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

So Very Depressed Today


JH85

Recommended Posts

JH85 Rookie

So not only did I finally get blood drawn yesterday to get an official diagnoses after most symptoms clearing after going gluten free. My doctor is pretty convinced, as am I, that I also have ataxia which I hear can be brought on by celiacs disease. Also I have been on lithium for about 8 years and as of 3-4 months ago it has been increased and high levels of lithium can also cause Ataxia, as can a lack of b12 which I also have had within the last 3-4 months. I am going to see a neurologist as soon has he calls me that is. To get a look inside to see a) if i actually have anything up there. B) if its ataxia and c) my doctor says there is a chance it could be early on set MS. :( :( :( :( just needed to vent to someone who won't spread it around the tiny town I live in until things are fully understood. Thanks guys


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

How long have you been gluten free? If it is more than a day or two it is likely your test will be a false negative. Even on a full gluten diet there are high rates of false negatives.

Ataxia is tough and it does have symptoms that are very similiar to MS. I was thought to have MS for quite a while. The good news is that gluten free your ataxia should get some relief if not disappear totally but it does take some time.

Celiac can also cause issues that include symptoms that are bipolar like. Those also may resolve gluten-free. But again it does take time and being really strict with the diet.

It took about 6 months for me to see relief in the ataxia but I had been ataxic for many years before diagnosis. Mood issues for me resolved much more quickly although I do still have some problems they are due to life situations and are much less severe now most of the time.

Do address the low B12, if your doctor has not put you on injections get some for sure gluten free sublingual B12. Your damaged body won't absorb it through swallowed pills but the sublinguals go into your system through the mucous membranes in your mouth bypassing the damaged gut.

I know things are tough right now but don't give up. There are high rates of false negatives with testing so do give the diet a good strict try for a few months even if testing is negative.

cyberprof Enthusiast

Ravenwoodglass is exactly right and she is the right person to advise you because she's been where you are. There are others here who had "diagnoses" of bipolar, MS or ataxia who had full or partial relief - so Raven is not the only one who had good results.

Hang in there. I second the sublingual B12: I find that if I skip it for a few days, I can really feel that my energy is down and that I am "off". If your small town doesn't have it, you can probably order it online.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,159
    • Most Online (within 30 mins)
      7,748

    Laz
    Newest Member
    Laz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
    • Scott Adams
      You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.
×
×
  • Create New...