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

Celiac blood test diagnose help

Sarah Rose
 Share

Recommended Posts

Sarah Rose Newbie
Sarah Rose
Posted

Hi I am new to all of this and been suffering for years. Been diagnosed with Gout, inflammation in joints and inflammation throughout my body and after a night in ER with all the symptoms of celiac, was told I could be gluten intolerant and must have the celiac blood test. I was also told to give up gluten which I did and felt 100% better in two days 

I felt so good and no pain in my joints. I have now been told to eat gluten again for 6 weeks to get an accurate celiac blood test so it will highlight the gluten attacks in my body, but seriously, a few day’s into my 6 weeks I’m in agony again and awake at night with stomach pain and diahreha . I can’t go through 6 weeks of this. Do I really have to do this when I’m 100% sure myself that it’s celiac? Many thanks 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Some countries, for example, the UK, offer gluten-free food subsidies and follow-up medical care if you have an official diagnosis of celiac disease. If it applies, it is something to factor in. Otherwise, no, you don't have to submit to official testing and torture yourself by going back on gluten for 6-8 weeks of eating 2 slices of wheat bread daily or the gluten equivalent.

Wheatwacked Veteran
Wheatwacked
Posted
(edited)

Hi Sarah Rose,

2 hours ago, Sarah Rose said:

Been diagnosed with Gout, inflammation in joints and inflammation throughout my body

       Is your gout cured?  I had that pain and then gout on top of it. Gout is maybe the worst pain in the world. Short couse of Prednisone treatment worked in hours to reduce the pain from the gout and pain was gone the next day.  I had 10 days vacation from all pain. My younger brother also has been treated with prednisone short course for gout a few times.  Same results gout pain improves in hours and is gone the next day.  In my case the joint pains (fibromyalgia diagnosis) came back,  and I was back in bed unmoving 22 hours a day.   So I went back on 30 mg prednisone a day so I could function, until two years later started GFD.

Edited by Wheatwacked
Blue-Sky Enthusiast
Blue-Sky
Posted

I have gout although I have only had a few attacks. I was trying to find a food that was high in xanthine oxidase inhibitors. Red spinach fits the category well and you can eat lots of it. But also keep in mind that lowering uric acid to quickly can also cause an attack and that rapid changes in vitamin b12 status can cause an attack. A lot of gluten-free foods is higher in sugar and fat compared to other foods.

Right now I try to limit sugar and take extra thiamine.

It is totally up to you if you want an official diagnosis or not.  It doesn't sound like it is worth it, unless you need it for medical insurance or something like that.

Sarah Rose Newbie
Sarah Rose
Posted
  • Author

I forgot to mention that after being diagnosed with gout, when I stopped eating gluten all my joints pain stopped and I researched that gout can be caused by gluten 

Scott Adams Grand Master
Scott Adams
Posted

If you're 100% sure gluten is the cause of your suffering, and you can't stand to do a gluten challenge just to take a test to prove this, I see no reason for you to continue the challenge. Why damage your health to find out what you already know?

Sobiha Apprentice
Sobiha
Posted

Hi

Like you Sarah Rose I have not had an official diagnosis but I am not willing to make myself really ill again by ingesting Gluten. I am also can't believe how much better my joints feel after going gluten free nearly seven months ago. I thought the stiffness in my joints-particularly in my lower back-was due to my age and arthritis, but there has been a drastic improvement especially in the last few months. Even after a couple days spent working in the garden I didn't feel any significant stiffness.

Regards Sohiha

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

@Sarah Rose,

Have you thought about getting a genetic test to look for the Celiac genes?  

You don't have to consume gluten for a DNA test.  

Some doctors will make a Celiac disease diagnosis if one has any Celiac genes and shows improvement on a gluten free diet.

That's how I was diagnosed.  I got too ill to finish a gluten challenge.  

Sarah Rose Newbie
Sarah Rose
Posted
  • Author

I have heard of these so I guess if you had an accurate result they must be fairly reliable thanks 

Sobiha Apprentice
Sobiha
Posted
16 hours ago, knitty kitty said:

@Sarah Rose,

Have you thought about getting a genetic test to look for the Celiac genes?  

You don't have to consume gluten for a DNA test.  

Some doctors will make a Celiac disease diagnosis if one has any Celiac genes and shows improvement on a gluten free diet.

That's how I was diagnosed.  I got too ill to finish a gluten challenge.  

Hi

No, I hadn't thought about that. I'm in the UK and ive been waiting eight months for a hospital appointment. I'm going to contact my gp and discuss the possibility of such  a test. I know an endoscopy can sometimes reveal damage caused by gluten but as I've been gluten free since April  my intestines may have healed by now.

Sobiha

trents Grand Master
trents
Posted
(edited)
7 hours ago, Sobiha said:

 

Hi

No, I hadn't thought about that. I'm in the UK and ive been waiting eight months for a hospital appointment. I'm going to contact my gp and discuss the possibility of such  a test. I know an endoscopy can sometimes reveal damage caused by gluten but as I've been gluten free since April  my intestines may have healed by now.

Sobiha

Sobiha,

Genetic testing for celiac disease has value for ruling out celiac disease, not demonstrating that you have it. About 40% of the general population has one or more of the genes associated with celiac disease but only about 1% of the general population has active celiac disease. So, most people who have the genetic potential for celiac disease don't develop an active case of it. However, if you don't have the genetic potential for developing celiac disease, your symptoms would be due to something else. But if you do have the genetic potential for celiac disease and have or have had celiac disease symptoms before going gluten free - and it's not feasible to go back on gluten for testing-then it supports the conclusion that you are a celiac.

Edited by trents
Sobiha Apprentice
Sobiha
Posted
17 hours ago, trents said:

Sobiha,

Genetic testing for celiac disease has value for ruling out celiac disease, not demonstrating that you have it. About 40% of the general population has one or more of the genes associated with celiac disease but only about 1% of the general population has active celiac disease. So, most people who have the genetic potential for celiac disease don't develop an active case of it. However, if you don't have the genetic potential for developing celiac disease, your symptoms would be due to something else. But if you do have the genetic potential for celiac disease and have or have had celiac disease symptoms before going gluten free - and it's not feasible to go back on gluten for testing-then it supports the conclusion that you are a celiac.

Thank you

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,064
    • Most Online (within 30 mins)
      7,748
    Judymh
    Newest Member
    Judymh
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Vozzyv
      Weird Symptoms

      By Vozzyv · Posted

      Anyone else have intermittent left ear ringing and outer right ear pain? Both seem to happen in the evenings. 
    • cristiana
      Options - 7 year old boy - Helicobacter pylori and serology

      By cristiana · Posted

      If your son eventually becomes very symptomatic, that in itself will help keep him on the diet.  I had a friend who was diagnosed roughly the same time as me and she used to tell me a lot that she could get away with eating certain gluten containing foods.  (Not a good thing to do, but she did all the same).  In time she was unable to tolerate them anymore,  and is now very strict with her diet.   The football situation with the candy:   here in the UK at least, a lot of mainstream chocolate bars and sweets don't actually contain gluten (Bounty Bar, Snickers, Cadbury's Whirl, Crunchie etc) and you may find that that is the case where you live.      
    • jjiillee
      Daughter waiting for appointment

      By jjiillee · Posted

      Her appointment ended up getting canceled for today. So now we have to wait until Dec 3.
    • Scott Adams
      Daughter waiting for appointment

      By Scott Adams · Posted

      Let us know how things go.
    • Scott Adams
      Cross contamination issues with Food Processing Companies

      By Scott Adams · Posted

      Soy has been on our safe list for nearly 30 years, it is gluten-free. Most soy sauces do include wheat, and should be avoided. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.       In general if you see "gluten-free" on a label in the USA, Canada, Europe, Australia, etc., it does mean that the food is safe for those with celiac disease, and it does NOT mean that there is 19ppm gluten in it, as some people might lead you to believe. Whenever a company detects gluten in the 5-19ppm (most tests can't accurately go below this level) in foods which they have labelled gluten-free, especially a USA-based company (lawsuits in the USA are far more common and easier to win in such cases), they will immediately seek to find and eliminate the source of the gluten contamination. There is a very common myth or misconception that companies don't care at all if their products test between 5-19ppm, but they definitely do because a product recall could be just around the corner should they hit the 20ppm or higher level. Many people, including myself, now have home test kits like Nima, and companies are definitely aware of this.  
×
×
  • Create New...