massive headaches and become foggy in the brain for days on end. I even have to take naps in the middle of the day if I get "glutened". Also, when I eat something that disagrees with me, my stomach churns for days on end and the D is unrelenting.

I do understand that this is overwhelming. Hang in there. Keep asking questions.

Hugs, Sharaine
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