Gluten Free Experts: Resources (books, links, providers)

This also talks about infusions and flavorings and then I guess I start realizing I'm wondering how they get that flavor and if it's good for you or NOT.... the local liquor stores are actually talking about gluten free, organics, etc., and the consumer-driven demands for these types of concerns.  So this seems to be the topic de jour!

detnews.com/article/20100121/ENT04/1210307/1424

Mardy's Note: This is no longer a free article; newspapers are moving to a subscription for online model.  Rather than replacing the link with another FREE link, I thought I'd leave this and forewarn people.  The Internet is changing and Lumigrate's had to 'go with the norms' of what the public expects from Internet resources as well, dropping the $20 charge on videos, looking to sponsorships/advertisers but then people suspected if our content was 'honest opinion' or influenced by the $pon$or$.  And we leave 2011 looking at having all that is currently working on Lumigrate as FREE and adding a subscription service for 'special things'.  

Mardy, so glad you mentioned this connection -- the Irish and Celiac Disease...

I have seen addiction listed as a symptom of celiac disease in some other countries' celiac support groups.  It brings me back to the opiate excess theory related to autistics and schizophrenics consuming gluten and casein.  If a person cannot properly digest gluten and casein and the resulting opiate peptides gluteomorphin/gliadorphin and casomorphin leak from their gut, then they may continue to get "hits" from these morphine-like substances.  Okay, so the hits are not the same as actual consumption of alcohol and drugs, but those hits could possibly be the downfall to breaking an addiction. 

Part of rehab usually includes removing any alcohol or drug that might affect the addiction.  What about those people that have tried and tried and tried and cannot break their addiction, even though they diligently removed all alcohol and drugs?  I would love to see research or a study related to removing all sources of gluten from the people who can't break their addiction no matter how hard or how many times they try. 

I know that for me, in the first few years of this diet, as long as I didn't take the first bite of gluten I could resist -- for instance, fresh bakery birthday cake (NOT gluten-free):  if I had even a tiny piece, I wanted to stick my face in the cake and eat the whole thing.  As soon as I had the first bite, I had to have more -- it was easier just to pass on it the first time.  I haven't had a problem with addiction to alcohol or drugs, but it makes me wonder what that type of a hit addicts might get from their food.

Angela, I want to underscore how much I enjoyed your book and that I recommend it to many, many, many people.  I recommend to everyone who has a mouth Jacob Teitelbaum, MDs Beat Sugar Addiction Now! and want to remind everyone to click on the Forums tab and scroll down a bit to where the Lumigrate Bookshelf forum is, as that is where all the books I think people with various concerns might want to have on their shelves if they're "Lumigrate-kinda people".

The simplest way that I've found to suggest people eat in terms of 'theory', not that it's easy to put it into action necessarily, it the caveman, or paleolithic diet.   But for MOST PEOPLE, 'eating paleo' is just too extreme all the time but it makes you really get the basics and concepts down fast.  I mean, if it was here a Looooong time ago and our paleo ancestors ate it, then it's likely going to be understood by our bodies today! 

It's SO simple to learn the paleo diet but that's about all that's easy about it.  One does best eating animal product who are also eating as their ancestors ate.. never-grain-fed is not the norm for meats and poultry, etc.   And it's a transition to get to that for some

And Angela - re: alcohol abuse: some believe 'there's always a blood sugar issue going on'.  

If it helps to share my story as I understand it at least: I thought about the genes I inherited when my health was falling apart in my mid-30s; I was the only one in my family that was not treated for inhaled and ingested allergens, which was IgE 'stuff'.  

BUT my body was having problems, and I realize now that I LISTENED TO MY INNER DOCTOR and asked the neurologist who had done the lumbar puncture after an MRI showed a handfull of lesions in my brain, if, since it wasn't MS (thankfully), if my symptoms of muscle weakness, fatigue, and persistent migraines could be from food allergies.  "Food allergies can cause headaches" was all she was aware of through her allopathic medical training, but at least she validated my theory.  

So off I went, calling back up the acupuncturist I'd STARTED WITH (which for me at that time had not yielded results, and I was really compliant), so I moved onto convenational/allopathic/primary care doctor).  But the issue was that my body was reacting with IgG response, not IgE!  And Western, ConMed did not at that time believe / embrace/ reimburse for IgG food allergy testing so I'd kept 'barking up the wrong tree' when I was referred for IgE allergy work, as I had an IgG response issue! 

But it took me to 1995 to hear about IgG! And I find all the time today that people have not yet heard of it since it is the lesser known/UNconventional information.  Thankfully we have the Internet to balance that out and allow people equal access to medical information today, which is making a tremendous shift in what people are seeking and businesses and providers are doing! 

So yes, it was a shame that I went to be 35 years old and had a MESS of a problems that really affected all aspects of my life at that point, and could have ended a career, easily; it ended a relationship that was dialed in to be the 'one for ever' -- some people sign up for the story book and some people sign up for reality; I didn't have one that was in for reality but he was a good guy nonetheless.  I moved on, he moved on, and a mutual friend realized 'my coworker looks a lot like Mardy, want to meet her?' and they have been together ever since and presumably she's not had any health problems.  (I make this point because it was simply the path of my life to 'keep going' and that was truly as important to my being where I am today as anything! God-forbid I was still in suburbia in Northern Colorado having not had all the lessons since 1996; truly, it is all good, and I am GrateFull!) 

What happened in more detail? When thousands of dollars in MRIs and lumbar punctures found lesions in my brain but no myelin in my spinal fluid, the neurologist and GP/PCP shrugged their shoulders, but fortunately I'd initially turned to acupuncture for advise.  She'd said at the end of that first hour-long initial visit where they feel the many pulses of your body and all that 'different stuff' like looking at your tongue and yada, yada, yada:  'I think you shouldn't be eating as much wheat, so eat less wheat when you can'.  

Which I did, but with no changes in symptoms.  It took total elimination of that/wheat and the more/extremely IgG-reactive dairy (and I also was highly reactive with eggs) to see results.  And they were DRAMATIC and FAST results!  I thought 'maybe in a month I'll feel a little difference (and that will be nice, this is miserable)' but it was like night and day! 

Being in an MRI for a scan of the brain and neck just months before findign out I would benefit from not eating a few major food groups (HAHA, NO problem, right) had a perspective to me because of my time in that MRI room.  Fear is a tremendous motivator.  I knew they'd seen something suspicious because the IV team came and put in a line to throw contrast through the IV fluid while they reshot everything to 'light things up' to see them better.  

Waiting for the vampires to come (the IV team) gave me time and I realize now that in 'foxholes' perhaps I did the 'bargaining' that the legendary Elizabeth Kuber Ross talks about in the grief process.  "Just don't let this be MS and I'll do anything" went through my mind.  

THAT is what made it VERY easy for me to be compliant with making such dramatic changes in my diet in my mid 30s (no wheat or anything that contained it such as vinegar and that's in things such as mustard, etc., dairy, eggs), once I found out through inexpensive IgG testing that I was able to 'turn over' as the stone that I needed to look under simply because I persisted and listened to my gut.   (It was only $500 for the test and the MDs time combined, or thereabouts, and I understand there are other newer, better and cheaper tests today which maybe go off of white blood cell if I heard correctly.) 

It's my personal theory about me, not necessarily about anyone else's 'cause-effect', as there are SO many factors and so many illnesses that manifest from this sort of conflict put upon the body by what we put into our bodies for foods today -- lupus, Alzheimers, Parkinsons, MS, Lewy Bodies Disease/Dementia (which my father died of), RA, diabetes, on and on....  that if I were not to have found out about the wheat/dairy/eggs (IgG allergies) and changed what I was eating, I would likely have eventually had myelin start degenerating and being in the CSFluid and then I would have a diagnosis of MS! Some of my symptoms starting in my 40s were 'Parkinson-like', and I am intrigued by the 'overlapping conditions' concept.  So perhaps look for more about that here on Lumigrate!   

It's hard enough having a diagnosis of fibromyalgia and getting things 'turned around', but at the time Lumigrate launched I really was doing so well many of my providers were saying 'yeah, you don't qualify today as getting a diagnosis' BUT I very rapidly lost some of the ground I'd fought hard to gain when many of the variables of what I was doing and had access to changed.  I went down the drain a LOT, but not like it was in the past, thankfully!  "Live and Learn. Learn and Live Better!" is what I've signed off with for a while now and I think it is so very clear when talking about this topic, certainly! 

 I've really liked a lot of the writers at About.com; their fibromyalgia blogger is good and they have a very solid Gluten-Free Cooking contributor. It is titled "About Gluten-Free Cooking", and it is by Teri Gruss, MS;  I believe I requested that she post on Lumigrate and she responded she was too busy but was appreciative of the invitation. I make a lot of appeals to a lot of people so if I have not remembered that correctly, please understand.   

My one suggestion related to the type of information Teri provides is to realize that when you take the foods that most people like to eat and replace the wheat flour with other flours made from plant-based grains and beans and etc. that don't have gluten in them, you're still not eating like a caveperson and they're often foods that are NOT GOOD with the glycemic index and contribute to health problems.  So, in my opinion, these are a good place 'to start' but it's NOT the 'real deal' for progressive thinking about how to eat well without gluten.  

Having said that, I enjoy Teri's information and looking at what she's pulled together with the e-newsletter; there are few e-newsletters that I REALLY look forward to, and hers is one of them.  Robin Thomas' is another, I'm going to get something over here for you from her and hope she will also bring 'to the table' a nutritionist friend of hers she keeps telling me about who is, like Teri, busy and in demand and has not yet said YES to contributing at Lumigrate. 

Here's what the photo of her and about her in her e-newsletter that just came in today, a day I had a request from someone about gluten-free information and I was reviewing what we had on Lumigrate, as everything always is needing to be kept 'fresh' and things are always changing.  

From Teri Gruss, MS, your Guide to Gluten-Free Cooking Fall is a wonderful time of year to indulge in a warm bowl of creamy homemade gluten-free soup and a slice of spiced quick bread! The good news is that it is so easy to substitute gluten-free starches, like sweet rice flour to create some absolutely delicious, creamy-rich homemade soups.     This newsletter is written by:  Teri Gruss, MS  Gluten-Free Cooking Guide  Email Me | My Blog | My Forum     Sign up for more free newsletters on your favorite topics     Mardy's Note: I hope that I've been respectful of About.com's intention to have people come to their website, am ENCOURAGING people to sign up and follow Teri's and About.com's information - I think they do a wonderful job of finding what 'works' for most people and commend and support them!  I ALSO like to provide options that are geared for those more along to the progressive path as I have said, above, it's a long walk from doing as most people have done/do to what is ideal and we all fall along the continuum somewhere each day.  Here's their Privacy policy link and contact information.   About respects your privacy: Our Privacy Policy  Contact Information: 249 West 17th Street New York, NY, 10011 © 2011 About.com

I'm putting this in here as a 'best I can do for the moment' to be sure people looking here about celiac start looking to Robin Thomas and I'll put it on my request list to her that she come here personally and add something better.  

Mardy's Note: I spoke with her and she recalled having included this in another piece on Lumigrate related to supplements, so for NOW here's a clip about her nutritionist friend which at least gets you a link to how to look at her website of info about foods. AND Robin's going to prepare something more complete and post it and then I will come back and remove this... Robin's previous post exerpt:

"I am friends with a registered dietician who works exclusively with food sensitivity testing and dietary counseling through a program called LEAP  www.leapdiet.com  She has huge success with her clients eliminating symptoms of fibromyalgia, migraine, IBS, as well as stubborn weight control and eczema.  She utilizes a variety of methods to help patients identify their trigger foods, including food history, Mediator Release Testing (MRT) and elimination diets.   She works in a Holistic Medical Center that offers both Juice Plus and USANA products.  Many of her clients, though, find out that they are reactive to many of the fruits and vegetables used in Juice Plus products.   Since there is no way to determine specific ingredients of Juice Plus products (as it is a mixture of foods)  they cannot take the Juice Plus without reacting negatively.   So... there is a down side to a "whole food" supplement." 

Robin recently had written about her knee pain and what she is using for it; I have thoroughly enjoyed getting to know Robin and her non 'salesy' way of talking up the supplements she whole heartedly believes in as the foundational supplements along with a really good diet.  She has said on Lumigrate that USANA's target market is what the average person who is active and with overall wellness needs; there are many additional things she purchases for her family from other manufacturers for specific needs.  

I like USANA's simplicity and their extremely high status in rankings for quality and assurance and have increasingly been incorporating them into my regimen.  Robin's background is in science and her work was in medical research, before she had to transition to working from home due to a son who had special needs.  She puts it in her scheduler to call her clients before their autoship is due and will interface with the program for the client in order to postpone if needed; this was a suprise to her that I would be one of those 'high needs' clients as she knows I work my way around Lumigrate with some competence.  But when it comes to the mental thing of time interfacing with ordering things online, I'm really remiss.  And she is just SO knowledgeable.  (I also use an equal amount of supplements from ITC Compounding and Wellness Pharmacy, as they have good supplements at extremely good prices and this way I am covering more bases for less money.  But people tease me about how I am with money -- I'm always looking for deals and how to work things to be the most advantageous to me in the long run.  Everyone's different; I know that if I talk with someone about supplements I give them BOTH Robin's information and ITCs and then also Natural Grocers/Vitamin Cottage, which I will post about in the next topic down/separately.  

 www.lumigrate.com/forum/turmeric-pain

Natural Grocers is the NEW NAME for what we Coloradoans have a hard time not calling "Vitamin Cottage" anymore.  Founded by a woman in the 1950s in west Denver, literally within a half an hour's drive from where I grew up in the mountains west of Denver where the show South Park was 'created' in the minds of two of my school mates in years after they'd gone on to become young adults, Natural Grocers is essentially Colorado's version of Whole Foods or Trader Joe's, in a way.  However, they have a VERY different history.  

Their founder started just with vitamins as they were called back then, not 'supplements', and I have even heard that it was door-to-door initially. Then they expanded into some foods but not so much produce, and now they're like a miniature but higher quality version of Whole Foods.  She's one of those  people that I so wish I'd just met once so I could say I had! She just was an amazing woman I've heard from every angle there is.  One of my chiropractors here in Grand Junction grew up nearby their first/main store and shopped there with his family/parents in the days she was starting things up.  

It's so cool to talk with him about that; everyone has a story and his was also riddled with learning disabilities and being cured of them via chiropractics in young adulthood, allowing him to return and be successful at college.  I went to vision therapy and other specialists to learn as much about my learning differences and strategies to counteract them, and got things fixed and figured out well enough I was able to finally become an occupational therapist.  It was when I moved to Denver for internships I discovered Vitamin Cottage, so I plugged into them in 1996, decades after they'd gotten going.  

I've met with one of their corporate directors, almost two years ago now, right when they were rolling in the new name and she said it was related to the new mandates coming down the pike about supplements and the growing demands for organic foods and the public's growing appreciation, even in a time of a troubled economy, of putting their money 'where their mouth is eating'.  She initially was going to only give me two minutes of time and spent twenty, interviewing me hard about 'ethics' and then leaving the door open for us to connect again in the future.  A compliment! I think she had some interest since, as you'll see at this link, I put a link to them from the very beginning.  This link will take you to the Products tab just as if you clicked on it/above and you'll see there is a short list and Vitamin Cottage has a hyperlink.  Please take a minute to go look at their website and then come back here! www.lumigrate.com/page/products. 

Note from 2014: VC/NG have different website information now and currently are not doing the online ordering. I suggest you continue reading about Robin Thomas and USANA, and then look at information we brought to our Forum are in 2011 and 2012 from ITC Pharmacy, which is a compounding and natural wellness pharmacy that serves all the US and beyond and has experts on hand to answer questions via email and telephone (and Skype perhaps too -- they got that stuff installed in order to record a couple of podcasts with us, so you can listen at iTune (Lumigrate has a channel) or catch them from our podcast forum at the VERY top of the forum list (at least that's where they are currently located.) 

I've not taken her up on that yet, because I knew that last year they were expanding into other states and starting a large number of stores up; I felt their attention was not going to be on a small Internet-based business and we needed to get our hits up and our experts more established and stabilized.  

Websites are like children, I'm finding, they are born/launch, they don't do a whole lot at first except are a novelty and 'pretty to look at' and then they start crawling.  Then toddling and stumbling and wobbling around and having lots of lesson and then they get their legs under them and run.  We're right at that point and it's really right 'on target'. 

If you're lucky enough to live near one of their stores, they have some very well educated people typically helping you select things and are REALLY available. And each store has a nutrition consultant that meets with people for no charge, you just need to appoint ahead of time.  The Kroger stores (a large 'supermarket') is now trying to compete with the model Natural Grocers/Vitamin Cottage has set, they do that so well.  I've found a LOT of tricks from those people over the years; I used to live within blocks of their 'mothership store' in west Denver -- just after I found out I had fibromyalgia is when I moved there.  

HOWEVER, if a person orders online, (as my experience has been as of my writing this in the fall of 2011) they don't get the expertise if they have a question that Robin or Gary and Allan (the co-presidents of ITC) provide.  But I do get my magnesium/malic acid 'add-on' that is related to the unique muscle needs someone with FMS can benefit from via Vitamin Cottage/Natural Grocers.  

A link to them is on our Products tab at Lumigrate and has been there since we launched!  They've even changed their name from VC to NG as part of a rebranding as they prepare for the changing market related to supplements in the United States and what people are looking for, and expanded their foods.  Many are gluten-free! I am not gluten-sensitive but I have an IgG allergy / reaction in my body to wheat so I purchase my rice pasta from them.  They also have a great selection of cat foods that are high quality so once a month or so I go there and stock up AND relish in their amazing fresh produce.  Last night I shopped late at night so went to the Kroger that is competing with them; they basically leave the doors open and the lights off so us night owls can do our shopping while the night employees reorganize the store shelves, do the floors, etc.  I like it because the lights are mostly out as my brain does not like fluorescent lights nor the music and overhead paging that goes on in a typical store during normal business hours.  However, going to Natural Grocers is like a social event for progressive eaters -- you run into all the 'in the know' people there.  

NOTE about what you find at Lumigrate's Products tab: Since it was a brand new website, we had to use Amazon as our source for suggesting products -- 1) everyone knows and trusts it and 2) they have EVERYTHING under the sun.  So the providers who did the videos and I sat down very fast and went over the products that are on Amazon that we thought were in line with what we're used to buying.  But we all shopped at Vitamin Cottage so we were basically finding the things on Amazon that we knew from Vitamin Cottage having gone to the work all these years of sorting through products to carry and only carrying the best and the best sellers.  So you can go pop onto our products tab or look at the products that are listed with the videos (so the video by Dr Lepisto on food allergies for instance), and see very easily what products Dr Lepisto thought were good things to go along with his food allergies video.  You don't have to order from Amazon, you can find the same item at Vitamin Cottage/Natural Grocer's website OR whatever store you chose to shop at online or in your community.  

I hope this helps direct people to information, products and fills in some history of Lumigrate for those who are interested enough to read. It's a work in progress and I will hope we will be upgrading many of these pieces here in the near future and bringing you official Natural Grocers information, Robin Thomas' input about food allergies/celiac/special diets, and any experts she might guide to help Lumigrate's dietary-seeking followers get OUR BEST picks for YOU!  

Hello - I was directed by Robin Thomas to please chime in with your discussion.  I find this area to be the most interesting on how foods can make us sick.  

The western trained doctors are not typically taught about this process so they do not understand how that could happen.  As Adbarakat stated about the "leaky gut", which is the way MD's refer to it but they dispense meds which have no effect.  

If it's a dietary problem then diet should be the solution; however the problem lies in determining which foods are causing the problems.  Typical allergic responses (type I) that happened tend to show symptoms in one hour which can cause a fatal outcome; not good.  Fortunately this occurs in less than 2% of the population.  

However a type IV allergic response is a delayed response from between 4 and 72 hours.  This occurs in over 30% of our population.  This is what makes it so difficult for the doctors to determine which foods are causing the problems.  

It is true that 80% of the immune system is in the gut, however it's the chemicals being released causing the inflammation in the joints, gut, brain, muscles.  Those chemicals cause symptoms in a delayed response so people believe its what they just ate.  But as you can see, that is not the case, it was something long beforehand.

Food sensitivity is a not easy to determine without specific testing due to the delayed reactions.  People that have celiac disease have an inherited disorder but usually it's not always just gluten and these clients have multiple food sensitivities due to a poor immune system.

Hi Julianne, Robin's told me so much about you and how busy you've been, so I really THANK YOU for taking the time to register and add to the discussion here.  I've taken a peek at your website and will get that added to your user account so it stamps.  I'm ready to watch something on OWN right now so I want to participate in this 'class' they're doing.  Tomorrow/Tuesday, I'll check in with you.  I understand Robin's having some much needed RnR so we'll look forward to her return and we'll 'complete the loop'.  This is very helpful to all who read, and it adds up to making a healthy public that is true improvement and awareness.  We all contribute to the information but when it comes to expertise about foods and nutrition, I definitely look to those who are valid, progressive and we try to make this very FUN overall and streamline learning for people.  ~~ Mardy 

Robin Thomas had posted a link on facebook about a piece by one of her local friends with a blog related to her learning she had celiac.  It was very well done; her focus is local to her area so I've removed the two resources that were part of the list.  It's definitely worth going and reading.  I particularly like the way she describes 'brain fog' AND that she correctly called it 'Down syndrome' -- that was beat into me in college the same way "a lot" was in high school.  largo.patch.com/articles/gluten-free-eating-is-more-than-celebrity-diet-trend.  So, I like this a lot! And since we might alot ourselves time to learning about gluten free, I'm trying to streamline the process for YOU if you're reading!  ~~ Mardy   

THANKS to Robin Thomas for having such good people she networks with, getting GRATE things she's sorting through and bringing out to facebook for catching and posting. 

 The following are common symptoms of celiac disease:

• Abdominal cramping
• Intestinal gas
• Distention and bloating of the stomach
• Chronic diarrhea or constipation (or both)
• Unexplained anemia due to folic acid, B12 or iron deficiency (or a combination of all)
• Unexplained weight loss with large appetite
• Unexplained weight gain

Other symptoms can include osteopenia, osteoporosis, bone or joint pain, fatigue, weakness, lack of energy, depression, mouth ulcers, tingling or numbness in hands or feet and migraine headaches.

Resources for gluten-free living: 

• Celiac Disease Foundation 
• The National Foundation for Celiac Awareness
• American Celiac Disease Alliance
• The National Foundation for Celiac Disease Awareness (on Facebook)
• Federal Drug Administration
• Gluten Freely (General Mills' resource for information, foods and recipes)
• Gluten Free: Celiac Forum (for celiacs and people with gluten or wheat intolerance)
  
• Udi's Gluten Free on Facebook
• Gluten Free on a Shoestring (Facebook page)
• Gluten Free Ideas (Facebook page)