posted
I will ask my LLMD to test me for this on our next appointment. I am just wondering if anyone has done this before? Are tests for this as "accurate" as Lyme tests?
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
| IP: Logged |
posted
They're not very accurate. My LLMD did a saliva test for cortisol and something showed up that indicated gluten intolerance.
I didn't really get the concept. I didn't totally abstain from gluten.
Then last year everything hit the fan and I discovered through diet that gluten was indeed a problem for me!
Within one week of eliminating gluten, I felt tons better!
PS... I had also had the intestinal biopsy in 1980 and it came back negative. I think the dr MISSED! .. plus, I had not been instructed to eat plenty of gluten prior to the test.
At that time I had what I thought was a "wheat allergy" and had not eaten very much gluten at all for several years.
posted
I have been testing myself for the last week by *totally* abstaining myself from any gluten and it made a clear difference. I don't have bloated stomach and flatulence anymore and I've had these for years but never paid attention. I realize celiac can also cause a lot of the neuro stuff i have(tingling, burning etc.) so I am going to investigate.
It would be kind of hard to give up forever on bread, pasta, rice etc. without knowing for sure it's harming me...
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
| IP: Logged |
quote:Originally posted by chamade: I have been testing myself for the last week by *totally* abstaining myself from any gluten and it made a clear difference.
I would say you have your answer! Since I had stopped eating wheat for about 20+ yrs, the gluten-free thing was not so hard for me.
There is a lab in Dallas that does very good testing. I just can't afford it right now. I'd like to be tested for soy and eggs as well as the gluten.
The lab is called Enterolab.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
My LLMD routinely tests those he's diagnosing with Lyme for Celiac Disease.
Tinkyada is a good pasta. Rice is gluten-free. The ONLY thing that's not very good on the gluten-free diet is most bread. It helps to toast it. Kinnikinnick is the brand I like best.
I would ask for the blood test, the full celiac panel (not just IgA). The testing has improved significantly, but cannot pick up non-celiac gluten intolerance.
Enterolab tests for gluten intolerance, but cannot differentiate whether it's celiac or gluten intolerance.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
tailz
Unregistered
posted
I had two colonoscopies - 2 years apart - both were 'negative' for gluten problems, but by the second colonoscopy, I was looking like I'd walked out of a concentration camp - maybe worse at 88 skeletal pounds - and it was STILL negative.
I think these bugs compromise the enzymes produced by the pancreas. And if you don't have the enzymes to digest something that day - bingo - your body lets you know not to poison it.
You also may want to research electromagnetic fields - Dr. Becker, author of 'Cross Currents' says there are studies out there that confirm that these unhealthy signals compromise enzyme production, resulting in 'food' being viewed by the immune system as unhealthy.
I also think some of my food reactions are simply reactions to my feeding parasites. I've noticed that now that I've started minocycline, my appetite is way up like it was last summer - did killing off one bug leave my others hungry now with nothing to eat?
IP: Logged |
posted
We tried a really good gluten free bread that was recommended previously by another poster last year. Most gluten free breads are very "gummy" tasting and almost impossible to eat, but the Millet and Flax bread by Sami's Bakery in Tampa is wonderful. My daughter is the sensitive one, but I like it so much I eat it too.
We live in NJ and have it shipped here. It is $3.99 a loaf. They have many different products that are all good.
I have no affiliation with this company other than being a customer.
quote:Originally posted by tailz: I had two colonoscopies - 2 years apart - both were 'negative' for gluten problems, but by the second colonoscopy,
Don't you mean endoscopy?? A colonoscopy will not find celiac disease.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
tailz
Unregistered
posted
Oh yeahhh. He did an endoscopy at the same time as my second colonoscopy. I'm getting confused here - I actually had 2 of each though - I remember that! And a barium swallow, too!
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Tinkyada is a wonderful rice pasta. I am so thrilled with their choices.
One easy way is to scoop it out of the hot water when it's done. That way there's no lifting of a heavy, boiling pot. It can cool before lifting. There are pasta scoops or wire scooper things at cooking stores.
-------------- As for the TESTS. Years ago I had the stomach scope and it was negative, BUT I had not eaten any wheat for quite a while as I started to make the connection.
The doctor who did the scope was furious with me because I had sneaked in without my (the) PCP's referral. I was so sure I had celiac, but his test said no.
Then, years later, a new doc tested me for genetics and celiac. She was 99 percent certain due to the coding, as certain as the test can be.
But, my body tells me. And, yes, gluten can affect neuro stuff. There's a ton of research on that.
The new doc said a person must be exposed to gluten for the testing - whatever testing is done - to be able to be accurate. Makes sense, but the previous guy never asked if I was eating it at the time.
The new doc she said I would need to eat 2 pieces of bread a day for two weeks prior to tests. I knew could not even do it for a day. She understood and ordered genetic testing. Celiac organizations would have current details.
Genetic testing is far less invasive than a stomach scope and nipping a piece of the stomach out. And no knock-out drugs to process.
(I have a question, though, that one might have celiac aquired by infection (as is c. sprue) and not by genetics. So that might be considered if genetic tests are negative.)
Going gluten-free is a big help not just with stomach pain that had sent me to hospital a few times, but depression lifted some and brain fog a bit less. And the overall fibro pain is a bit less, too. OR, I should say it's far worse if I eat gluten.
With lyme in the picture, going gluten-free may not be the first-class ticket to health, but it may get us in line to get the ticket.
[ 07. August 2007, 01:22 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
bettyg
Unregistered
posted
my 2nd llmd in minn. had complete body lab testings done; that's how i learned i had food allergies:
gluten ... wheat and rye only
casein ... cow's dairy milk, cheeses, egg whites, and garlic!
being a diabetic 6 mo. prior to my correct lyme dx doesn't help either!
i think it was enterolab who did mine; my minn. llmd appt. and all tests done/outcome is in my newbie's links i sent you.
there is also something new out your hospital can check this at least in iowa! i'll have to post later today about it; can't remember the name! uffda. cost $20!!! *********************
it's also been shown in celiac newsletter by scott!; check that site; you might fight it there!
my gut had been sick 30-35 yrs; never knew why; now i know and my late dad never knew he was the carrier!
IP: Logged |
Vanilla
Unregistered
posted
I too love the Tinkyada brown rice pasta especially the cork screw shaped ones.
I have been tested twice. So far no test was positive for gluten intolerance yet I know I have it and others on my mom's side of the family have it too. I eat totally gluten free. It sure beats bloody colitis and being in the hospital hooked up to an IV for nutrition while being put on a liquid diet due to being so ill. I never want to repeat that nightmare again. I was skin and bones and starving to death.
IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I've had them tested through a colonscopy, saliva, blood by quest, blood by a lab specializing in food sensitivities.
I've got some odd food sensitivities, including lemon and red leaf lettuce, but gluten is fine. Luckily, since it's the one thing I can count on not to make me nauseous.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
I stumbled upon info on the paleo diet. It looks very interesting, claiming that humans are genetically adapted to eating meat, fruit, veggies and nuts since this what hunters and gatherers are for millions of years. Wheat, flour, corn, processed foods, rice etc. are considered bad foods because they came to exist only 10,000 years ago and hence our genes did not have enough time to adapt. This diet is automatically gluten free so I am giving it a try.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
Printer-friendly view of this topic