posted
Are there better ways to screen for this disease that may be more accurate?
Your opinion and experience are greatly appreciated!
Posts: 574 | From New Jersey | Registered: Feb 2004
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James1979
Unregistered
posted
I recently finished reading a book about gluten sensitivities, and the author suggested that enterolab.com is the best place to check for gluten intolerance.
Remember, you don't want to check for celiac's, you want to check for gluten intolerance.
I've studied this a lot, and it seems like all the "pros" suggest using enterolab. Actually, I just did this test, and I'm expecting to get the results back soon.
Here's is the excellent advice that sk8ter gave me: "This test IS the most accurate. I was tested by others and nothing...this test gave me the geneotype and the specific genes I had for gluten issues along with sensitivity to egg/casein/soy. This is the test that all on the celiac groups who have negative tests end up going to and voila they are positive by DNA....get the comprehensive one..it is well worth the money !!!!"
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posted
Not really. They missed mine 30 yrs ago. You have to have been eating the equivalent of 5 slices of bread per day for 90 days for it to really be valid. Otherwise, it will be missed.
Enterolab is probably the best way. I just went by elimination to know for sure. I wasn't about to eat that much gluten and be miserable for 90 days!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Endoscopy accurate? Nope. Missed mine. But they didn't tell me that I had to eat a couple pieces of bread a day for weeks prior for the test to show anything.
Endoscopy also requires strong drugs to knock you out. This is very hard on the liver & kidneys and just puts your body under more stress.
Now, those without many health concerns may find such a procedure to be a "piece of cake" (so to speak). But, lyme patients are much more affected by drugs and stress. And not just for a day. It can take a month (or more) to just get over a normal dental cleaning. It's best to avoid chemical and physical /endocrine stress as much as possible.
Even salivia tests are not all that accurate if one does not eat substantial gluten for some time prior, I don't care what the companies say, both salivia and endoscopy missed but the genetic blood work glowed like a Christmas Tree, so to speak.
So, I would go with a genetic (DNA) test.
But, even if you don't have celiac, a gluten-free diet may be very important as infections (and antibiotics) can really mess up the lining of the stomach and, in such weakened states, gluten then further messes that up. I think there can be a sort of temporary or secondary celiac.
Many LLMDs strongly encourage patients to be gluten-free. But, for those who might have celiac, I think it's a good idea to rule that out or confirm first.
A genetic blood test is the best way to go, in my experience. It also helped me to stay totally on the path and not say "well, maybe a little won't hurt" - as I found out, even a trace could cause lots of neurological problems for me every time (seizures).
The genetic test was helpful in so many ways and also gives me more credibility with doctors or if in an emergency setting so I can insist on gluten free Rx, etc.
Also, because I tested positive for celiac, my sister also has explored this and it seems she may be too, although she's only done elimination to this point. So the genetic (DNA) testing can be important for whole families.
Celiac can cause so many problems, not just stomach woes.
==========================
As James points out, in a category separate from celiac itself, there can be ranges of gluten problems.
Even if not celiac, my opinion is to go gluten free until the lyme is treated, this therapy has been helpful for many with gluten sensitivity:
Also search the archives here at LymeNet for a very popular thread about this program. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Just had an endoscopy a year ago and it made me so sick. It's a very invasive procedure and the results were worthless including the fact that it cost a lot.
Just being under for the test was really horrible for me. I don't do well with anesthesia, even the small dose for this test. Just my opinion.
Posts: 43 | From Upstate NY | Registered: Jul 2009
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posted
Thank you James, Lymetoo, and Keebler .......I just looked at the Enterolab website and spoke to a customer service rep who was very helpful......I'm definitely going to do this.
I know that this is a long shot but I'm going to see if my conventional gastro will give me a script for a couple of the Enterolab tests so that maybe my insurance will cover some of the cost.
Eliz428 .....I can relate with what your saying.....other than screening for cancer, the endoscopy is a pretty useless test....sorry to hear that you had a problem with the anesthesia.
Posts: 574 | From New Jersey | Registered: Feb 2004
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posted
i agree that endoscopies are incredibly difficult for people with lyme. even though i am still so sick with gastro stuff, i simply can not go through one again. the anesthesia gave me seizures and vertigo. it was awful! just my experience. love, jess
Posts: 651 | From ct | Registered: Sep 2011
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posted
Thank you James, Lymetoo, and Keebler .......I just looked at the Enterolab website and spoke to a customer service rep who was very helpful......I'm definitely going to do this.
I know that this is a long shot but I'm going to see if my conventional gastro will give me a script for a couple of the Enterolab tests so that maybe my insurance will cover some of the cost.
Eliz428 .....I can relate with what your saying.....other than screening for cancer, the endoscopy is a pretty useless test....sorry to hear that you had a problem with the anesthesia.
Posts: 574 | From New Jersey | Registered: Feb 2004
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posted
imagine2, antigliadin antibodies in the blood is helpful for screening, but it is not diagnostic. The IGA TTA is predictive of celiac.
High IGA AGA (anti-gliadin antibodies) can also suggest a wheat allergy.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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