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

Celiac's: Get Tested For Lyme!...


tailz

Recommended Posts

tailz Apprentice

You all have to read this. Anyone who has been diagnosed with "Celiac's" needs to be aware. I'm getting tested. This is too scary...

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

Good luck with the testing. I've heard that Lyme disease can be hard to find in the blood after awhile.

Lymetoo Contributor

With the tests almost ALL drs use, it's unlikely Lyme will be found. Some of those tests are terribly inaccurate.

Johns Hopkins.... testing for Lyme inadequate

Open Original Shared Link

If you decide to get tested, your best choice in labs is Igenex Labs in CA. You may have to pull strings to get tested through them. The dr is the biggest obstacle. Most will refuse to use this lab.

here is more info:

More info:

Open Original Shared Link

Wild Condor's Links and information:

Open Original Shared Link

Chrisser Explorer

That article will scare anyone. The biggest thing missing from Lyme Disease that is found with Celiac is the digestive and intestinal issue. I had Lyme Disease when I was younger, and I went 9 months undiagnosed. I didn't get the rash when I got bitten, but I was able to link it back to flicking a little bug off my hip when I was changing out of my bathing suit after the beach one day. I was fortunate enough to have had a mild case, as the only symptoms I had were horrible fatigue and muscle aches. A friend of mine, however, had to have IV antibiotics because she had a more severe case. I wouldn't mistake Celiac for Lyme Disease, but if it would make you feel more comfortable getting tested then talk to your doctor about it.

Here's another link for you:

Open Original Shared Link

-----------------------------------------------------------------------------------------------------------------------------------------------

EDIT:

OK, I could definitely be wrong about this...I didn't do enough reading before I posted.

Still sounds fishy to me, though.

rinne Apprentice

Lyme Disease can affect the digestive system.

Thanks for posting the article. It is long and wordy but for anyone who is feeling lost and overwhelmed with the number of symptoms they have it is well worth the read.

It is funny how we come to learn things, perhaps five years ago my sister was diagnosed with IBS and Celiac and I remember noting that Celiac was that wheat thing and that I probably had it but since I already avoided bread I really didn't need to look too closely at it. After all, I knew that if I ate bread I didn't digest it and the rare times I did I simply increased my ground flax seed and moved it through. Now I understand how much damage I was doing to myself by doing that. :(

A friend was telling me recently that when she first became seriously ill she thought she had Chronic Fatigue Syndrome and was participating in an on-line support group for CFS but occasionally she would visit the Lyme Board and there was a woman there who repeatedly told her she thought she had Lyme. My friend would say no and go away for awhile but she kept going back and eventually she did get tested and she did have Lyme. We hadn't spoken in twenty years when she got a hold of me this past winter and we've been talking about being ill, her Lyme and my Celiac/Gluten Intolerance and Arthritis and it never occured to either of us that I might have Lyme. I believe I am exhibiting that kind of circumstantial recounting that Lyme patients do, <_< Anyways we were discussing salt, iodine, the thyroid and the adrenal system and she offered to forward me an article on Salt but accidentally forwarded me the Salt/Vitamin C protocol for treating Lyme and I read it and I saw myself. I also realize that if I had read the article three years ago it wouldn't have occured to me that I had Lyme because it has only been in the past two years that I have had the later stage symptoms appear.

As I have said elsewhere I started using the salt/c as a diagnostic tool and have now had two herxes. I'm pretty much convinced I have Lyme and that it manifested in the area of my body that was weakest first. I have improved on a gluten and dairy free diet and won't return to it although maybe I am hoping for a little cheese. :)

As I read many people's stories here I see the possiblity for Lyme disease in their symptoms but I think it is one of the last places people go because there is so little information about it and how varying the symptoms can be. I also think that once our focus becomes food issues we can lose ourselves in the effort to modify our diets in hopes that by doing so we will get better.

Oh, and as a bonus the salt/c has given me back sleep, I am now sleeping close to seven hours a night which I haven't done in so many years I can't even remember. I have mostly slept for four or five hours and woken tired, I am actually feeling refreshed when I wake up.

Hope I didn't hijack this thread too badly. I really appreciate the effort you are making to bring this information forward. :)

Lymetoo Contributor
Here's another link for you:

Open Original Shared Link

-----------------------------------------------------------------------------------------------------------------------------------------------

EDIT:

OK, I could definitely be wrong about this...I didn't do enough reading before I posted.

Still sounds fishy to me, though.

What sounds fishy??? :unsure:

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,823
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.