I'm being treated for Lyme disease, My GP did a test for celiac disease that turned out to be a 8.6, normal range is 1-10 for this test. The test was classified as a weak positive. My GP said not to worry about it but the Lyme Dr. said "you have celiac disease as well as lyme" who should i believe. I'm surprised i tested high at all because i avoid gluten.
Posted by Keebler (Member # 12673) on :
- Your LLMD is correct.
You need a better educated GP. Be sure to obtain a copy of that test for your personal file.
Contact your local chapter for CELIAC support groups to find a doctor to do genetic testing. Just hunt around on the web to find that.
I suggest further testing for the purpose of accurate medical records in an emergency, you might get a blood test for the genetics piece - You can be on a GF diet for that test.
A genetic test will help to replace your GP's milquetoast dx which will be in your file as gospel until a better test can replace it.
For celiacs, even a trace of gluten can even cause seizures. In an emergency, say in a hospital setting, it would even more important for you to be gluten free. And some drugs contain gluten, so you'd need documentation.
In the meantime, any new doctors, be sure to state Celiac up front so it's recorded in your file.
Yes, you need to remain on a GF diet. Good for you. But you may still be getting gluten from some hidden sources.
actually, you testing 'weakly high' is probably because you avoid gluten. If you ate a "standard" Western diet full of wheat, you'd possibly test higher. It seems like a really common problem for people with Lyme, anyway, and it's not a bad idea to avoid gluten if you can.
Posted by Keebler (Member # 12673) on :
- Another procedure done with the patient not being told to eat gluten for a certain time period before the procedure for the test to be as accurate as possible.
I had the GI biopsy done, I had been GF for a long time prior. It was negative. But, years later, I had a smart GP who said they should have never done that test on me without my having consumed gluten daily for weeks prior.
Because she knew I could not eat gluten long enough for a repeat GI biopsy, she did a genetic test with my blood: Bingo.
As I recall, there are markers with letters like "DR" and DQ" and certain numbers, when coded this way or that, tell a story. My test was actually done through the American Red Cross for a special project. If your insurance won't cover a genetic test, contact them - or your local celiac support group for ideas. -
Posted by 1hunter (Member # 24438) on :
thanks for all the info. it was helpful. I'm going to see the Dr. again tomorrow to discuss more testing. Is there a differance in having celiac disease or being gluten sensitive?
Posted by Keebler (Member # 12673) on :
- If you go back to that same doctor, you will get the same answer. If that doctor messed up by not telling you to consume gluten so that the test would be more accurate - or doing a different test - I could never trust that doctor again to be right.
Oh, but I see the appt. is for Monday and it's too late to cancel. Maybe he will run the genetic test if your remind him you've been off gluten for so long and the test had nothing to test really but still showed high for someone who is GF.
The reason for a genetic test would be in case of emergency so that medical staff did not administer medicines that contained gluten. It would also help you better clarify your path.
Then, also talk to your LLMD about this, instead. He/she may know of some GP who is more aware of celiac/gluten issues.
Also check at the celiac support groups for your area. They can direct you to doctors who are more educated in this.
Q: " . . .a differance in having celiac disease or being gluten sensitive? . . ."
Seems to be. there can be a difference in genetic celiac and celiac that is acquired by infection, too, in terms of possible healing.
And that may be why a genetic test would be a good idea. But, with lyme, many are very sensitive to gluten whether or not they are celiac. Avoiding it is a huge advantage to success and consuming it can bring down even the best treatment protocol and lean toward failure with lyme winning.
But, we just don't know all there is to know yet about gluten and the effects on the entire body.
Here is what I suggest: Find a truly knowledgeable doctor. Get the genetic test. But, regardless of what it says, continue being gluten-free through the course of lyme treatment.
Then (if you did not have genetic celiac) you may choose to wisely add in some whole grains that may have gluten. You would check the ALLERY IMMUNE thread first as there are ways to work with the immune system before reintroduction.
Still, there is a lot to what the wise GP I had does. She does not have to but chooses a GF diet because it makes her feel so good.
Remember, too, that many GF foods are still just junk. You don't want highly processed, sugared stuff. Go for whole foods.
There are many nutritious whole grains. Start here with QUINOA:
Mary's Gone Grackers - Whole grain GF crackers in many flavors.
------- Find brown rice pasta (Tinkyada or Trader Joe's) for small servings occasionally.
It's higher on the glycemic index than a whole grain like Quinoa but it can be a very nice treat now and then, balanced with LOTS of vegetables and a good protein - and extra virgin olive oil. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by 1hunter: [QB] thanks for all the info. it was helpful. I'm going to see the Dr. again tomorrow to discuss more testing. Is there a differance in having celiac disease or being gluten sensitive?
yes, but the diet is the same.
Go the celiac.com site GWB gave you. It's great. Be sure to print off the lists of "avoid" foods and "OK" foods.
also go to www.dogtorj.com and look on the left for "Gluten Intolerance in Dogs and Cats" .. click on that and then click on the 3rd (?) article called "The Battle of Helm's Deep."
It explains why you should be gluten free.
Posted by lyme2health (Member # 19981) on :
1hunter,
If you have lyme, you need to help your body as much as possible because it has a lot of hard work to try to erradicate this disease.
One of the most important things you can do to help, is to avoid food that cause you imflammation. and for you right now that includes gluten.
Search for other gluten free posts on here. You'll see how many people have so much more energy after going gluten free. I'm one of them!
So from my personal experience, I say cut out the gluten. And all of it. I cut out 85% for 2 months and then 100%. I hadn't noticed much change at 85%. Within 2 weeks of 100% gluten avoidance, my energy jumped dramatically.
Posted by Lymetoo (Member # 743) on :