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

Celiac blood test diagnose help


Sarah Rose

Recommended Posts

Sarah Rose Newbie

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

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
(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

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

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

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

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

@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

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

Sobiha Apprentice
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
(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
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
  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    PattyPagnanelli
    Newest Member
    PattyPagnanelli
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Matthias
      Thanks a lot for your response! Can you maybe specify which kind of cheeses I should be cautious about? Camembert/Brie and blue cheeses (the molds of which are nowadays mostly grown on gluten-free media, though, so I've read, right?) or other ones as well? Also, I was under the impression that yeast is generally gluten-free if not declared otherwise. Is that false?
    • Scott Adams
      I agree with @trents, but thank you for bringing this up here!
    • Jane02
      Hi @trents, yes I've had my levels checked in Dec 2025 which revealed vit D deficiency. I considered eggs although they only contain about 45 IU vitamin D/egg. I need 2000 IU vitamin D for maintenance as per my doctor. Although now, I likely need way more than that to treat the deficiency. My doctor has yet to advise me on dosing for deficiency. I've also considered cod liver oil, although again, if it's processed in a facility that has gluten, especially on flour form, I worried to test it, even if they have protocols in place to mitigate cross-contamination with gluten.
    • trents
      Welcome to celiac.com, @Jane02! Have you had your serum D levels checked for deficiency/sufficiency? What about cod liver oil? Egg yolks can also be a good source of vitamin D.
    • Jane02
      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to intake enough vitamin D as I can't have dairy and have insufficient sun exposure in the northern hemisphere. I've tried B Complex from Country Life (certified gluten-free) - horrible reaction. I've tried Metagenics vitamin D tab (certified glute-free) - bad reaction. I've tried liquid vitamin D Thorne and D Drops - reactions were mild since I tried a drop of a drop. I understand there could be other things I'm reacting to in my diet, although my diet/intake is pretty consistent with minimal variables so I do think it's something in these supplements. I understand I could be reacting to the active ingredient vitamin/mineral itself or even the filler ingredients. I tried the vitamin D drops since the only filler ingredient is coconut oil, in some brands, which I know I can tolerate really well on its own - I cook with coconut oil frequently and have no 'glutening' reactions at all. Perhaps I'm reacting to the vitamin D itself, although I eat fatty fish every few days, an entire fillet with no 'glutening' reactions, which contains anywhere between 400-600 IU per fillet so I shouldn't be sensitive to vitamin D. All this to say, I'm desperately looking for at least a safe vitamin D supplement. Does anyone know of a safe vitamin D supplement brand? I'd love to know if there are any supplement brands that have absolutely no gluten (especially in flour form) in their facilities. I've heard of Kirkman having no grains in their facility - I may try this brand. Has anyone reacted to this brand?   
×
×
  • 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.