Jump to content

  • 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):

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

  • 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. knitty kitty
      - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

      @glucel, There's a strong correlation between thiamine deficiency, hypoxia, and insomnia. Thiamine is needed to help red blood cells carry oxygen. In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks. Not a big thing, particularly because most likely it is "true" but not yet demonstrated.
    3. glucel
      - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks for the thoughtful comment. You are right that the study’s main conclusion was cautious: the researchers found that inherited antibody-gene variants significantly shape the naïve B-cell receptor repertoire, including usage of some gene segments involved in celiac-related antibody responses, but they did not find strong evidence that polymorphisms in...
    5. knitty kitty
      - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      I have osteoporosis and have crushed three vertebrae. I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health). I tried Fosomax, but it tore up my insides. I prefer the supplements. I feel better and my bones feel stronger. References...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442
    michelinagiggles
    Newest Member
    michelinagiggles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      iron digestibility

      By knitty kitty · Posted

      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      iron digestibility

      By glucel · Posted

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      By knitty kitty · Posted

      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      Coeliac And Cardio Vascular Disease

      By knitty kitty · Posted

      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...