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

Question For Those With Lyme


DingoGirl

Recommended Posts

DingoGirl Enthusiast

Hi everyone,

I have a friend of a friend who's fought a long battle with MS, but I suspect he may have Lyme.

As I recall from my reading here over the years, there is only one lab that can accurately test all the bands for Lyme and etc.

Can anyone give me quickly the name of that lab?

Thanks so much. :)


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



Celiac.com Sponsor (A8-M):



nikki-uk Enthusiast
Hi everyone,

I have a friend of a friend who's fought a long battle with MS, but I suspect he may have Lyme.

As I recall from my reading here over the years, there is only one lab that can accurately test all the bands for Lyme and etc.

Can anyone give me quickly the name of that lab?

Thanks so much. :)

Pretty sure it was Igenex

Open Original Shared Link

I'm sure one of the Lymies will verify.....

DingoGirl Enthusiast
Pretty sure it was Igenex

Open Original Shared Link

I'm sure one of the Lymies will verify.....

that's IT! and the Brit gets it right!!

thanks, Nik :)

  • 3 weeks later...
still tiredofdoctors Rookie

Susie,

IgeneX caught all four of my tick diseases: Lyme, Babesia, Bartonella and Erlichia.

Oddly, my veterinarian told the MD's YEARS ago that I needed to have the type of testing that they do -- he mentioned specifically the Erlichia because of the way I was walking.

Please tell your friend that it is important to use a laboratory such as IgeneX because of the dual-testing protocol they have. In the very beginning, I was (reluctantly) given a generic "is there any Lyme in the blood" test which returned a false negative -- which will up until two years after initial disease contraction.

You know my history . . . which so STRONGLY mimicked MS. Best of luck to your friend.

Lynnie

Jestgar Rising Star
Oddly, my veterinarian told the MD's YEARS ago that I needed to have the type of testing that they do -- he mentioned specifically the Erlichia because of the way I was walking.

Lynne, how could he tell? What about your walking tipped him off?

Judyin Philly Enthusiast
Lynne, how could he tell? What about your walking tipped him off?

Great question Jess? I'd love to know too

Lynne, i didn't know you had lyme? When in the heck did you get that dx?

Judy

still tiredofdoctors Rookie

Honest to goodness, I don't KNOW how he knew by my walking! I forgot to ask him! I was to the point of using the walker - not in the wheelchair yet - and while, yes, I definitely had a typical "widened" cerebellar gait, I did have some unusual characteristics to it. My doctor and I once joked that it was a cross between "Herman Munster" and a "Royal Lippizon Stallion"! Maybe that was it . . .

I was finally diagnosed when I saw Mtndog's doctor in NYC in December. He said just recently that had I not seen him when I did, I probably would not have seen this last birthday in March. I was having seizures 3-5 times per day, each lasting 20 minutes. He said eventually my heart would have stopped during one of them. Scary stuff, huh?

Because I seroconverted to the neurogenic Celiac (because of the Lyme), I'll always have to be gluten-free. There's no getting around that. He has discussed that with me, also. We have toxic mold in our house and are living with my mother until we can get SOMETHING figured out with regard to the house (it has to be burned to the ground), but the mycotoxicosis I developed (again because the Lyme took away my ability to fight it) is what caused the white spots on the gray matter of my brain.


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



Celiac.com Sponsor (A8-M):



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. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

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

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.