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

Suspect Celiac, no medical access, options?

firewrangler

Recommended Posts

firewrangler Newbie
firewrangler
Posted

Hi everyone, I'm new here!  So, I'll just give the short version first, and we can go from there.

 

I'm a 46 year old man who has had mysterious health issues my whole life, but only recently began to suspect dietary causes.  I am now quite sure that most of my issues for the last 40 years have been related to wheat, and now I am reacting to at least one form of Corn as well, as best I can tell on my own here.

 

I'm part of the US demographic that has fallen between the cracks in the medical system, and I have never felt like I had the luxury of medical help.  This is something I intend to work through in the coming months, as it's obvious to me I need some help here. 

That said, I've read enough to know I would like to initiate the testing procedure.   Has anyone had any experience with using a walk-in clinic or the like to take the samples and handle the transfer to the labs to get the testing done?  I am imagining I could just walk in and get blood taken and instruct them which labs and what tests and be done with it, but.....?  I dunno, maybe it won't work that way. 

At any rate, it's going to be a long, difficult process for me to figure out regular health care, and in the meantime, I'd like to figure out what's killing me here! 

 

Any advice is welcome!

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

I had my original tests done through this lab without going through a doctor (supposedly one reviews the results before they are posted).  They don't operate in every state so don't know if it would help you or not.  

Open Original Shared Link

Good luck getting tested and getting answers!

firewrangler Newbie
firewrangler
Posted
  • Author
12 minutes ago, RMJ said:

I had my original tests done through this lab without going through a doctor (supposedly one reviews the results before they are posted).  They don't operate in every state so don't know if it would help you or not.  

Open Original Shared Link

Good luck getting tested and getting answers!

Thank you so much!  Checking it out now....

 

Wow!  It looks like it is available here.

 

So, did you do the "Celiac Complete?"  I think this might be my solution, although the thought of another intentional poisoning is scary right now.  I can't shake the one I gave myself on the New Year.  I suppose I might as well keep the inflammation party going though, as long as I'm not 100% anyway.

 

Thank you thank you!

 

 

bartfull Rising Star
bartfull
Posted

I too fall through the cracks. I knew gluten was a problem for me so I came here and learned how To avoid CC, went completely gluten-free, and saw my symptoms clear up. Later on a great free clinic opened here (for a while - they are gone now. :( ) and the doctor there, based on family history (Mom was a diagnosed celiac), and resolution of symptoms, gave me an official diagnosis.

Now, years later I am going through some unrelated and serious health problems. I had no choice - I HAD to see a doctor. I have paperwork to take back to my next appointment to see if I can get a break on fees. (The last visit cost over a thousand dollars!) Either way, I'll be setting up a payment plan and they're only going to get 20 bucks a month. I'll be in debt for the rest of my life but it's better than dying.

All that being said, my advice is, if you can possibly get an official diagnosis, DO IT! :)

firewrangler Newbie
firewrangler
Posted
  • Author
11 minutes ago, bartfull said:

I too fall through the cracks......

Thank you so much for that, I have been struggling for six weeks and just found you all.  I suppose you probably know how it feels to finally have some understanding people to communicate with here.

 

It's lovely to hear I'm not alone, both in the condition and difficulty with our care system.  Thank you!

kareng Grand Master
kareng
Posted

Depends on your state....you may be able to just walk into a blood draw place, like a Quest diagnostics, and order it yourself.  Just be prepared to pay at the time of the blood draw, if you have no insurance.  Other states, you might have luck at one of those walk- in clinics.  You might have to call around and see.

kareng Grand Master
kareng
Posted

Oh... Have you been gluten free for a while?  The tests don't work if you haven't been consistently eating a gluten containing diet.  It's usually recommended from 6-8 weeks.  It's possible, if you had a really high number of antibodies, that they would still be there, but I wouldn't base my diagnosis on it.

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

Celiac.com Sponsor (A8-M):


firewrangler Newbie
firewrangler
Posted
  • Author
36 minutes ago, kareng said:

Oh... Have you been gluten free for a while?  The tests don't work if you haven't been consistently eating a gluten containing diet.  It's usually recommended from 6-8 weeks.  It's possible, if you had a really high number of antibodies, that they would still be there, but I wouldn't base my diagnosis on it.

Thank you for your help!

 

Yes, I have been toying with gluten free for the last 8 months or so, on and off and without much intent at first, then.....same old story.  I understand I need to be eating gluten before initiating the tests.

I will call the walk in clinic this week and see what they say for sure.  Thank you so much for the input!

SLLRunner Enthusiast
SLLRunner
Posted
8 hours ago, firewrangler said:

Hi everyone, I'm new here!  So, I'll just give the short version first, and we can go from there.

 

I'm a 46 year old man who has had mysterious health issues my whole life, but only recently began to suspect dietary causes.  I am now quite sure that most of my issues for the last 40 years have been related to wheat, and now I am reacting to at least one form of Corn as well, as best I can tell on my own here.

 

I'm part of the US demographic that has fallen between the cracks in the medical system, and I have never felt like I had the luxury of medical help.  This is something I intend to work through in the coming months, as it's obvious to me I need some help here. 

That said, I've read enough to know I would like to initiate the testing procedure.   Has anyone had any experience with using a walk-in clinic or the like to take the samples and handle the transfer to the labs to get the testing done?  I am imagining I could just walk in and get blood taken and instruct them which labs and what tests and be done with it, but.....?  I dunno, maybe it won't work that way. 

At any rate, it's going to be a long, difficult process for me to figure out regular health care, and in the meantime, I'd like to figure out what's killing me here! 

 

Any advice is welcome!

Firewrangler,

Have you contacted a doctor lately with your concerns? Specifically asked for testing? 

RMJ Mentor
RMJ
Posted
13 hours ago, firewrangler said:

So, did you do the "Celiac Complete?"  I think this might be my solution, although the thought of another intentional poisoning is scary right now.  I can't shake the one I gave myself on the New Year.  I suppose I might as well keep the inflammation party going though, as long as I'm not 100% anyway.

 

I did the Celiac Basic, I don't see Celiac Complete but they may have different tests in different areas.  Unfortunately the basic doesn't include DGP.

firewrangler Newbie
firewrangler
Posted
  • Author
10 hours ago, SLLRunner said:

Firewrangler,

Have you contacted a doctor lately with your concerns? Specifically asked for testing? 

Hi SLrunner.  No, I am just starting to learn about all of this, and am only now understanding that perhaps I have an issue.  I don't really know how to or have the means to access medical care, but I am thinking maybe it's time to start working on that. 

To be honest though, I don't expect that locally I'll get any help for all the trouble of sorting it out.  I live in a small town and....well, I could go on and on, but, no.  I have not seen a doctor.  I wish I could, but....

firewrangler Newbie
firewrangler
Posted
  • Author
1 hour ago, RMJ said:

I did the Celiac Basic, I don't see Celiac Complete but they may have different tests in different areas.  Unfortunately the basic doesn't include DGP.

Thanks RMJ.  The Complete includes the Anti-Gliadin Anitbodies testing as well, for Gliadin Ab IgG, IgA.

I need to think on all of it, since I have to gluten up to get tested either way.  I'm not sure I can do that again right now, and it appears the end result of diagnosis vs. no diagnosis is exactly the same.  The only reason I can find for myself is to try to convince my brother to get tested, but otherwise, I'm not sure there is any benefit to me at this point.  We'll see.  I might wait until I get poisoned again accidentally and then just roll with it.  I dunno, I'm struggling! 

 

Thanks for all the help so far!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,075
    • Most Online (within 30 mins)
      7,748
    Judy Taylor
    Newest Member
    Judy Taylor
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      @KRipple, thank you for the lab results from your husband's celiac disease blood antibody testing. The lab result you share would seem to be the tTG-IGA (Tissue Transglutaminase IGA) and the test result is in excess of 10x normal. This is significant as there is an increasing tendency for physicians to grant a celiac disease diagnosis on the basis of antibody testing alone when the scores on that particular test exceed 10x normal. This trend started in the UK during the COVID pandemic when there was tremendous pressure on the medical system over there and it has spread to the USA. The tTG-IGA is the centerpiece of celiac disease blood antibody testing. All this to say that some doctors would grant a celiac disease diagnosis on your husband's bloodwork alone and not feel a need to go forward with an endoscopy with biopsy. This is something you and your husband might wish to take up with his physicians. In view of his many health issues it might be wise to avoid any further damage to his small bowel lining by the continuing consumption of gluten and also to allow healing of such to progress. The lining of the small bowel is the place where essentially all of our nutrition is absorbed. This is why celiac disease when it is not addressed with a gluten free diet for many years typically results in additional health problems that are tied to nutritional deficiencies. The millions and millions of tiny finger-like projections that make up the nutrient absorbing surface of the small bowel lining are worn down by the constant inflammation from gluten consumption. In celiac disease, the immune system has been tricked into labeling gluten as an invader. As these finger-like projections are worn down, the efficiency of nutrient absorption becomes more and more compromised. We call this villous atrophy.   
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
    • Jmartes71
      Celiac pain relief

      By Jmartes71 · Posted

      Ginger is my best friend, it helps alot with tummy issues..
    • aattana
      Positive gliadin (deamidated) IgG, normal everything else?

      By aattana · Posted

      Hi Phosphone, did you ever figure out what elevated your DGP?  I am in the same boat. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
×
×
  • Create New...