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Pegleg84

Member Since 18 Feb 2009
Offline Last Active Oct 20 2014 05:51 AM
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Topics I've Started

Doctors Selling Info On Celiac?

17 September 2014 - 10:22 AM

Hi all,

 

So... not quite sure where to put this but thought I'd bring it up. A gluten-free advocate (she runs a bi-annual gluten-free food/info fair and posts a lot of info and recipes) I follow just posted the debunked "19 cross-reactive foods" list, which we all know has no scientific basis whatsoever. I called her on it, and she said she was surprised since it came from a source she trusted. The source was a Dr Amy Myers' website. Now, I did some googlind and Dr Myers seems to be pretty prominent in the gluten-free info scene, lots of articles in HuffPo, etc etc. However, looking at her website I saw that she is not only posting non-scientific information (with links to 'cross-reactivity testing'), but she is selling online courses on Celiac/gluten-free diet for $100!! (oh, right now its only $49. what a deal). I imagine these "worksheets" have no more information that you can get here, or many other reliable places on the internets, FOR FREE!

 

Anyway, take a look for yourself and tell me this doesn't look sketchy:

http://www.amymyersmd.com/

 

Yeah, I'm sure there's lots of good info here, and maybe she figures since she can't see everyone, selling her services as an online course is better than leaving people out? ?? It seems like a big cash-grab to me. People are gullible. Also, since she's posted misinformation, WHO KNOWS what kind of info is actually in these courses.

Anyway, does anyone know anything about this lady, aside from her writing collumns all over the place? Are there other doctors out there selling their services (and supplements, and god knows what else) like this? Has anyone actually taken any of these courses?

 

I am thoroughly creeped out and a little ticked off at this. Aargh!!!

Opinions and imput encouraged.

 

Thanks!


Helping A Fellow gluten-free Person Out

25 June 2014 - 08:39 AM

Hey guys,

Just wanted to post a "good news" story.

I was in Chicago this past weekend, which is just about one of the best places for Celiacs. I was at a festival all weekend, and brought my own gluten-free beer stash (which I got at the slightly sketchy liquor store down the street. they had a better selection last year, but it did the trick). By Sunday, I had caught the "BBQ flu" as we're calling it and could definitely not handle a beer.

 

Anyway, I was introduced to a friend's wife, who was mentioning that she had trouble finding things to eat sometimes and turned out she also had Celiac! After us chatting about that for a bit, I remembered: "Do you want a beer?" I asked. The look of pure joy on her face was priceless. Made me feel better just to make her happy.

 

Has anyone else had one of those moments, when you find out there's a fellow gluten sufferer and have something to share with them, or vice versa.

 

In any case, I thought I'd mention it, cause it was a very nice moment. Next year at this thing we'll be gluten-free beer-ing it up together!

 

Cheers!


New Research On Ncgs

16 May 2014 - 07:57 AM

Hi Guys,

 

So there's a lively debate going on with some friends over on the Facebooks regarding a recent study that claims to to have shown that Non-Celiac Gluten Sensitivity doesn't actually exist. I see a lot of flaws in this study, and we've been bouncing back and forth the debate between scientific proof and "feeling" better.

 

Anyway, here are links to a few articles on the study. We all know a million-times more about Celiac and Gluten sensitivity than most people. I want to see what we think about it:

(If anyone can get access to the actual study data, that would be very useful)

 

--http://www.realclear..._not_exist.html (this one got the ball rolling)

 

"Analyzing the data, Gibson found that each treatment diet, whether it included gluten or not, prompted subjects to report a worsening of gastrointestinal symptoms to similar degrees. Reported pain, bloating, nausea, and gas all increased over the baseline low-FODMAP diet. Even in the second experiment, when the placebo diet was identical to the baseline diet, subjects reported a worsening of symptoms! The data clearly indicated that a nocebo effect, the same reaction that prompts some people to get sick from wind turbines and wireless internet, was at work here. Patients reported gastrointestinal distress without any apparent physical cause. Gluten wasn't the culprit; the cause was likely psychological. Participants expected the diets to make them sick, and so they did."

 

 

--http://theness.com/n...en-sensitivity/

 

"It is still not clear, in other words, that there is an actual association between consuming gluten and GI symptoms. Individuals may firmly believe that they have such an association, but we know from countless historical examples and experiments that such firm beliefs can form in the absence of a true association.

 

The second possibility that needs to be seriously considered is that in some people who are self-diagnosed with NCGS, they are reacting to something else that is common in gluten-containing foods. If this is the case, then gluten is an innocent bystander. This would be very important to discover, for obvious practical reasons."

 

--http://www.salon.com...oteins_partner/

 

"Now several studies hint that so-called gluten sensitivity might not always be caused by gluten. In some cases, the problem may be entirely different proteins—or even some carbohydrates. “We’re so used to dealing with gluten as the enemy, but it might actually be something else,” says David Sanders, who teaches gastroenterology at the University of Sheffield in England. Joseph Murray, a gastroenterologist at the Mayo Clinic in Rochester, Minn., agrees: “I’m starting to feel more uncomfortable calling it nonceliac gluten sensitivity. I think it might be better to call it nonceliac wheat sensitivity.” "

 

 

So, go at it. I think we can probably tear this study apart. While it might have some truth to it, it seems a little dangerous to suddenly declare that NCGS doesn't exist. Some people might drop the diet completely and cause themselves a lot of unccessary pain. We all know that Celiac/Gluten intolerance  is much more complcated than "eat gluten: feel bad; Stop gluten, feel good." it takes weeks and months and symptoms are different for everyone.

 

Looking forward to a lively debate (or am I preaching to the choir here)

 

Cheers

Peg


Dh Or Tinea?

05 April 2014 - 10:30 PM

Hi all

 

Well, this is the first time I'm posting in the DH forum. I've always been very glad to have avoided DH as a symptom. I remember when my mom first got it when she did her gluten challenge before getting biopsied (she told me, "It's not worth it!)

 

Anyway, long story short, I got glutened a couple weeks ago. Not just cross-contamination but actually eating some barley in soup. Cause I'm an idiot. Don't need to go into details. In any case, I've been relatively ok symptom-wise, but it's definitely been a long haul in healing.

 

Earlier this week I started to get a rash on my elbows, which I figured was just dry skin. Then it got itchy, and yesterday and today it's broken out in what looks to me like tinea (ring worm), which I have had on other parts of my body before. It's round, bumpy on the outside, but unlinke anything else I've had before, it's mirrored on both of my elbows. It's gotten extremely itchy (I'm doing my best not to scratch). My right elbow has turned into a big round itchy bumpy patch. I will try to post some photos tomorrow.

 

In any case, I'm treating it like tinea right now, with antifungal cream.

 

However, I have a few questions:

 

- how long does it usually take for DH to break out after getting glutenered (or does it depend on the person, like with any other symptom?)

- does anyone think it could be DH?

- if it is/could be, should I get it biopsied before it dissapears?

 

Because that's the big question. I've never been officially diagnosed, and IF this is actually DH, then that could give me an official stamp of approval (not that it makes any difference to me). I doubt it's going to spread/get much worse, since I haven't eaten a thing not made in my own kitchen for the past two weeks and won't for a while. I haven't been actually glutened for over a year.

 

Anyway, I'll try to give more details and photos tomorrow, but any opinions would be helpful. If it wasn't on my elbows and basically the same on both sides, I'd just treat it like tinea and be done with it, but the circumstances make me suspicious.

 

thanks a bunch. I'll try not to stratch in the night!

 

Peg


5 Years!

10 March 2014 - 09:17 AM

Just wanted to say that it has now been 5 years since I decided to go gluten free. After months of bloating, weight loss, irritability, anxiety, feeling like crud after anything I ate, I decided that despite the negative blood tests I was sick of it! I told myself I'd try eating gluten-free for a few weeks and see what happened. By the end of week 1 I was already feeling better! I have never had an official diagnosis, but given its prevalence in my family, I have always concidered myself to have Celiac Disease.

 

Fast-foward 5 years, I'm doing 90% better. I picked up some addtional intolerances along the way, but the sacrifice is more than worth it if it keeps me healthy and happy.

 

Thank you all so much for your advice and support over the years, I don't think I'd be in nearly as good a shape without this forum. I've learned so much, and appreciate having a place to vent when things go bad. This is a lifetime commitment, and it can only get better.

 

Hugs to all

 

Peg