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» LymeNet Flash » Questions and Discussion » Medical Questions » Gluten Intolerance and Lyme-(very) important?

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Author Topic: Gluten Intolerance and Lyme-(very) important?
w0tm
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As some of you remember, I began a thread last month that has been condensed here:
web page

My LLMD is one of few doctors who also does active Lyme research. She told me a month ago she was suspecting those with Lyme MAY be more affected by gluten then the general population (about 3%). I was among the first patients in her study group. She also now sees non-Lyme patients. Using the gluten test shown in an earlier post I tested 850% over normal for gluten intolerance! Of 19 other patients one patient is 4,000% over normal. BTW - nowhere near the very serious Celiac disease that can be fatal.

I said last month she said "it appears over 50% of those with DEFINITE Lyme are gluten intolerant".

I saw her again yesterday. Much progress! She has completed her study of all 200 of her Lyme patients. Her seven doctor practice is now two doctors due to what is coming with the new health care laws - she told me (please, no messages - three MD - older than she is and all wealthy - cousins of mine all retired 1/1/2013 citing these laws as the only reason for retiring early. All in good health - they had each planned to work their entire lives. One is (was) a world famous doctor/researcher in cancer in children having MANY medical patents and discoveries to his name (WHAT a loss to thousands of children with cancer now or who will acquire it in the future!).

I only said this to add that she took over ALL of their patients (almost 1,000) very few with Lyme so she had a reference non-Lyme group to compare to. All 1,000 were tested for gluten intolerance. Three percent! Few of these non-Lyme infected patients have ANY gluten intolerance and even the 3% the intolerance is all minor to not noticeable.

Her now completed study shows "over 75%" of her 200 Lyme infected patients are almost all significantly gluten intolerant. Newer ones to a lesser extent but not many. Other LLMDs doing the same with their patients to assist her in her study said ALL reported similar results. A total of over 2,000 Lyme infected patients!

She said simply removing gluten from the diets of her patients showed remarkable results in over 95% of the "over 75%" (the about 25% were almost all recently infected with Lyme).

She added "I had all 200 on antibiotics (as you know, long-term antibiotics is the main reason the AMA fights the very existence of Lyme and some doctors have lost their medical licenses). The DEA who hassles her and most LLMDs is VERY happy with her (she said). She only had to put 20 back on antibiotics.

She spoke with well known and credentialed doctors and heads of medicine in "name school" universities and well known medical hospitals (you'd recognize all of the names). After reviewing her findings, several said (she told me) "this may be the most important discovery in Lyme in 20 years - maybe ever". She said she was in shock for days.

Even though it's rare for an unknown doctor to be accepted for publication by such journals as NE Journal of Medicine, JAMA, etc. more than a few of those she spoke to and shared her study with are making sure her article WILL receive a good reception and will appear as soon ASAP in one, or more, of the top medical journals. She is personally "beside herself to potentially changing from an essentially unknown 35 year-old doctor to (possibly) being "nationally published" and then presenting her paper before hundreds of "high level" doctors at an AMA convention or the like (several VERY well known famous doctors are working on making this happen right now).

She asked that I help her by spreading this potentially major Lyme news to others on the Internet (this post). I ask that readers spread this to others (are there other sites where this should also appear?).

When it does appear in a major medical journal I will post the information here. Even her assistant is writing a paper (from the viewpoint of a nurse assistant helping in this -probably- important research. Her nursing paper has already been accepted for publication in the primary journal of nursing in America (sorry, I don't know the name). When published I will post the information here.

Sorry this is so long but I couldn't find anything to cut.

Major question: does Lyme cause gluten intolerance or are people who are gluten intolerant more prone to acquiring Lyme? Her response: "I'm working on it". She is methodical and dogged in her research. In god health at her age she is able to handle the 16+ hour seven days a week workload this has caused her.

I'll post again but only when I have more to add that is important. With "over 75%" gluten intolerant (and closer to 100% for those who have had Lyme for over ten years, like me, - she's still figuring out a percentage that is more than a guess).

IF this applies to you, if I was you, I would have this gluten test done ASAP. If difficult, you can just cut out ALL gluten for five days (the effects do not take long - I felt MUCH better within two days and 98% healthy within a week - up from 30% plus no more antibiotics. My appetite has returned. I eat 100% more now (normal diet except gluten-free) yet I've lost 12 pounds in a month!

Different topic but also consider "Wilson's Syndrome". I've written about this here but not for years. web page My body had dropped to 93 degrees and my pH measured just over 5.0. I was VERY toxic. Metabolism was 5% of normal. I gained 50 pounds while eating 50% as much as normal. A simple thermometer and pH strips (write me for strips I prefer) will indicate if you have this illness as well. Most people who have had Lyme for more than ten years their immune system "gives up" and "T3" drops quite low causing the onset of Wilson's syndrome. Simple to suppress and return your body to "regular metabolism". My weight dropped the 50 pounds I had added (on a starvation diet!) and I felt so much better at 98.6 and my pH at 6.5! Treatment is taking pharmaceutical grade T3 for a few months. Cheap - easy. Cheap to test for "WS" yourself.

Lymenet helped me so so much during my worst period with Lyme when I was essentially bed ridden. I owe so much to all of you. Thank you! I hope this information is "life changing" for some of you! I know it has been for me!

As has been said, the road to still having Lyme BUT regaining your life is like pealing an onion - you keep pealing until the last peal is off and you FINALLY "have your life back!". My "Lyme journey" exactly.

I am now sorry I sold my companies and retired. I may now "un-retire" and return to working 60 hour weeks as I did for 40 years. In six weeks I've gone from always being exhausted, hurting and feeling terrible to FEELING GREAT! May the same happen to you! GOOD LUCK!
Best regards,
Gary (w0tm - screen name - the 0 is a zero).

Posts: 133 | From Shawnee, KS | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I hope more here will listen. Many are already gluten free .. and some aren't willing to try it.

The key is going COMPLETELY off of gluten when trying it.**

Thanks, Gary!

**identify those hidden sources of gluten!**

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
Completely free means to know that even some "gluten free" foods in a restaurant or deli may not really GF at all - unless made in a certified GF work space by specially trained staff in "GF clothes", too.

Too many places are jumping on the GF wagon and blowing their horn but not delivering safe foods. I just found out that may natural foods market deli has been noting some GF deli options but their kitchen has wheat flour flying all over it as they make their own breads there, too.
-

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MichaelTampa
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There are several gluten allergy tests out there. I've had a few done myself. This sounds like significant information, but hard to really pursue it seriously without knowing what test she was using. Could you post that?
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Ellen101
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I jut had testing done that showed I was allergic to gluten. Is there a difference between allergic and intolerant? I also would be interested in knowing which test she used.

I have to say I'm finding gluten free to be extremely difficult. Probably because I also need to avoid cows milk, eggs and sugar.....

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girl
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You have to do your homework when it comes to this. Wheat and gluten are in salad dressings, soups, soy sauce, some processed meats and pretty much any isle on the grocery store - also lotions and shampoos.

Just because something says it is gluten free does not mean it is wheat free and wheat is very destructive, too. (I think it has over 10,000 proteins other than gluten and gliadin.)

Plus, some of those "gluten free foods" contain other bad starches like potato starch, tapioca starch, etc. which may be even worse than gluten as far as the blood sugar is concerned.

I think wheat/gluten free is easy once you put your mind to it and learn what you can and can't have. We just mainly do whole meats, steak, chicken, seafood, and then stick to the produce section - and use a lot of single ingredient foods.

Once you get off gluten/wheat and sugar you feel *a lot* better and do not feel hungry as often.

As far as the difference between allergic and intolerant, I'm not sure, but I bet you could find a ton of answers in the "wheat belly blog."

Anyone who is sick has no business eating wheat.

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Lymetoo
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Go to www.celiac.com for lists of OK and not-OK foods .. esp gives info on what may be hidden in salad dressings. soy sauce, etc like "girl" said above.

Ellen.. I never heard the term "allergy" when speaking of gluten so I don't know how to answer your question.

as for diet.. just eat vegetables and proteins .. keep it simple

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95326 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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The test Gary mentions is this:

"Test name: Gluten Allergen -- Lab: Immunocorp. Immunocorp Web site shows they are mfr. Suggest you e-mail them and ask re test.

Gluten allergen laboratory

Using Google shows other labs who also do this test. Good luck!"

--------------------
--Lymetutu--
Opinions, not medical advice!

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Ellen101
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quote:
Originally posted by Lymetoo:
Go to www.celiac.com for lists of OK and not-OK foods .. esp gives info on what may be hidden in salad dressings. soy sauce, etc like "girl" said above.

Ellen.. I never heard the term "allergy" when speaking of gluten so I don't know how to answer your question.

as for diet.. just eat vegetables and proteins .. keep it simple

So now I'm confused as well....my LLNP ordered food allergy testing and gluten was high???
I just found this site which explains the difference http://www.the-gluten-free-chef.com/gluten-allergy.html

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Lymetoo
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Can't get the link to open up.

Could be your LLNP ordered allergy testing AND a gluten sensitivity test??

--------------------
--Lymetutu--
Opinions, not medical advice!

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Catgirl
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It is simply amazing how much gluten plays a role in lyme. I think genetically modified wheat has and is reeking havoc on everyone, and plays a much bigger part in it all.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Lymetoo
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Amen, Catgirl!

--------------------
--Lymetutu--
Opinions, not medical advice!

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girl
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Technically, wheat is not GMO, it's hybridized.
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kimmie
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Yep. Going gluten free since metametrix testing showed high antibodies to gluten has changed my life for the better.

Enterolabs has a good gluten intolerance test for $99 no doctors order needed.

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timaca
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Infections can affect the gut lining as can antibiotics. Hence, food intolerance can develop to many foods (not just gluten) if you have chronic infections or have taken antibiotics.

I think if you want to explore food intolerance that these books may be of help to you (along with your doctor's help of course): http://www.amazon.com/Dealing-Food-Allergies-Practical-Detecting/dp/092352164X

http://www.amazon.com/Food-Allergies-Intolerance-Identification-Treatment/dp/0892818751/ref=sr_1_1?ie=UTF8&qid=1354650342&sr=8-1&keywords=food+allergies+and+food+intolerance

I am fairly certain that chronic bacterial and viral pathogens have been part of my illness based on symptoms and lab tests.

I am now thinking that various food intolerance are also part of my illness. I did a rigorous elimination diet in early December and have been trying to now add foods back in. And foods other than gluten have given me significant issues!

I'm starting a cooking/nutrition blog which will have tips on healthy eating, "regular" food recipes and also allergen free food recipes. I recently posted a recipe for an egg free, dairy free, gluten free, sugar free carrot raisin muffin that is good! http://tinascocina.com/2013/03/12/gluten-free-carrot-raisin-muffins/

I'm currently working on a recipe for a no sugar, no oil, GF banana muffin. :-)

Food intolerance CAN cause people to feel poorly and it is worth exploring if you haven't already.

Those books I posted are a great place to get good info!

Best,
Timaca

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Catgirl
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Mother nature didn't make the wheat we have today. It's been altered by man. To me, hybridized is just semantics. The wheat is hybridized with non wheat plants to introduce different genes. It's also exposed to chemicals and radiation to produce different offspring. That sounds genetically modified to me.

The link below says it's worse for us than what is technically considered genetically modified. Again, semantics. Agribusiness is doing their best to confuse everyone.

GM corn and soy are everywhere in the food chain: animal feed, in your supermarket and restaurants. I wouldn't be surprised if the wheat is already in our food chain, not that it matters. What we have now is bad, if not worse because everyone's eating it.


http://www.wheatbellyblog.com/2012/02/wheat-is-not-genetically-modified/

http://www.naturalnews.com/037170_gm_wheat_liver_failure_gmo.html

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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girl
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Yes! I think hybridized is even worse than GMO, if you can imagine that.
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Lymetoo
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Whatever you call it .. they've ruined the wheat now being consumed in the US.

--------------------
--Lymetutu--
Opinions, not medical advice!

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