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. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    3. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,257
    • Most Online (within 30 mins)
      7,748

    Gabs
    Newest Member
    Gabs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
×
×
  • 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.