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. - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

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

      Labs ? Awaiting in person follow up with my GI

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

      Labs ? Awaiting in person follow up with my GI

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

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

    • Total Members
      133,169
    • Most Online (within 30 mins)
      7,748

    Annette Hill
    Newest Member
    Annette Hill
    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
      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • 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.