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Member Since 23 Sep 2009
Offline Last Active Mar 15 2013 08:44 AM

#803720 What Do You All Think About Idea That All Grains Must Go For Many To Heal?

Posted by on 15 June 2012 - 11:55 AM

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

Currently the research says celiac gluten intolerance is related specifically to certain grains including wheat, rye, barley, spelt (and a few others), but not to other grains such as corn, rice, or millet. As far as I know, there is no scientific research pinpointing other grains as culprit in celiac disease gluten intolerance.

However, I think recovery and tolerance of non-gluten grains likely depends on a person's overall state of health. There can be a lot more than just the issue of gluten intolerance when someone has celiac disease - there can be concomitant issues of microbial dysbiosis or other inflammatory or allergic conditions causing additional digestive problems that may interfere with healing. Any chronic inflammation will interfere with healing. Period. It is a very complex issue involving food biochemistry, immunology and microbiology and will certainly not be clarified until much more research is done, especially in the field of bioinformatics.
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#803715 Gluten In Other Products Besides Food?

Posted by on 15 June 2012 - 11:29 AM

Sorry.....unless you are eating soap, it's not an issue. I have yet to see any Celiac organization warn about dishwasher soap and there should not be any soap residue on plates from hand washing or running through a dishwasher. If there is, then better rinsing needs to be done. It is a common sense issue. However, if people want to believe that you can be glutened from dish soap, that's their choice.

I was also skeletal when diagnosed so I was in the same place as you. The company that sells that particular soap does not need to put "gluten" on the label as who would be eating soap? They are not required to label it as such.

Wow. This response is just inconsiderate and downright vicious. I explained what happened to me and then you attack my integrity? Why? I went through hell, my other family member went through a chain reaction of health issues and HAS NOT recovered - he is still going through hell, and you tell me this is either an in-your-head "if you want to believe it that's your choice" or I must have been washing dishes poorly and "eating soap"?

Please, go use this soap exclusively for washing dishes for all your meals, home prepared 3-4 times a day, all cups, spoons, forks, knives if you feel there is ZERO RISK of any contamination. This is not a one time exposure to soap with gluten but a 3-month constant exposure. It's bad enough to have to deal with CC issues from foods. The company SHOULD put wheat on their label if they are using it as an ingredient; it is deceptive not to. And on a side thought, based on this logic, what about someone who gets an anaphylactic reaction to wheat - as long as dishes are washed well, is it safe use dish soaps with wheat ingredients? I would think not.
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#801556 Gluten In Other Products Besides Food?

Posted by on 08 June 2012 - 12:25 AM

I have never seen any dish washing soap that contained gluten. They may exist but I have never seen one. Also, do you not rinse your dishes well after washing or do you let the soap dry on the dish? That would be the only issue with dish washing detergent being a problem for a Celiac AND it would have to contain gluten.

This is a common sense issue more than anything else. Dish washing detergents for hand washing of dishes or the dishwasher are just not a concern, unless you do the above.

This is not a common sense issue. You would think it is but it's not. No one really suspects dish soap, and if gluten is in the dish soap, every day exposure WILL happen. I want people to be aware of this because I don't want anyone else to go through what I did because of dish soap.

The "cross contamination" issue that caused me to become extremely ill and lose over 40 lbs nearly three years ago was from dish washing soap. I am not the only person in my household with celiac disease, and another family member became even more ill than I did. At the time we knew something was wrong, but couldn't figure out what it was other than it felt like we were being poisoned, but there was NO gluten in any of the foods we were eating. We cut our diet cut down to nothing but fresh bananas, olive oil, and fresh meat at one point, and STILL weight loss, classic digestive symptoms, and worse. I was losing weight at 3-5 lbs a week, nonstop. This went on for almost 3 months until I was skeletal. Then I started going through all of our non-food products. The brand of dish washing soap we had switched to 3 months prior, and had been using exclusively for all those three months, listed plant protein on the label - when I looked up the ingredients on the company's online website - I discovered that the plant protein was sourced from wheat gluten. I don't know if the company has since changed their product label to list "gluten" as an ingredient instead of "plant protein" but I sure as heck hope they have.

http://www.ecover.co...hing Liquid.htm

After the dish soap and all dish scrubs were replaced, the weight loss stopped. This 3-month nightmare took me nearly a year to recover from, and frankly, based on the way I have to eat now to feel "normal," I would say I have not truly recovered.

I wash ALL my dishes well and rinse in hot water until they are squeaky clean. There is never any visible soap residue on any of the dishes. Traces of the gluten were somehow getting into our food.

The concern is VERY real.
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#800984 Doctors

Posted by on 05 June 2012 - 04:51 PM

Many of you know of my troubles with a doctor who was filling in for my regular GP, that told me I was bulemic, anorexic, etc.

Well I went to see my GP who was back from a well-deserved (IMO) holiday to Australia. She said that I looked better, and I told how well I felt since going gluten-free. I told her about how I have been regularly "going", and how my brain fog has gone, I'm more energetic, less nausea, no more fatigue, and though I do have my bad days I am feeling better overall. The response was not what I expected. She must have been talking to the fill-in.

She told me I am not a coeliac, and asked me if this is an "obsession" I'm going through, because I used to have OCD which I still do a wee bit, but have overall conquered-on my own.

I'm of the view that many doctors end up doing more harm than good. Iatrogenic illness due to mistreatment and misdiagnosis is also rampant but largely unrecognized due to the public's ignorance of medical and biological sciences. Not going into detail because it's too much of a rabbit hole to get into.

I was diagnosed with celiac disease about 10 years ago. About four years ago, when I started rapidly losing weight, I went to my GP, who accused me of being anorexic. She knew about the diagnosis of celiac, she knew I was coming to her concerned about sudden and rapid weight loss, yet she was adamantly positive I was anorexic, not eating, and lying about it. Obviously, she's not my GP anymore. The weight loss ended up being from CC of gluten but I didn't find the source of it until losing over 40 lbs and 3 months later.

Sometimes you have to listen to your gut feeling, not someone with a license to diagnose.
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#797516 Immune System Issues

Posted by on 22 May 2012 - 10:09 AM

So I've been gluten-free for a year and a half, but have been on gluten for the past month of so as part of a diagnosis trial. In January, I noticed a boil on the lower part of my right leg that never fully healed, and resisted two courses of doxycycline. I saw a dermatologist this week, and she biopsied/cultured it, and barring anything that comes back on the culture/surface test, she thinks it's an atypical mycobacterial infection. She says she sees these infections about once a year (so fairly infrequently) and that they take some time to cure. I did some of my own research (a semi-dangerous idea) and what little resources out there told me that it usually crops up in people who have AIDS or have a compromised immune system in general. I don't have AIDS, so is it reasonable for me to speculate that I may have some sort of immune system problem? I've always been highly prone to infections...for example, when my friends and I go tubing, I ALWAYS end up with eye and ear infections, and if a bug goes around, I usually get it. The one backpacking trip I've been on, the entire group was fine and I contracted staph.

Anyway, any thoughts? What sort of foods/supplements do you guys recommend to boost immune systems? Thanks!

Okay, I'm going to clarify this for you so you don't have to worry so much. Atypical Mycobacterial infection as a general term just means non-Tuberculosis Mycobacteria. You have probably heard of Tuberculosis, well, the full name for the bacteria that causes TB, both genus and species is: Mycobacterium tuberculosis. M. bovis can also cause TB. However, atypical Mycobacterium do not cause TB. There are a few species that may cause tuberculosis-like disease, but this is rare, and only occurs in the severely immunocompromised***.

It must be understood, however, that there are many different types of Mycobacteria species out there, most of which are harmless and ubiquitous in the soil and environment. Sometimes, healthy individuals can contract a type of skin lesion if opportunistic conditions arise; for example, Mycobacterium fortuitum is classically associated with skin lesions in a condition called furunculosis. There is a case study from back about 10 or so years ago where there was an outbreak from foot baths at a nail salon in California. So it happens, and does not necessarily indicate any fault in one's immune system.

Furthermore, atypical mycobacterial infections in AIDS patients is something completely different! It is referring to MAC (Mycobacterium avium complex) which may cause a severe intestinal and sometimes systemic disease in severely immunocompromised individuals, specifically those with extremely weak cell mediated immunity & critically low CD4 count. This specific type of "weakened immunity" is associated with strong immunosupression - ***long-term immunosupressant medication therapy, late stage AIDS, severe and protracted infection, genetic defects in cellular immunity, immune cancers, and chemotherapy.
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