Non-Celiac Gluten Sensitivity

Joefnh · Post by **Joefnh** » Fri Jul 15, 2011 7:36 am

Well this is the first main stream article I have seen that more or less gets it right. Definitely a good start.

http://thechart.blogs.cnn.com/2011/07/1 ... nsitivity/

Murray explained that gluten sensitivity is a real entity and most likely represents more than one clinical condition.

The first is a condition that probably falls under the heading of gluten sensitivity Murray refers to as "celiac lite," meaning that a person may or may not have antibodies in the blood characteristic of celiac disease, does not have the intestinal damage seen in celiac disease (intestinal damage can be confirmed only by biopsy - taking a small piece of the lining of your intestine), but does have symptoms including abdominal pain, bloating, gas and diarrhea and does benefit in terms of symptoms from following a gluten free diet.

The second group of patients, categorized as having nonceliac gluten sensitivity, have the same symptoms of abdominal pain, bloating, gas and diarrhea, but do have antibodies or the genetic predisposition for celiac disease.

They are often told they have irritable bowel syndrome, but their symptoms improve on a gluten free diet (generally within one month).

Joe

Polly · Post by **Polly** » Fri Jul 15, 2011 7:44 am

Hallelujah!

Interesting that they used the term "celiac lite". Our own CA Mary here coined that term years ago on the original PP website. Of course, the symptoms from this (our) form of gluten sensitivity are anything but "lite".....they are just as devastating if not more so that those of the classic CD with antibodies in the blood. And, of course, we DO have antibodies in the first type above - not in the blood as in CD but in the stool as per Dr. Fine's tests.

Thanks for sharing.

Hugs,

Polly

Post by **tex** » Fri Jul 15, 2011 8:18 am

Well, when I noticed that this is the same Dr. Murray who is part of the Mayo Clinic team, I thought - "Wow! This guy is bound to be the black sheep of the Mayo Clinic family!". But then I noticed the following quote, so apparently he's still a true-blue team player at the Mayo, (though he's probably treading on shaky ground, in the eyes of his Mayo cohorts).

There is no reliable test to diagnose gluten sensitivity, according to Murray, so whatever your nutritionist ordered is not medically approved.

He knows damn well that Enterolab has a reliable test, but like all the other Mayo docs, he refuses to acknowledge the legitimacy of that test. Those Mayo docs are the most regimented I've ever seen - they are like peas in a pod. Apparently, someone over there rules with an iron hand.

Thanks for the link.

Tex

mbeezie · Post by **mbeezie** » Fri Jul 15, 2011 8:26 am

Joe,

I think it's a great start - we still have a way to go for the medical community to understand gluten sensitivity though.

This quote stood out to me:

One thing to consider is that many people feel better on a gluten free diet because they are eating less food overall (due to fewer choices) and cutting out most sources of refined grains, both of which are a good idea even if you don't have gluten issues.

I think that downplays the symptoms we experience from gluten sensitivity. I don't believe for one second that gluten free diets cuts out refined grains and junk food. As we all know there are numerous gluten free junk foods and fast foods available . . . and many more to come I am sure.

Mary Beth

Post by **tex** » Fri Jul 15, 2011 8:48 am

Mary Beth,

I missed that - you're definitely correct. That statement, (about the GF diet involving cutting out most sources of refined grains), couldn't possibly be more incorrect. Either the writer, (presumably Dr. Jampolis), doesn't have the foggiest idea what the GF diet is all about, (which is very unlikely, since she's supposedly a physician nutrition specialist), or she has a biased agenda.

Thanks for pointing that out - that's a very important point.

Tex

Joefnh · Post by **Joefnh** » Fri Jul 15, 2011 8:56 am

Mary Beth that's true but let's remeber that several grains do contain gluten so the statement while broad in it's terms does fundamentally recognize the issue.

Overall this has been one if the best admissions in the mainstream that recognize that gluten sensitivity is an issue, definitely a step in the right direction.

Given the diagnostic tidal wave thats coming there way mainstream medicine won't be bake to close their eyes too much longer.

Joe

garina · Post by **garina** » Fri Jul 15, 2011 5:19 pm

I am on the waiting list for an appointment at Mayo with supposedly an expertise doctor in MC. I thoroughly checked the internet and came up with a name in Jacksonville, which is a day's drive from where we live. Now, after reading these posts, I am hesitant to accept an appt there if they are closed-minded to EnteroLab testing and want things their way only.

I am armed with tons of questions in the hopes of getting honest and hopeful answers to this disease and perhaps a protocol as to what might work for me, except steroid usage, which I am against.

If no help there, I think I would like to try Pepto Bismol, but not 9 tabs daily. Would one or two tabs daily somewhat control the D, and could I take that on a daily basis? I have also read good progress regarding a drug called Asacol. Anyone know anything about this?

I know we are all desperate for something, anything, that would work, if not a cure, then control to the point of a normal daily life. I have to try, I will always try.

My EnteroLab results are not back yet, as I have just mailed them early this week. No matter what the results are, I do know gluten-free is the way to go. So far, on this diet, I have no bloating (a true blessing), still have the gurgling, but no gas (another blessing), and still the dreaded D, which has not improved yet. However, I feel hopeful, even with this small victory to my gut.

I am torn whether or not to accept a Mayo appt. when and if I should be called. They said it wouldn't be until late fall.

I want to be able to go on our cruise in Sept. with better D control. I am hoping by that time, that the GF diet will play a big part in D control. If not, I want a back-up. Hopefully, I will have more knowledge by that time. Darn, this is hard!

So far, what I've learned, I learned from all of you, and I thank you.

garina

Post by **tex** » Fri Jul 15, 2011 5:47 pm

Garina,

Please don't misunderstand us, the Mayo GI specialists are excellent doctors, and they know their stuff, but a couple of other members have had appointments there, with less-than-spectacular results. Apparently, they go strictly by the book, and they don't, (at least not yet), believe that diet changes are appropriate for treating MC, (other than the usual advice about avoiding caffeine, spicy foods, etc).

It's not impossible that a lower dose of Pepto might work for you, but the original "Pepto treatment", as developed by Dr. Fine, over a decade ago, called for 8 or 9 tablets per day, (or the liquid equivalent), for a period of 8 weeks. In conjunction with the GF diet, it gave approximately an 85% success rate, in trials. Without the diet, though, relapse rates are rather high, (which is true of any treatment based on medications without the diet), so in recent years, Dr. Fine has recommended the diet alone, (without the Pepto, since some people can't tolerate that much bismuth subsalicylate).

Asacol is the oldest drug based on mesalamine. It's biggest problem is that it contains lactose, which many members here are sensitive to, so it can either not work, or even make symptoms worse, in some cases. Some of the other drug options based on mesalamine include Colazal, Pentasa, and the newer ones, such as Lialda, Apriso, etc. These drugs are usually slower to bring remission, but they are not corticosteroids, so they generally carry a lower risk of adverse side effects, though all drugs carry some risk of side effects, of course.

If you adopt the right diet changes now, maybe by fall, you'll be doing so well that you won't feel the need to see another GI doc.

Tex

deltawolf · Post by **deltawolf** » Fri Jul 15, 2011 6:04 pm

Garina,

I was just diagnosed with LC 06/17/11. I already was diagnosed with Celiac Disease in April 2007, so I have been Gluten Free for 4 years. My GI who specializes in Celiac immediately put my on the Pepto 3, 3 times per day for a good 2 months and then to slowly wean off. I have seen improvement, but I feel my biggest fear that I have to cut out the milk. This is going to be tough. But cutting out Gluten 4 years ago was tough too, but I did it.

After joining the group I tried cutting out basically any real food besides bananas, apples, eggs, chicken and tea and started to do much better. Then I went back to eating my cheese and having a bowl of cereal and milk in my coffee and the D has come back with like a terror. So back I go to no milk and we will see what happens. Really craving it though, but I need to find some substitutes and just get my mind off of it.

I do occasionally take an immodium if the D really flares up but the Pepto is making a difference. However just keep in mind if you do take it that it can turn the back of your tongue and stool black. I was not aware of this and got a bit freaked out.

Good luck to you though.

Post by **tex** » Fri Jul 15, 2011 8:29 pm

Amy,

Try Silk brand Almond Milk for cereal and cooking. I don't drink coffee, so I have no idea how it might work for that. I believe that Silk is the only brand of almond milk that doesn't contain soy, and it tastes great. I like hemp milk better than cow's milk, but some of us get some bloating from it, (including me), so I switched to Almond milk, when Silk started selling a soy-free version.

Tex

sarkin · Post by **sarkin** » Fri Jul 15, 2011 9:11 pm

Amy,

I'm a big almond milk fan - and I like my own homemade even better (there's a recipe in the forum "Dee's kitchen" - http://www.perskyfarms.com/phpBB2/viewforum.php?f=7 ). We have also had good luck with So Delicious coconut milk. They have several flavors (I like the plain/unsweetened), and they do make a coffee creamer as well.

Tex is absolutely right - reading the ingredients list is key. We use hemp powder in our breakfast smoothies, but I waited till symptoms were settled to try it.

For me, the gluten is my worst nightmare... dairy is fighting hard to take that prize. I use nut milks and coconut milk, and have made 'cashew cream' as a yogurt/sour cream substitute for soups, sauces or dips (and have tried it with other nuts, too).

Garina - any medication that works for you is great - we have members here who have had good AND bad experiences with almost anything you can name. And Tex is right (again!) that if you get your diet readjusted, you'll feel good on the way to that cruise, and you'll be able to maintain that so your cruise is a delight. You could start today to drop dairy/soy (the most likely ones after gluten), and see what your Enterolab results say... it can't hurt to try, and since it's hard to get the hang of it, you'll be good at reading the fine print on labels either way ;)

You can absolutely travel with food sensitivities - hope you're feeling better already,

Sara

nancyl · Post by **nancyl** » Sat Jul 16, 2011 7:34 am

Garina,
I also hated giving up dairy. I was brought up on a dairy/horse farm. Like Sara, I make my own almond milk. For me it's not something I can down a glass of, but occasionally in cereal I can tolerate and it's great in cooking or baking.

Tex, I am going to try the Silk brand to keep on hand.

Sara, how did you make the cashew cream? I have bought some, but haven't tried it yet.

Nancy

garina · Post by **garina** » Sat Jul 16, 2011 7:49 am

Oh Tex, thanks for mentioning that the Asacol contains lactose. My PCP, even before D started, thought I might be intolerant to dairy and suggested I take Lactaid, which I have been doing for some time now. And, I did start using the Silk Almond unsweetened milk, which I love in cereal, but have given up my favorite, which is Cheerios. So, Asacol is out. In checking, I think I am not thorough enough, but I'm working on it.

This morning, I feel brave, so I am putting together ingredients for GF bread made with Bob's Red Mill flours. Might or might not turn out, as I don't have the guar gum as yet. Will give our bread maker a work out.

Amy, I do envy you having done GF for four years now, hard that it is. Here, we only have small Health Food Stores which charge huge prices for GF products. I have found, though, Vitacost, iherb, and Amazon, which do have quite a few products, so they now are my new best friend. Milk is a tough one to put aside, however.

If Pepto turns stool black, I can deal with that, but the tongue...good heavens, it's pink... Well, I will have to learn to deal with that, too. It does sound like a fairly safe drug to bring as a "just in case".

Sara, I also do believe that with having just started this GF diet, it will make a difference, and hopefully, by cruise time, I should do better.

Joe, you brought up a good post, because the fact that doctors are at least aware, is a heads up for all of us. One of them or hopefully more, will research further into MC. I also do wonder about toxins, particularly, bacteria, and yeast, as another post had mentioned. I did read Dr. Mercola's article, even though it was a 2003 article regarding yeast, it made sense.

sarkin · Post by **sarkin** » Sat Jul 16, 2011 8:51 am

Garina,

I hope the Pepto is helpful for you, as it was for me. It doesn't agree with everyone (be attentive for side effects, which I hope you don't have). It only helps with D, of course - for me, the brain fog and fatigue and flu-like aches were horrible in the beginning. But those symptoms do go away when you get the hang of the diet, and get the problem foods out of your system. Sounds like you're off to a great start. I look forward to hearing how your bread turns out,

Sara