posted
It's sort of a mysterious phenomenon, but yes, it is very common for people with Lyme to be sensitive to gluten.
Going gluten-free, sugar-free, alcohol-free and dairy-free (not essy as a vegetarian) last year was the only thing that brought me out of near disability, but in retrospect, I wonder if I had some sort of systemic yeast problem from the antibiotics I had taken. Since my carb intake was nearly zero, I wonder if I killed the yeast, and felt better as a result.
Being careful with your diet is really important, so it's good you're doing that. I often think that if I had been on this diet when I was on my initial course of antibiotics, I might have gotten better instead of having to enter the chronic phase, when it's much harder to get rid of.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- IMO, it's absolutely essential to go gluten-free to give lyme treatment the very best chance possible.
I also think it's very important to be tested - not stomach biopsy as that often misses it, is invasive and expensive and requires a drug that can stress the liver.
A DNA (genetic) test is best so you know if you may have celiac.
Still, even if not celiac, there is substantial reason to still be gluten-free until into a solid remission from lyme (and if not celiac, then you may be able to eat gluten in moderation. (I think it's far to common in a modern diet.)
Web Search: Hidden Sources of Gluten
Also go to PubMed and search: gluten, neurological -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by slowli: in retrospect, I wonder if I had some sort of systemic yeast problem from the antibiotics I had taken. Since my carb intake was nearly zero, I wonder if I killed the yeast, and felt better as a result.
Being careful with your diet is really important, so it's good you're doing that. I often think that if I had been on this diet when I was on my initial course of antibiotics, I might have gotten better instead of having to enter the chronic phase, when it's much harder to get rid of.
- VERY VERY true!! I can't seem to get this point across to people on this board!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Keebler, endoscopy of the small intestines is usually the best for Celiac Diagnosis.
You can test positive for the Celiac gene, but it does not mean your Cealic is "active". So you can have the gene and not have Celiac.
Posts: 844 | From CA | Registered: Apr 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Gold standard Celiac diagnosis requires a positive biopsy from the small intestine. However, it can take an average of 12 biopsies to get the diagnosis in those who do have Celiac because the damage can be spotty and is easily missed during the biopsy procedure.
Also, gluten sensitivity in the absence of Celiac Disease can lead to many symptoms that may overlap with Lyme symptoms.
Furthermore, many believe gluten and caseine to be pro-inflammatory proteins that hinder the body's ability to fight Lyme/coinfections.
And Lyme has the ability to "activate" Celiac genes (and also can activate non-Celiac Gluten Sensitivity genes).
I have one Celiac gene and one Gluten Sensitivity gene, and tested positive for gluten sensitivity in blood and stool testing. I found out I had a problem with gluten by trying a gluten-free diet for 6 months followed by a gluten challenge. Tests (blood test, biopsy) were negative for Celiac, but I was having symptoms that could have indicated gluten was a problem for me. This was prior to my Lyme diagnosis.
EnteroLab.com is where I had my genetic and stool testing done (no financial connections, just a happy customer).
-------------------- -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. Posts: 4167 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whitney,
Fortunately, years after a failed endoscopy, a doctor suggested a genetic test that was positive for celiac. It all made sense then.
The endoscopy failed for me, and it has for others who were unable to consume adequate gluten for a long period before and up to the test.
The doctor never bothered to tell me that I needed to be eating bread every day. By then, I'd figured out that wheat was likely what had sent me to the E.R. a few times and stopped it on my own but wanted to know for sure.
The failure of the doctor to prepare me resulted in a failed test. This is not uncommon.
If someone strongly suspects celiac, it's best to not try to consume a large amount for a test when there is a safer way.
Also, the drug used to knock out for the test, while maybe not the strongest anesthesia, is still not the best thing for any body.
The biopsy can MISS celiac that attacks other systems, such as the brain. Not every person with celiac has G.I. problems.
If someone has genetic celiac, it's best that they avoid gluten, especially since it can damage the brain and not necessarily have the usual warning G.I. symptoms. It can be doing damage that could be attributed to other causes.
Of course, it's unlikely that a biopsy would be done for someone who did not have stomach symptoms.
Another key to genetic testing is that blood relatives can then be alerted for testing that could turn out to be life-saving.
Not sure of the cost differences but my guess is that the genetic test could be cheaper in the long run and less stress on the body. Those with lyme can be adversely affected by the stress of even a "simple" stomach biopsy.
I was so much worse for a couple months afterward, just from the stress on my body from the surrounding stimuli, drug - even though it was done in a quiet room with subdued lighting. But, at that time anything clobbered me.
Most do just fine with it but, for those who are more affected by Rx, stimuli and exhaustion, it's a consideration.
Because lyme treatment involves so many drugs and the liver & kidneys take such a hit from infection and treatment (and liver & kidney support can only do so much), I just think it's always best to avoid all other drugs, unless absolutely necessary. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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