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» LymeNet Flash » Questions and Discussion » Medical Questions » Newly discovered tie between gluten and Lyme

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Author Topic: Newly discovered tie between gluten and Lyme
w0tm
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My LL doctor has been doing research along with other respected Lyme doctors and they have discovered a much higher percentage of people than the norm who have Lyme have developed an intolerance to gluten. They also see non-Lyme infected patients.

After a year of testing patients she and the other (about a dozen) doctors have compiled results of over 4,000 patients. Of people not Lyme infected (total of about 500) about 50 are gluten intolerant and most at such a low level it is not noticed.

Of those who have had Lyme for more than five years (like me) and Lyme has been severe (like me) gluten intolerance is OVER 50%(!!) and most are so severe that removal of gluten from diet shows marked improvement in health within days. I tested @ 850% over the norm (gluten intolerance). I have been legally disabled for the last 15 years due to Lyme.

Within a week of ZERO gluten I have not felt this well since before contracting Lyme! I have days where I feel 100% healthy! She said her other Lyme patients are ALL reporting moderate to major improvements with amount of improvement equal to level of intolerance. ALL have reported a noticeable improvement in health.

Amazing! One patient tested 4,000% over norm gluten intolerant. Removal of ALL gluten and within ten days (she said) he went from unable to care for himself to out shopping! She and other doctors are writing joint paper for national medical journal. Her entire hospital all doctors are now testing their patients for gluten intolerance irregardless of their specialty. I CONSIDER THIS MAJOR NEWS.

Gluten free foods are labeled GLUTEN FREE. Refer to Web sites for gluten free foods. Plenty to choose from. She stopped my Lyme antibiotics and I still feel fine.

I RARELY POST AS I ONLY POST LIFE CHANGING NEWS. THIS HAS CHANGED MY LIFE. Gluten test is simple blood test. Also test for lactose and shell fish as the group of doctors found about 5% of Lyme patients intolerant to one or both. Zero for their non-Lyme patients.

This is NOT a cure for Lyme BUT lowering my Lyme symptoms this much is a MIRACLE FOR ME! NO MORE PAIN! HOPE THIS HELPS MANY OF YOU! GOOD LUCK! Tell your LLMD!

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Catgirl
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Good to know! Thanks for posting this. Glad you are feeling better. :)

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

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Ellen101
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Thanks for posting this! I just started going gluten free at the suggestion of my LLNP and after a few days I was amazed at how much better I felt. Practically no pain! I am also trying to avoid sugar and follow the cadida diet so that could be helping as'well. Unfortunately today I developed some'of'my old pain back again, not sure why..
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Catgirl
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Ellen, did you have more fat or oils today? They give me pain. When I cut back on them (balance), the pain subsides.

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

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Ellen101
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No, the strange thing was I had to go for fasting bloodwork so I could not eat or drink in the morning. I was there quite wile, then did a few errands on the way home. So, it was several hers before I had anything at all. Not sure if that contributed to it or not.
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Lymetoo
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So glad you have found out and that you took action!!

I've been gluten free for about 6 yrs. It has really helped me! They missed my gluten intolerance 30 yrs ago due to improper/inadequate celiac testing.

I didn't think there was a test for gluten intolerance? Which test are you referring to??

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--Lymetutu--
Opinions, not medical advice!

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Catgirl
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Ellen, I never feel good on a fasting day (not because I'm hungry).

--------------------
--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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Me either.. I had to fast for bloodwork yesterday and I'm still trying to catch up.

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

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w0tm
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quote:
Originally posted by Lymetoo:
So glad you have found out and that you took action!!

I've been gluten free for about 6 yrs. It has really helped me! They missed my gluten intolerance 30 yrs ago due to improper/inadequate celiac testing.

I didn't think there was a test for gluten intolerance? Which test are you referring to??


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w0tm
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I just know it is a blood test. Also blood tested for lactose and shell fish. I was negative on both. If your doctor and local labs do not have gluten blood test e-mail me (I am rarely on this site) and I will ask my doctor. No fasting required. gyantis at gmail dot com May be something new? All 12 doctors did this blood test on thousands of patients. I am in Midwest. Celiac is a different test. If you have celiac disease that can be life threatening. People with severe celiac have died just smelling baking bread. Fortunately celiac disease is rare. Apparently gluten intolerance is not rare.
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w0tm
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quote:
Originally posted by Ellen101:
Thanks for posting this! I just started going gluten free at the suggestion of my LLNP and after a few days I was amazed at how much better I felt. Practically no pain! I am also trying to avoid sugar and follow the cadida diet so that could be helping as'well. Unfortunately today I developed some'of'my old pain back again, not sure why..

I've heard sugar can bunch up in joints causing pain. I try to keep sugar to a minimum. I am very mildly hypoglycemic so keep candy bar handy in case an attack occurs. About once ever two years. My brother has HG attacks weekly! You suddenly are so weak, sweating, dizzy you think it is a heart attack. A smal amount of sugar fixes HG. But an attack is scary first time it happens. Otherwise I avoid sugar as much as possible but sugar in so many foods!
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Keebler
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Those with porphyria should not fast. Secondary porphyria often goes along with lyme. More about that here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?#000000

Topic: what type of M.D. tests for PORPHYRIA
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Keebler
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-
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/122554

Gluten Intolerance - LymeToo posted


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/122363

Gluten Thread - (started by kimmie)
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Keebler
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Last week, I just found out that at least once I month, my food has been contaminated with gluten from "flour flying all around the kitchen" of a natural foods store where I get a couple things from their deli kitchen.

Today, in a follow up call, I found out that even their advertised Gluten Free holiday dinners are not prepared in a "certified GF" room, but right alongside all other holiday foods.

Seems false advertising to sell the whole turkey with all the works, distinguishing it to be GF, when not prepared properly.

It's more than just about the ingredients.

This can be very serious for someone with celiac as gluten can create damage for up to six months after ingestion of even a trace.

I had not been aware they had no dedicated "clean" zone and was never told this when I'd call and ask if this dish or that item was gluten free -- until last week when I called about TEFF sandwhich wrap they featured in their deli. Teff is GF, but not unless it avoids all contact with wheat, etc.

These Teff Wraps were prepared on cutting boards that also cut wheat bread just a minute prior. It's a good thing that a staff person finally got around to mentioning that.

This is very important. As it's a major organic food store and they often feature gluten-free items, I assumed. I was wrong to make such an assumption.

Gluten (in wheat, rye, barley, spelt, kamut and added to "Mexican" or "Spanish" rice and other flavor packets - and in many processed foods even broths in the form or barley malt);

HIDDEN SOURCES OF GLUTEN (each link has detail the others may not):

http://www.glutenfreehelp.info/wp-content/uploads/2011/03/TS-Hidden-Sources-of-Gluten1.pdf

http://www.celiacsolution.com/hidden-gluten.html

http://www.tacanow.org/family-resources/hidden-sources-of-gluten/

http://blog.primohealthcoach.com/blog/bid/74158/Hidden-Sources-Of-Gluten

http://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf

7-page pdf

http://thechart.blogs.cnn.com/2011/10/31/gluten-in-cosmetics-may-pose-hidden-threat-to-celiac-patients/

Gluten in cosmetics may pose hidden threat to celiac patients

. . . The vitamin E found in beauty products may be derived from wheat and contain gluten, even though the label just lists "vitamin E," . . . .

---------------------

Basically, you can't go wrong with food from the earth. There are many certified GF packaged foods but, really, so many are too refined, anyway or contain certain additives that may not be good for us, anyway.

For meats and fish, though, even with humanely and organically raised meats and wild caught fish ---

you'd still need to talk to the department manager about how items are prepared for the case. If they offer any items with breading - and those are prepared in the back room - that must be discussed.

If the air vent circulates with that of an in-store bakery, that's a special concern.
-

[ 02-14-2013, 04:16 PM: Message edited by: Keebler ]

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Keebler
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Please, I hope no one will be discouraged by this. Well, okay, I'm really miffed myself at how much work it can take to get organized around all this - and then to find that I made an error in some assumptions.

Still, it's worth it. It is REALLY worth it. After doing all the homework it does get easier.

The few (okay, even many) glitches that come around as "teaching moments" may feel like roadblocks but it's good to know how to avoid those. It gets easier.
-

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CD57
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WOtn do you have celiac or are you on the "gluten sensitivity" spectrum? Big difference. I also know folks whose severe neuro symptoms went away after going gluten free.

I really would like to know which blood test you had, can you find out? There are cheek swab tests to see if you have the gluten gene, and there are blood and colonoscopy tests for celiac, but I'm not aware of gluten sensitivity blood tests.

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MichaelTampa
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Hopefully they will publish the actual test they were using. There are multiple tests available for gluten intolerance, some of which do not give a Yes/No answer, but rather a probability of it being an issue type answer.

While notable, hopefully they'll continue their work to reflect the impact (if any) on those who have had significant treatments to alleviate the intolerance. For example, I have gone through Allergie-Immun ("AI") treatments, and also NAET.

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Lymetoo
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You are right, Wotm.. gluten intolerance is NOT RARE at all!

Find out about the test, please. Usually it is trial and error.. you go on the diet (completely) and see how you feel.

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

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timaca
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May I also mention that if you are intolerant to gluten you may be intolerant to other foods too. Two good book on the subject are:

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

Best, Timaca

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timaca
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Also here are two GF recipes that I recently put up on my blog if you are interested:

http://tinascocina.com/2013/02/06/granola-bars/

http://tinascocina.com/2013/02/15/maple-sweetened-granola/

Best, Timaca

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nefferdun
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I am curious, how do we get tested? Wouldn't that be the most logical thing to do? I don't have obvious symptoms so I never gave it up. I feel pretty well but if I tested positive i would give it up to see if I felt even better.

I just tested for blood type and I am A negative. Supposedly type A people do not have a problem with gluten. They should also be vegetarians (which I now am).

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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timaca
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Nefferedun~
There is a test for celiac disease (blood test for antibodies) and then one can do an endoscopy to look for villa damage in the small intestine.

There is no good test for gluten intolerance. The best way to test for it (and any food intolerance for that matter) is to give up the food for several weeks and see if you feel better.

I started with giving up gluten, then I decided to give up all the top food allergens (gluten, dairy, soy, peanuts, tree nuts, fish, shellfish, citrus, corn, eggs, tomatoes, plus a few more). THEN I decided to really try to figure it out and I went on a few foods elimination diet. Basically eating only turkey, yams, sweet potatoes, pears, some rice, lettuce, avocados. Now I've added in a few foods (broccoli, carrots, beets). When I've tried to add in some of the more allergenic foods: yogurt, pecans, salmon (and when I just inhaled peanut dust--but didn't eat any) I had major issues! I was shocked. So, we'll see. I need to retest those foods to make sure they are problematic, but right now I'm just trying to add foods back in that I can eat without problems.

I am A-. I was vegetarian (even mostly vegan) for awhile and I felt much worse than I do now. I think it was because I was eating foods I was intolerant too.... Overall, I do think that vegetarian is a healthier way to live.

Best, Timaca

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Catgirl
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Timaca, peanuts are often loaded with afflotoxins, hence peanut allergies.

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

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Razzle
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There IS a test for gluten sensitivity: The blood gliadin IgG test (and can also get gluten IgA and IgM tests - Alletess labs does these).

Also there is a stool test that can be done through Enterolab.com that looks for gluten antibodies.

But even those who have trouble with gluten don't always test positive on any test.

So the elimination diet - minimum of 3 months, best is 6 months - is really the best test.

Observe what disappears on the gluten-free diet, then observe what returns when you start eating gluten again.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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surprise
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Also, the metamatrix stool test checks for elevated
anti-gliadin antibody.

If high, you've got a problem with gluten- recommend to go off 100% to heal, and check for celiac disease.

But even if celiac DNA comes back negative, this is indicating gluten is still causing inflammation and havoc.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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timaca
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Catgirl~ Yes, I know that peanuts are a top food allergen. That is why I was nervous about being in that restaurant where there was peanut dust all around. I was just shocked at how bad my response was!

And how bad my response was when I tried to add pecans back in last week.

I used to eat these foods all the time!

So, this is quite the experiment for me!

Best, Timaca

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nefferdun
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I have given up so much, it would be a nightmare to not have wheat. I just can't bring myself to it. I have a CBS mutation so I shouldn't have foods with sulfur, including animal products and a vegetables in the cabbage family and soy. I eat some of it anyway.

The low fat diet is extremely hard to follow faithfully and when I don't I relapse. That means I can't even have an avocado or nuts or seeds.

If I had to give up gluten, why bother to eat? Home made whole wheat spelt bread is my food joy in life. Maybe I will be tested though, just to find out.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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timaca
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nefferdun~ I love wheat too. I grind my own wheat and make homemade whole wheat bread. It is delicious! Here's my recipe: http://tinascocina.com/2013/01/28/honey-whole-wheat-bread/

When I went GF, my ferritin level skyrocketed. Whether or not that was lab error or not, we will know when I retest. But that is a good indication that gluten was affecting my GI tract in a negative way. (By the way I was negative for antibodies to gliadin). Testing doesn't catch intolerances...which is what I may have.

For me, I am going to stay GF until my next lab draw in May and see what happens to my immune function (long story) and ferritin level.

I totally understand where you are coming from. Right now I'm eating about 10 foods and that is it. But, that will get better and if it means I will be healthier, I will do it.

Good luck to you and lots of hugs....I know what a nightmare it is to be sick and how hard it is to figure out the right path to get well.

Best, Timaca

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Lymetoo
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quote:
Originally posted by Razzle:

But even those who have trouble with gluten don't always test positive on any test.

So the elimination diet - minimum of 3 months, best is 6 months - is really the best test.

-
that has been true for me

I never was interested in paying Enterolab $500 to find out for SURE.

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

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timaca
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Also, please know that I am not suggesting that people do an elimination diet of any kind (including eliminating gluten) without first talking it over with their doctor. None of it is fun as Nefferdun has pointed out.

This was something that I got into for various reasons. How it will all turn out is still up in the air.

Best, Timaca

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Razzle
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I just looked and EnteroLab's Gluten Sensitivity stool test is $99.

The genetic test (cheek swab) is $149. If I had to do it over again, rather than bothering with the gluten sensitivity stool test, I'd stick with the gene test and the elimination diet.

And no, I am not affiliated in any way with EnteroLab.com, the doctor or the lab. Just a satisfied customer.

But I do miss my homemade wheat bread...sigh. Can't ever have it again, I have a Celiac and a Gluten Sensitivity gene, and when I do eat gluten now, or even breathe it in a store/bakery, I am sick for months after.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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jjourneys
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I have suffered with IBS and Celiac's for 40 years - so we thought. I have been to gastrologists all my life it seems. I have been on a strick and careful gluten free diet for 3 yrs since an endoscopy found villa damage in the small intestine. Felt better on the glutenfree diet but not completely well. Also cut out lactose, which helped but did not cure.

I was diagnosed and am in 5th wk of heavy antibiotic treatment for lyme. It's been tough, herxing, but I made an amazing discovery!!! No more gut issues!!! LLMD thinks maybe I had some co-infection that has gone away or is in hiding with the heavy antibiotics. I'm not willing to try wheat again so soon, but this is the first time in my life I have not suffered with the IBS/Celiacs. The LLMD is surprised and we're going to do some investigation now.

Other small issues are starting to clear up, things I never found to be a problem, just slightly troublesome - weird spots on my body are disappearing after having been there for years.

The diagnosis of Lyme is new to me, the symptoms and misdiagnosis of IBS and FMS for years - I'm constantly researching and making strange discoveries in my own body.

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randibear
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i've been tested so many times i can't count for celiac, chron's, lactose tolerance, you name it.

always negative. colonscopies show no intestional damage, no stomach damage, nothing.

i've had so many tests, blood work, thousands of dollars. all negative.

--------------------
do not look back when the only course is forward

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Lymetoo
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quote:
Originally posted by Razzle:
I just looked and EnteroLab's Gluten Sensitivity stool test is $99.

The genetic test (cheek swab) is $149.


-
Wow... I checked about 6 yrs ago and it was around $500. Maybe they found a way to streamline the test.

Still waiting to hear which test Wotm used.

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

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w0tm
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I will see my doctor on Feb 21 and will ask name of test then post it here
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TX Lyme Mom
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According to well-known celiac expert Dr. Alessio Fasano, there are blood tests for celiac and blood tests for gluten ALLERGY, but there are no blood tests for gluten INTOLERANCE. That doesn't mean that gluten intolerance doesn't exist but only that it's not possible to do a blood test for it.

Most of the celiac forums recommend Enterolab for celiac testing. Their genetic cheek swab test was well worth the $149 cost for us because the blood tests for celiac can miss up to 4% of true celiac patients since the blood tests are based on IgA antibodies and 4% of celiacs have "selective IgA deficiency". So this 4% of the celiac population will get a "false negative" result from their blood tests.

That's what happened in our daughter's case, and she suffered unnecessarily for over two decades as a result of her IgA deficiency. She was screened for celiac in her early 20s. Even after a positive biopsy for celiac some 20 years later, her blood test for celiac was still negative, thanks to her IgA deficiency.

If it weren't for the genetic test at Enterolab, she would still be suffering. It's the best $149 we've ever spent!

The reason I say that is because true celiacs can be so exquisitely sensitive to gluten that a trial gluten free diet for them will not reveal the problem since it can be so extremely difficult to eliminate ALL traces of "hidden gluten" and all traces of "cross contamination" with gluten.

As others here have reported, even a minor exposure to a trace of gluten can make them very, very ill for days and weeks and even longer! That's why a trial GF (gluten free) diet won't work in such cases of true celiac -- ie, those very patients who most need to be diagnosed accurately.

The symptoms of what I like to call "neuro-celiac" are so similar to the symptoms of "neuro-Lyme" that is can be impossible to tell the difference. Believe me. Voice of experience is speaking here! Besides, it's documented in the medical literature.

Both Lyme patients and celiac patients can suffer from cerebral hypoperfusion, according to medical journal articles.

http://www.ncbi.nlm.nih.gov/pubmed/?term=cerebral+hypoperfusion+AND+celiac

http://www.ncbi.nlm.nih.gov/pubmed/9409364

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TX Lyme Mom
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Here's a link to my favorite article on celiac by celiac expert Alessio Fasano, MD.

http://www.feingold.org/Research/PDFstudies/CeliacArticleAug2009.pdf

(Be sure to bookmark this link because it's impossible to find a FREE copy of this article otherwise, and you will have to pay a hefty fee for this article at the Sci. Amer. website. Non-profit educational organizations like this one are permitted under our copyright laws to publish such articles without charging the usual publisher's fee. However, you won't be able to find this article again via a Google search since it's hidden in the Feingold archives. That's why it's important to bookmark it.)

What I like about this article are the beautiful color illustrations which show how toxins can interrupt the "tight junctions" which causes "leaky gut", thereby allowing incompletely digested food molecules to gain access to the blood stream where they trigger food "allergies" (or other kinds of immunological food "intolerance" reactions) including even auto-immune celiac disease in persons who are genetically predisposed to it.

Well, guess what. Borrelia produces a low molecular weight, fat-soluble neurotoxin which is very similar to Clostridia toxin, according to Lyme expert Dr. Sam T. Donta and colleagues. (Donta's research was presented as a poster at an LDF Lyme Conference in 1998, but he never published very much about it in the medical literature. He patented it though, but I'm not very good at patent searches so I don't have a link to Donta's patent about the neurotoxin produced by Borrelia.)

Guess what else. Clostridia toxin is known to be capable of disrupting tight junctions in the GI tract, and Clostridia is also a suspected "trigger" for activating celiac in someone who is genetically predisposed to it. Well, are you thinking what I'm thinking?

If Clostridia toxin can trigger (ie, activate) latent celiac in a genetically predisposed person, then why couldn't Bb's neurotoxin do the same thing? Could this be the explanation for WHY so many Lyme patients develop celiac?...

...Or in patients who do not carry the celiac gene, then could Bb's Clostridia-like toxin trigger "gluten intolerance" reactions by allowing incompleted digested molecules of gluten to enter the bloodstream through the leaky gut mucosa?

Let me try explaining it like this. Think of "tight junctions" (see illustrations in the celiac article, link above) as being the "mortar between the bricks" with the "bricks" being the cells (enterocytes) which line the gut mocosa. When toxins such as Clostridia toxin (or perhaps Bb's Clostridia-like neurotoxin) "dissolve the mortar" (ie, the tight junctions), then that's what causes leaky gut.

Leaky gut is what sets one up for food allergies or food intolerances or even true auto-immune celiac, depending upon what kind of immunological response the person is genetically prone to developing.

Some unlucky persons have a gene for celiac "intolerances" in addition to the gene for celiac. That's a double whammy. But it would help explain why some persons are so exquisitely sensitive to gluten whereas other persons can "get by" with tiny amounts of gluten occasionally without having to pay such a high price for their indiscretions.

Persons who are "homozygous" for celiac are the unluckiest of all. That means having two genes for celiac -- one from each parent.

I hope this isn't too confusing. I'm trying to simplify it so that it's understandable, but I don't know if I'm doing a very good job or not.

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Keebler
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-
TX Lyme Mom,

You say it in a way I've not been able to, exactly as I think it can happen:

TX Lyme Mom poses:

"If Clostridia toxin can trigger (ie, activate) latent celiac in a genetically predisposed person, then why couldn't Bb's neurotoxin do the same thing? Could this be the explanation for WHY so many Lyme patients develop celiac?...

... Or in patients who do not carry the celiac gene, then could Bb's Clostridia-like toxin trigger "gluten intolerance" reactions by allowing incompleted digested molecules of gluten to enter the bloodstream through the leaky gut mucosa? (end quote)


I'm adding that, IMO, while there may be some tests to help shine a light on if someone has genetic celiac, there is no test that will necessarily to show ACQUIRED celiac from infection and leaky gut.

A stomach biopsy might help show some damage but it may not be what the typical doctors are looking for and they might miss other things.

--------------------------------------

Also to consider, that GMO Foods can cause "leaky gut" the film, GMO Roulette is a starling education and they so well illustrate how that happens. Link here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors;

GMO foods that destroy the GI Tract; Gluten; Dairy.
-

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=forum;f=1;hardset=0;start_point=0;DaysPrune=1000

LymeToo posted -

Topic: Another facet of celiac disease....
-

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tickled1
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Wotm,

Did you find out the name of the test?

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TX Lyme Mom
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quote:
Originally posted by Keebler:
-
I'm adding that, IMO, while there may be some tests to help shine a light on if someone has genetic celiac, there is no test that will necessarily to show ACQUIRED celiac from infection and leaky gut.

A stomach biopsy might help show some damage but it may not be what the typical doctors are looking for and they might miss other things.

Keebler,
You're quite obviously one of the best informed people in this forum, but I suspect that you are probably mistaken about the idea that "acquired" celiac is different from "genetic" celiac -- with the exception being, of course, that celiac experts will admit that so far only two celiac genes have been identified and that there could perhaps be other unknown celiac genes.

As for your other ideas about the failure of endoscopic biopsies to catch all cases of celiac, take a look at this article:

https://enterolab.com/StaticPages/Resources.aspx -- Click on the first item about "before the villi are gone"

As an example of the truth of this article, our daughter had become so ill that she ended up in the ER with severe dehydration from vomitting and diarrhea which required TWO bags of saline! In spite of this dramatic presentation, her intestinal biopsy revealed only "patchy villous atrophy" which is only stage one of four stages in the progression of celiac!

Nevertheless, she is so exquisitely sensitive to gluten that just breating the dust from some pet food that had gluten in it caused a bad reaction for her which lasted a couple of days.

On another occasion, she reacted to the dust from dry wall when their house was being remodelled, and she had to seal herself off in a separate room with an air filter going during the renovation. When she looked it up on a celiac website, she discovered that dry wall contains glue made from wheat which holds the compressed gypsum together. Celiac patients are advised to move into a hotel when they are having any repairs done which involved cutting into drywall. Can you imagine that!

Likewise, she couldn't figure out why she wasn't feeling well recently until she realized that one of her hairsprays contained wheat proteins in it. She had failed to read the label carefully enough -- although she had already thrown out any cosmetics that contain vit E since it is derived from wheat germ oil.

In retrospect, we have no doubt whatsoever that her grandmother had undiagnosed celiac. I consider myself to be "intolerant" of gluten and it's obvious that I'm the guilty parent with the bad gene, but mine has not (yet) progressed to full-blown (ie, "activated" -- ie, the autoimmune form) celiac. It's what I refer to as "latent" celiac although I don't know if that's the accurate terminology for it or not.

I can "get by" easily enough with minor infractions in my diet, such as when eating out, although I'm 100% GF when eating at home which is most of the time for me. My health has improved tremendously, and all of my supposedly "age-related" complaints went away after I began a GF diet at the same time that my daughter did.

I started the diet just so I could learn about GF food preparation because I didn't want her to get sick when she comes back home to visit. It didn't take me very long to realize that gluten is indeed a problem for me, too -- only just not nearly as severe as it is for her, of course. In other words, she has developed the autoimmune form of celiac, but mine hasn't (yet) progressed to the auto-immune stage.

Most persons who are genetically predisposed to celiac never develop true celiac -- ie, the autoimmune reaction to gluten.

All of my headaches and morning hip stiffness went away after going gluten free a few years ago. Whoopee! -- no more Excedrin and no more Aleve just to start my day. I feel like a spring chicken -- 10-15 years younger than I felt before with tons more energy now than I had several years ago. Folks who meet me think I'm at least a decade (or more) younger than my real age.

Anyone who is genetically predisposed to celiac would be wise to avoid gluten in order to prevent the progression to active celiac -- ie, to the autoimmune reaction to gluten -- because that's irreversible once it does occur! These folks can "get by" with a somewhat less restrictive GF diet and lifestyle -- what I call 99% gluten free. That's a huge advantage because my lifestyle is infinitely easier to follow than hers is.

"An ounce of prevention is worth a pound of cure."

This is why I'm such a firm believer in the value of the genetic cheek swab test from Enterolab. It's the best $149 we've ever spent! (I didn't bother with being tested though because I don't need the data. I just assume that I'm the carrier of the celiac gene in our family, and I've adjusted my dietary lifestyle accordingly.)

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Pinelady
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Segmented Filamentous Bacteria in human ileostomy samples after high fiber intake.
http://www.ncbi.nlm.nih.gov/pubmed/23406300
FEMS Microbiol Lett. 2013 Feb 14. doi: 10.1111/1574-6968.12103. [Epub ahead of print]

Jonsson H.
Source
Department of Microbiology, Uppsala BioCenter, Swedish University of Agricultural Sciences, Uppsala, Sweden.
Abstract
Segmented Filamentous Bacteria, SFB, are inhabitants of the small intestine of various animals, where they can be detected microscopically due to their specific morphology and intimate association with the intestinal epithelium.

SFB colonize the distal part of the small intestine in a host-specific manner

and affects important functions of the immune system, such as the induction of secretory IgA production and regulation of T cell maturation.

Considering the influences SFB have on immune functions,

they could be considered a key species in host-microbial interactions of the gastrointestinal tract.

Although these influences might be executed by other microbes,

a human adapted variant of SFB is not unlikely.

In this study, ileostomy samples from 10 human subjects were screened with PCR,

using primers derived from sequences of SFB from rat and mouse.

PCR products were obtained from samples taken from one individual at two time points.

Sequencing revealed the presence of a 16S rRNA gene

with high similarity (98%) to the corresponding genes from SFB of mouse and rat origin,

thus indicating the presence of a human variant of SFB.

The findings presented in this study will hopefully encourage research

to elucidate whether this intriguing organism

is a persistent member of the normal human microbiota.
----------------
Organization and segregation of bacterial chromosomes.
http://www.ncbi.nlm.nih.gov/pubmed/23400100
Nat Rev Genet. 2013 Feb 12;14(3):191-203. doi: 10.1038/nrg3375. Epub 2013 Feb 12.

Wang X, Llopis PM, Rudner DZ.
Source

1] Harvard Medical School, Department of Microbiology and Immunobiology, HIM 1025, 77 Avenue Louis Pasteur, Boston, Massachusetts 02115, USA. [2].
Abstract

The bacterial chromosome must be compacted more than 1,000-fold to fit into the compartment in which it resides.

How it is condensed, organized and ultimately segregated has been a puzzle for over half a century.

Recent advances in live-cell imaging and genome-scale analyses have led to new insights into these problems.

We argue that the key feature of compaction is the orderly folding of DNA

along adjacent segments

and that this organization provides easy and efficient access for protein-DNA transactions

and has a central role in driving segregation.

Similar principles and common proteins

are used in eukaryotes to condense

and to resolve sister chromatids at metaphase.
==========
IMO Kaiser lied.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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poppy
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At NIH, the institute that handles infectious diseases also has allergies in their scope of work. This is because both are involved with the immune system.

So, chronic infection is going to cause immune mediated problems. I think gluten sensitivity is just one of them. As we have all heard, people with lyme do develop a number of allergies they never had before.

There are also other ways to get gluten sensitivity.

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Lymetoo
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Here it is, w0tm....

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

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Lymetoo
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Posting this from Gary (w0tm):

"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!"

( http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123131;p=0 )

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

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Bitten in Bergen
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Our LLMD also has us on gluten-free while treating lyme & co.

I've also heard that for people with lyme associated joint pain that avoiding foods in the nightshade family (potatoes, eggplant, tomatoes, etc.) can make a huge difference.

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Lymetoo
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quote:
Originally posted by Bitten in Bergen:

I've also heard that for people with lyme associated joint pain that avoiding foods in the nightshade family (potatoes, eggplant, tomatoes, etc.) can make a huge difference.

-
It helps ME, for sure!

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

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