Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Is The Deal With Fibromyalgia?


floridanative

Recommended Posts

chrissy Collaborator

i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

is carpal tunnel connected to fibro? i am having so much trouble with it recently. i can't hold a book or magazine without my hands and wrists cramping. my fingers are starting to feel kind of clumsy, too.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor
i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

I don't know about carpel tunnel but you can call Igenex to get the paperwork for the lyme testing. The blood draw would need to be done early in the week M-W I think.

Open Original Shared Link

CarlaB Enthusiast
i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

Yes, but you need him to use IGeneX. Other labs aren't as experienced in Lyme testing because they don't do much of it. I had the test kit mailed to my house and took it to my doctor to do.

Plus, remember, like celiac, it's a clinical diagnosis. They use the blood tests to support diagnosis.

Rachel--24 Collaborator
i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

Make sure that if you get tested its not just by any "standard" lab your neurologist might use.

As previously mentioned all Lyme testing should be done by a lab which specializes in Lyme and has the greatest sensitivity....this would be Igenix.

As it is...Lyme is not easy to diagnose via testing....its still a clinical diagnosis based on symptoms because the tests arent 100% reliable. Igenix is the best available right now. Other labs have less than 60% sensitivity and give a large amount of false negatives.

One Dr.'s remark..

I have had patients covered in ticks or with a classic grossly obvious bulls-eye rash who, months after the rash, when seeking treatment were negative at many labs. Some of these well known labs have dummied down their results and testing because "they were getting too many positives."

The reason Igenix is considered the best is that its the only lab which has 13 proteins tested from 2 important strains representative of international Lyme.

The bacteria modifies itself...changing outer proteins....similar to how we change our clothing every day. The proteins have to be harvested at the lab...other labs do not harvest all these changing outer proteins.....which is one reason for false negatives.

All of these proteins represent specific parts of the bacteria...same way we each have a nose, mouth, ears, etc. Some labs might only be looking for the "nose"....Igenix is looking for 13 parts of Lyme.

Also...In order to be licensed in New York State you are sent clear negative samples and clear positive samples of Lyme proteins in blind tubes. Igenix results have been exceptional and approximately 100% year after year.

This info. came out of a newspaper article I just read today...and this is the reason if you're gonna bother with testing at all...I would recommend doing it with the best thats available as Lyme is a tricky bacteria which does a good job of hiding from the immune system. If antibodies against lyme are not available in the blood.....testing will be negative regardless of how severe the infection and regardless of which lab is running the test...including Igenix.

If the immune system is producing antibodies...Igenix is the best lab to pick these antibodies up as they are easily missed in other labs. Specific antibodies are directed to each part of the bacteria...so if a lab is *only* looking for antibodies against the "nose"....and these antibodies arent found in the blood...you could have a false negative.

Igenix is looking for antibodies against 13 parts of Lyme....increasing your chances of testing positive if indeed the bacteria is present.

Sorry for the lengthy explanation but thought that some might wonder why it matters which lab performs the test. :)

chrissy Collaborator

which test kit do i need to order to bring to the doc?

AndreaB Contributor
which test kit do i need to order to bring to the doc?

Carla or Rachel will have to answer this one. I know they are Western Blots but don't know anything other than that.

I wanted to invite you (and anyone else interested) over to the OMG thread if you'd like to join everyone over there. Basically people on that thread are dealing with issues that don't resolve with gluten free alone. The main issues seem to be lyme, mercury toxicity, candida, molds.....that type of thing. If you come over just jump in and ask questions and learn from the others and share what you've learned as well. :)

Rachel--24 Collaborator
which test kit do i need to order to bring to the doc?

My Dr. only uses Igenix for Lyme testing so I never had to order the tests myself. The first tests he ordered for me were the Western Blots. There are two....IgM and IgG.

Carla ordered her own and brought the kit to her Dr. I believe. Not exactly sure which panel she ordered.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

IGeneX will just send you the box that you will mail it back to them in with the vials for the blood in it. You can choose the test after you get the box.

I got the complete initial panel. You need to at least get the two Western Blots.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

    2. - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

    3. - Wheatwacked replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

    4. - trents replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,065
    • Most Online (within 30 mins)
      7,748

    Maria A
    Newest Member
    Maria A
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • yellowstone
      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
    • Wheatwacked
      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have you been supplementing Iron? How are your liver enzymes? Low levels of ferritin indicate iron deficiency, while  59% transferrin saturation indicates high iron levels.  Possibly indicating Fatty Liver Disease.  Choline is crucial for liver health, and deficiency is a known trigger for Non-Alcoholic Fatty Liver.  Some experts say that less than 10% eat the the Food and Nutrition Board established Adequate Intake that are based on the prevention of liver damage. Severe constipation and hemorrhoids may be linked to a bile or choline deficiency.  "Ninety-five percent of phospholipids (PLs) in bile is secreted as phosphatidylcholine or lecithin."  Fatty acid composition of phospholipids in bile in man   Deficiency of these bile salts causes the bile to get thick. Some people with Celiac Disease are misdiagnosed with Gall Bladder bile issues.  Removal of the gallbladder provides only temporary relief. Whether or not celiac disease or NCGS are your issues you need to look at your vitamin D blood level.   
    • Churro
      Thanks for your input. 
    • trents
      If you have hemorrhoids 1x weekly I don't see how you have time to heal from one episode before you experience another one, unless each one is a very minor event. Have you consulted a physician about your hemorrhoid issue? It's not normal to be having an episode every week unless it is really one episode that is not completely healing between weekly flareups.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.