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

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

  • 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. Adeling
      - Adeling commented on Scott Adams's article in Product Labeling Regulations
      2

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

      What's missing, for me, from this article, is a timeline for implementation in countries. Western countries are often quite slow to implement, and some countries I've been to have no labelling whatsoever...
    2. Sue7171
      - Sue7171 replied to Ginger38's topic in Related Issues & Disorders
      24

      Shingles - Could It Be Related to Gluten/ Celiac

      My husband just had shingles going on 7 weeks now. We had been putting Vaseline on the blisters and lidocaine cream and he was prescribed an antiviral. Also he still has the nerve pain it was bad and is getting better it is his upper left torso. His dr prescribed gabapentin 300mg 3x a day and he's also taking naproxen 500ng 2x a day and tylenol 1000mg every...
    3. sc'Que?
      - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      2

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

      This is FANTASTIC--especially that they are recognising barley and (potentially) oats as sources of gluten/contamination! Now if only we can get labeling guidelines to clarify "spices" and "natural flavors" for those of us with other severe allergies.
    4. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

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

      Labs ? Awaiting in person follow up with my GI

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,176
    • Most Online (within 30 mins)
      7,748
    sandragonez962
    Newest Member
    sandragonez962
    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

    • Sue7171
      Shingles - Could It Be Related to Gluten/ Celiac

      By Sue7171 · Posted

      My husband just had shingles going on 7 weeks now. We had been putting Vaseline on the blisters and lidocaine cream and he was prescribed an antiviral.  Also he still has the nerve pain it was bad and is getting better it is his upper left torso. His dr prescribed gabapentin 300mg 3x a day and he's also taking naproxen 500ng 2x a day and tylenol 1000mg every 6 hrs. Hope this helps  The lidocaine cream is by tylenol and is available in a large tube on Amazon or at Walmart 
    • xxnonamexx
      What's your daily meals? Protein bars?

      By xxnonamexx · Posted

      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
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      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
      Labs ? Awaiting in person follow up with my GI

      By Seabeemee · Posted

      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
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      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.
×
×
  • 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.