posted
found out that my levels are completely off with b12 and d. I forgot that my previous dr had given me b12 injections for may fatigue and it worked so here I go.. I can deal with all of the lyme stuff except for the fatigue...
Posts: 153 | From Tampa | Registered: Jul 2013
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posted
Two important things! I supplement D3 every day even though I spend half my time in Florida! Both those could help the fatigue.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I learned something new this week about low B-12 and low Vit D levels from an unexpected source -- namely, a book entitled "Gluten Freedom" by celiac expert Alessio Fasano, MD. The cause became obvious after I thought about it. Here's why.
Both Vit B-12 and Vit D are absorbed from a very small area in the upper small bowel, and when that area has been damaged by celiac or gluten intolerance, then proper absorption of these two vitamins cannot occur.
Simple answer, and I'm chiding myself for not having figured it out before now.
Here's the catch though. Diagnosing ceiiac and/or gluten intolerance is almost as difficult as diagnosing Lyme disease because of all of the many different reasons for false negative test results.
Whenever celiac is suspected, most doctors will suggest a blood screening test to rule it out, but herein lies the catch because of the chance that the blood screening tests will miss many cases, thereby denying those patients the opportunity for more advanced testing.
You are probably wondering about a trial elimination diet, but there are at least two very good reasons why it's better not to do it that way, instead of seeking lab testing first.
1.) Patients who are extremely sensitive to gluten will likely fail a trial diet, but it's too complicated for me to explain how and why this happens so I won't bother trying.
2.) It will be even more difficult to diagnose celiac later if one has not been eating gluten prior to testing for it -- whether by means of a blood screening test or by means of an intestinal biopsy because that damage can heal quickly enough that the test results could be skewed. NOT a good idea, obviously.
At any rate, the point of this message is not to overlook the possibility of intestinal damage, leading to malabsorption of vital nutrients such as Vit B-12 and/or Vit D, because of gluten intolerance. It's more wide-spread than one might suspect, and it's something that many doctors ignore, too.
One last kicker: Not everyone who has celiac has GI symptoms. Some folks have neurological symptoms or other symptoms unrelated to the GI tract, so don't just assume that because you don't have obvious Gi symptoms that you might not have a problem with dietary gluten.
Posts: 4563 | From TX | Registered: Sep 2002
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Would you also have to be eating gluten for one of those tests for genetic markers to come back positive?
I would think not, but I'm not sure. Not necessarily the ones by 23andme but the ones a doctor would run.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Lymetoo, The genetic test is the only test which is not influenced by diet. Good question. Glad you asked because I'm pretty sure that several others probably had the same question too.
Posts: 4563 | From TX | Registered: Sep 2002
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The good news is that you do not need a doctor's signed lab order to request it because it's a cheek swab test, meaning that you can order the test kit and collect the sample in the privacy of your own home.
By ordering the test privately, this keeps it out of your medical records which can be a big advantage in these uncertain time regarding private medical insurance. Rates for pre-existing conditions are bound to go up, I expect.
The current thinking is that if you do not have one of the two genes for celiac, then you cannot have celiac.
FYI, 23andMe does NOT test for both celiac genes -- only just for DQ2, which is the more common one, which 95% of celiacs carry. DQ8 is not on their test panel, and this has caused a lot of confusion for folks who rely on 23andMe for answering whether or not they might be carriers of celiac.
Remember, you can have the gene but not have celiac unless the gene has been "turned on", but you will always be at risk for developing celiac at a later point in life if that gene ever becomes activated.
Posts: 4563 | From TX | Registered: Sep 2002
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