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color_me_confused

Member Since 19 Mar 2011
Offline Last Active May 23 2012 06:03 PM
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#723482 What If A Gluten Free Diet Is Not Strictly Followed?

Posted by color_me_confused on 17 August 2011 - 08:05 AM

Hello everyone. My husband was recently dx w/ Celiacs and to be honest, a gluten free diet is probably not realistic.


Of course it is realistic. It will take self-education, effort, lots of mistakes, and lots of energy but you and he can do it. Oh, and prepare to spend more $ on food :angry:
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#710578 Rice Krispie Treat Report

Posted by color_me_confused on 20 June 2011 - 07:11 PM

I made a batch of Rice Krispie treats using the new gluten free RK cereal. I used Kraft Jet-Puffed marshmallows. The results are good. The gluten-free RK are a little less crispy and a little less sweet, made with brown rice & sugar, instead of white rice, malt, and sugar.

My older son begrudgingly tried some and declared them to be "fine" (a major endorsement on his part), my wife liked them also. As this was one of my favorite childhood treats I opted for 1/3 of the pan for breakfast on Father's Day. B)
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#707367 Celiac Fashion Wear

Posted by color_me_confused on 09 June 2011 - 08:19 PM

I found this over on cafepress: http://www.cafepress...shirt,230683167
While I'm probably not going to wear that, I might by this mug that says "Gluten is the enemy":
http://www.cafepress...y_mug,354150529
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#700921 Celiac Vaccine Anyone?

Posted by color_me_confused on 19 May 2011 - 08:10 PM

Well I had a little more time today to look at the article. First off they only used 34 people for the study and a fairly high percentage of those had side effects. Also they appear to only be looking at GI symptoms so who knows what is going on in the rest of the body systems. What exactly are they vaccinating against? Celiac is autoimmune it is not like smallpox or polio it is a genetic difference. I think they are misusing the term vaccine it seems to me this is more of a treatment that they will look to sell to folks with celiac associated genes before symptoms arise.


I'm not a medical researcher but do work on medical devices sometimes and I know a lot of medical researchers. Researchers are almost always principally motivated by the scientific and medical challenges along with the prospect of doing good in the world. Sure, some might get rich here and there but the vast majority never will. It looks like the Nexvac2 would work like an allergy shot - as long as you keep taking it the idea is the celiac gluten response would be suppressed. Would I take it? as a newly diagnosed person I would be hesitant. Maybe as a hedge against cross contamination but I wouldn't want to rely on an expensive shot to be healthy. Unlike other autoimmune problems (lupus, diabetes, etc) there's a clear solution: no gluten!

You can read the company's summary here: http://www.nexpep.co...ne/Nexvax2.aspx

They did a Phase I trial. The next step will be a Phase IIa trial which will determine safe dosing ranges. That's followed by a IIb trial which determines if the safe dosing has the desired effect. A wider range of side effects should be considered in the Ph II testing.

If all that works than they'll get a massive amount of funding from a big Pharma co. and go into a Ph III trial which would involve a lot of patients and take a very long time. Nexpep claims it'll be on the market in 2017, that seems optimistic to me.

As for the profit motive: let's see...1% of the US population is 3 million people. Weekly or monthly doses, call it 40 doses each annually. 120 million total doses annually, at what, $50 each?? FOR LIFE. Hey that's $6 billion in revenue for 25 years until the patent expires! There's the motivation for the business and finance people. Actually that could be such a huge moneymaker that I'd be very nervous about trying this drug until it's been on the market for many years.

You want to really see red go look up Denise Faustman, who is working to cure Type I diabetes with an inexpensive generic drug used to treat tuberculosis and some forms of cancer. No NIH or other federal $, the JDRF attacked her research (until they sponsored 3 rival researchers, who all confirmed her results!), no drug companies support it. Curing Type I would ruin a lot of investment in insulin production...
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#699975 Lost 4 Pounds Since Going Gluten-Free

Posted by color_me_confused on 16 May 2011 - 01:01 PM

Does anyone know of the reasons why dropping gluten from our diet has such a significant effect on our weight?


I don't have any idea. I just know that I'm dropping about 2 lbs per week since going gluten-free and am about to need new pants and more holes in my belt. Over the past 10 years or so I've had a terrible time losing weight when really trying at various times - even careful calorie counting, complete with a food scale, a food diary, and lots of exercise didn't do it. Also my body fat % is down 1.5%, after not budging for years.

Can't say I'm complaining though. Another 10 lbs and I'll be at what I weighed at college graduation 15 years ago.
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#687718 New At This, And A Little Frightened To Eat

Posted by color_me_confused on 29 March 2011 - 07:53 AM

Possibly. It's more a matter of when and where than cost. How quick does your body stop producing antibodies, do you know? If I get tested in the next two weeks, even if I quit eating gluten, would I still have antibodies in my system? I'm clinging to passing grades by the skin of my teeth, due to a combination of factors (Depression, Irilan's syndrome, ADD) and going off gluten is suppose to help with the depression and ADD. I really need that help. I'd like to start immediately, if that's possible, but on the other hand, the gluten challenge sounds godawful. I'd rather take a bad semester than permanent damage to my intestines.


I have adult ADD. Going gluten-free definitely did relieve some level of brain fog and distractibility after just a few days, although I definitely, 100%, still have ADD. The greater energy throughout the day and reduced caffeine intake also had a positive cognitive effect. I'm in the process of working w/ a psychiatrist on medication to help me out...I've known since my teens that I've had this issue my whole life, I am very happy (and a little regretful) to be doing something about it now in my 30's.

You know, you can always take a semester off, depending on your university's policies and financial aid situation. Back when I was doing some college-level teaching I had two students do just that to deal with major life issues (like the death of a parent in one case, a cancer diagnosis in another), and they came back the following semester and picked up where they left off. Well to be clear I met them as they were making up for that missed semester via summer class. There were no grade consequences since the "incompletes" were just replaced by the classes they re-took.
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#685106 Positive Biopsy, Negative Bloodwork?

Posted by color_me_confused on 19 March 2011 - 09:15 PM

I found this interesting article on this very site:
http://www.celiac.co...ophy/Page1.html

Out of those studied, 71% had total villous atrophy, and 29% had partial villous atrophy. Serological results indicated that only 77% of those with total and 33% of those with partial villous atrophy actually tested positive for celiac disease, and it did not matter whether the patients presented with classical or silent symptoms. All patients who were positive for anti-tissue transglutaminase had total villous atrophy. The researchers conclude:

seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature.


interesting. I hate waiting for medical news.
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