Celiac blood test diagnose help

[Sarah Rose]

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 

[trents]

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]

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 October 18, 2023 by Wheatwacked

[Blue-Sky]

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]

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]

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]

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

[knitty kitty]

@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]

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

[Sobiha]

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]

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 October 19, 2023 by trents

[Sobiha]

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