Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Dr Is Testing Me For Lyme And Lupus


mythreesuns

Recommended Posts

mythreesuns Contributor

and other auto-immune stuff.

This is my primary dr, and he's still working under the assumption that I don't have issues with gluten. I called him today because the pain has gotten progressively worse all week, especially this morning. I could barely walk to the bathroom this morning!

What's the likelihood that all my symptoms (migraines, arthritis, diarrhea, bloating and gas, etc.) could be attributed to one of these conditions: Lupus, Lyme, RA


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



Celiac.com Sponsor (A8-M):



rinne Apprentice

I don't know so much but I do know that is true for Lyme.

kabowman Explorer

I was tested for all that too, after going gluten-free and my doc supported that, except all she said was, great, glad you figured it all out, well thanks.

Anyway, they still watch my thyroid occasionally but, I was treated for lyme disease by a dermatologist, even though all the tests came back negative, for 6 months and I got better - I didn't think it would work, I didn't think it was lyme, I really suspected lupus or RA, and I quit taking the meds when I got better and haven't gone back to the doc. Now, I do have some other lingering side effects but not bad and not worth worrying about.

Either way, the tests are often false negatives and if you are having problems, in addition to the gluten intolerance, keep looking. Another thing I figured out was, I cannot have hardly any sugar and it really causes me to have a lot of ups and downs.

Once I figured out ALL my food issues, my joint pain went away. My rashes are under control by my allergist (rosacea and eczema). I almost hate getting ready in the AM now, 4 different creams, ointments, and gels but they work.

Nancym Enthusiast

Lyme disease is very tricky to find once it has been in the body for awhile. It leaves the blood and goes elsewhere. If you suspect you have it, you should probably try to find someone extremely knowledgeable about it.

imsohungry Collaborator
Lyme disease is very tricky to find once it has been in the body for awhile. It leaves the blood and goes elsewhere. If you suspect you have it, you should probably try to find someone extremely knowledgeable about it.

I agree with NancyM. Finding an extremely knowledgable dr. is important in dx. any autoimmune disease (because the symptoms mimic those of other illnesses and are often not easily pinpointed by simple bloodwork). Can you be referred to a rheumatologist? If you have a PPO insurance plan, you may not even need to be referred. Good luck to you! :) -Julie

mythreesuns Contributor
Can you be referred to a rheumatologist?

The dr said if anything iffy shows up on all the bloodwork he's referring me to a rheumatologist. I USED to have a PPO but now I have an HMO. :(

But I have a fairly good primary who listens and is willing to refer if he thinks something is over his head.

up-late Rookie

My old doc tested me for these when I was ending up in his office twice a week with the same symptoms. Mine came back negative, but then he told me I didn't have osteo-athritis either when the specialist showed me my x-rays and they clearly showed I did. :angry: Press him to continue tests or refer you. Don't let him fob you off.


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



Celiac.com Sponsor (A8-M):



mythreesuns Contributor
Press him to continue tests or refer you. Don't let him fob you off.

My dr's been pretty good so far. He's already confirmed arthritis from the x-ray on my toe; this was before everything ELSE started hurting, so he is not taking the pain lightly. He's already pointed out that some things don't make sense; I'm young for osteoarthritis which seems to making him curious about what's giving me the arthritis, and I didn't develop migraines until I was 31, which is very uncommon.

I have a feeling I'll end up with a rheumatologist. I'll make sure of it. :P

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...