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

Still ongoing....


TheSootyShow

Recommended Posts

TheSootyShow Apprentice

Some of you might remember I started having tests two months ago, was told I had celiac and then the GP changed their mind and said she read the wrong test results. 

 

At my next appointment I pushed for more tests because I was feeling rubbish all the time still. 

Within the last week I have had a HLA at the hospital which the gastro team recommend. Awaiting the results for that, I'm not sure what this test even does?

In the last 2 months I have had 5 colds. My immune system has been kinda shitty and it's made me feel really low. I've been so tired all the time, my eyes physically burn by the end of the day and throughout the day where I feel exhausted even with "normal" amounts of sleep. If this latest blood test comes back fine, then I don't know what other things I should push for, because I know my body and it's not working how it should. Even if it's not gluten sensitivity or Celiac, then I don't even know where to go next with getting support and feeling better. 

 

Thanks 

 


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



Celiac.com Sponsor (A8-M):



Wheatwacked Veteran

If you could post your tests someone on the forum can give you a second opinion evaluation of their interpretation of them.  Test, result, range.

12 hours ago, TheSootyShow said:

My immune system has been kinda shitty and it's made me feel really low.

Your colds would be a strong indication of vitamin D deficiency and zinc deficiency. Even the NHS says: "Government advice is that everyone should consider taking a daily vitamin D supplement during the autumn and winter."  I've been taking 250 mcg a day (10,000 IU) since 2015 to keep my blood 25 hydroxy D level at 200 nmol/L (80 ng/ml).

As soon as you feel a cold coming on, zinc glyconate lozenge coats the mucous membranes. Zinc is the body's antiviral protection.  My last cold was May 2004.  "Zinc deficiency has been shown to increase the release of proinflammatory cytokines, such as interleukins IL-1β, IL-6, and tumor necrosis factor (TNF)-α .Zinc also has direct anti-viral properties. Zinc has been recognized as therapeutic against other upper respiratory pathogens, such as the common cold. It has been shown that increased intracellular zinc concentrations results in decreased SARS-COV-2 replication " Zinc Supplementation Associated With a Decrease

A good vitamin B complex, along with Choline supplements may help digestion and energy.

Celiac Disease causes malnutrition if not treated.  So do other food avoidance schemes.  While waiting to complete testing you should continue to eat a least 4 slices of bread.  Unfortunately, the sicker you are the greater chance of testing positive.  In the meantime it's never too early, or late, to start rectifying your multiple vitamin and mineral deficiencies, whatever the cause.

Scott Adams Grand Master

Did you have an HLA blood test for genetic markers for celiac disease? This would only tell you if you are in the ~40% of people who have the genes that may include you in the pool of people who could develop celiac disease. 

TheSootyShow Apprentice
2 hours ago, Scott Adams said:

Did you have an HLA blood test for genetic markers for celiac disease? This would only tell you if you are in the ~40% of people who have the genes that may include you in the pool of people who could develop celiac disease. 

I think that's the test I'm waiting upon to get back! 

Scott Adams Grand Master

If you are having symptoms and suspect celiac disease, a more relevant test would be a celiac disease blood panel.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

TheSootyShow Apprentice
1 minute ago, Scott Adams said:

If you are having symptoms and suspect celiac disease, a more relevant test would be a celiac disease blood panel.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

Thank you. I will have a look at that. I have had an Iga test and my results were as follows:

 

IGA

Immunoglobulin A level 3.06 g/L [0.8 - 2.8]; Above high reference limit.

So I dont have a deficiency! Do you know what it means to be over the reference limit? 

Scott Adams Grand Master

An elevated IgA level can have various potential causes, and it is essential to consider the individual's medical history, symptoms, and overall health. Some possible reasons for high IgA levels include:

Infections: Chronic infections, particularly those affecting the respiratory or gastrointestinal tract, can lead to increased IgA production.

Autoimmune Disorders: Certain autoimmune diseases, such as rheumatoid arthritis or systemic lupus erythematosus, may be associated with elevated IgA levels.

Liver Disease: Liver conditions, including cirrhosis or hepatitis, can affect immunoglobulin levels.

Inflammatory Bowel Disease (IBD): Conditions like Crohn's disease or ulcerative colitis may result in elevated IgA levels.

Kidney Disease: Some forms of kidney disease can lead to changes in immunoglobulin levels.

Genetic Disorders: Certain genetic conditions can affect the production of immunoglobulins.


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



Celiac.com Sponsor (A8-M):



TheSootyShow Apprentice
On 11/27/2023 at 4:48 PM, Wheatwacked said:

If you could post your tests someone on the forum can give you a second opinion evaluation of their interpretation of them.  Test, result, range.

Your colds would be a strong indication of vitamin D deficiency and zinc deficiency. Even the NHS says: "Government advice is that everyone should consider taking a daily vitamin D supplement during the autumn and winter."  I've been taking 250 mcg a day (10,000 IU) since 2015 to keep my blood 25 hydroxy D level at 200 nmol/L (80 ng/ml).

As soon as you feel a cold coming on, zinc glyconate lozenge coats the mucous membranes. Zinc is the body's antiviral protection.  My last cold was May 2004.  "Zinc deficiency has been shown to increase the release of proinflammatory cytokines, such as interleukins IL-1β, IL-6, and tumor necrosis factor (TNF)-α .Zinc also has direct anti-viral properties. Zinc has been recognized as therapeutic against other upper respiratory pathogens, such as the common cold. It has been shown that increased intracellular zinc concentrations results in decreased SARS-COV-2 replication " Zinc Supplementation Associated With a Decrease

A good vitamin B complex, along with Choline supplements may help digestion and energy.

Celiac Disease causes malnutrition if not treated.  So do other food avoidance schemes.  While waiting to complete testing you should continue to eat a least 4 slices of bread.  Unfortunately, the sicker you are the greater chance of testing positive.  In the meantime it's never too early, or late, to start rectifying your multiple vitamin and mineral deficiencies, whatever the cause.

For reference - the iga test and Serum alanine aminotransferase level are both high. Ttg iga was with in range. 

 

 

IGA

Immunoglobulin A level 3.06 g/L [0.8 - 2.8]; Above high reference limit

 

IGA ANTI-TISSUE TRANSGLUTAMINASE AN 0.66 U/mL [< 3.0]

Liver function tests

Serum albumin level 39 g/L [35.0 - 52.0]; New Albumin assay method and reference ranges

implemented 08/08/23

Serum alkaline phosphatase level 69 U/L [30.0 - 100.0]

Serum alanine aminotransferase level 139 U/L [0.0 - 35.0]; Above high reference limit

Serum total bilirubin level 8 umol/L [0.0 - 17.0]

 

 

Renal profile

Serum sodium level 142 mmol/L [132.0 - 146.0]

Serum potassium level 4.1 mmol/L [3.5 - 5.0]

Serum urea level 3.8 mmol/L [2.5 - 6.7]

Serum creatinine level 51 umol/L [45.0 - 84.0]

eGFR using creatinine (CKD-EPI) per 1.73 square metres > 90 mL/min/1.73m*2; eGFR is not valid in acute renal failure,

 

 

 

Scott Adams Grand Master

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      7

      Question

    2. - fritz2 replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      7

      Question

    3. - Tuba1971 replied to Pat B's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      FDA says that most drugs are gluten-free???

    4. - PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      NCGS Diagnosis

    5. - Viroval replied to Nicbent35's topic in Related Issues & Disorders
      13

      3 year old gluten intolerance?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,752
    • Most Online (within 30 mins)
      7,748

    miikarochan
    Newest Member
    miikarochan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      endomys is, aka, "EMA" and is a celiac disease antibody test. It was negative. gliaiga is, aka, IGP-IGA, is also a celiac disease antibody test. It was negative. TRANSGLUA is, aka, TTG-IGA, another celiac disease antibody test. It was in normal range. tranigg is, aka, TTG-IGG, still another celiac disease antibody test. It was high, or above normal range. immaqnt is, I believe, what is also known as "total IGA" and at 160, looks to be in normal range since it wasn't flagged otherwise. This is a test for IGA deficiency. If someone is IGA deficient then all other IGA test scores cannot be trusted as being accurate. You are not IGA deficient. Here is a primer explaining the various tests that can be used to diagnose celiac disease: Celiac disease blood antibody testing is not valid when someone has been gluten free or eating low gluten for a significant period of time. The IGA tests are more specific for celiac disease than are the IGG tests but your slightly high TTG-IGG test score could reflect that you have celiac disease and have had low level exposure to gluten over time or a recent exposure. You could also have NCGS (Non Celiac Gluten Sensitivity).
    • fritz2
      I'm 70, had gut issues my whole life.  15 years ago my grandchild was diagnosed with celiac.  Since I had a constant either constipation or diarrhea and what the doctors thought was fibromyalgia and other issues I decided to see what happens if I quit gluten.  I got a lot better.  BTW, 30 years ago I had head & neck cancer, the radiation destroyed my thyroid.  I suffer from chronic fatigue and have to take synthroid. A few months ago, I bought a bottle of Ice water, I was thirsty and all they had at the motel was this.  It said sugar free and had a bunch of vitamins.  I couldn't read the fine print so I thought it's safe, so I bought several bottles (it had sucralose and maltodextrin in it).  I thought one per day would be ok and it absolutely was delicious.  In the meantime, my wife found some links and bratwurst for breakfast, we didn't know it had wheat in it and we picked up a half gallon of her favorite ice cream and unknown to us they had changed the formula and added wheat.  I had several meals and several bottles before I realized something was wrong.  Did all the sugar add to the issue?   In a day, I wasn't feeling well, my joints started swelling.  In a couple days, I thought sure I had gout in both hands.  In three days, I needed help to stand up or sit down, the pain was extreme.  I went to the emergency room.  They took blood and gave me cholchistine to alleviate the gout, it did nothing.  I didn't get a report on the test.  The next week the doctor ordered more blood tests and it's all acronyms but a couple items on celiac were listed as high.  The nurse I asked about the report had no clue and the RA was negative.  This has been ongoing for over a month and only now am I able to use my hands, but it's painful. Under the Celiac labs headline it says:  endomys-Negat gliaiga-  5 gliaigg-  1 TRANGLUA -3 tranigg-  8  (high) immaqnt-  160 Rheumatoid factor <12 Thyroid stimulating hormone: 2.81 Does anyone know what this means?
    • Tuba1971
      I had been glutened from somewhere since I pretty much make all my food from scratch. I had to have an endoscopy which should gluten damage, had blood work which also indicated high gluten. 4 years ago when I had these tests my gluten levels were all in good alignment. It comes down to my levothyroxin accord brand that must have gluten in it. I switched to synthroid 3 weeks ago and have been doing much better and am able to sleep at night again.
    • PA Painter
      That somes it up. It is worth mentioning GliadinX does not reduce symptoms for me at all. I also react to banana, avacado, cabbage, Oatmeal, and pecans among other things. If anyone else out there is like me, I had to eliminate gluten and all processed food before I could start to heal. I wish I had know this a long time ago. Thanks for the acknowledgement.
    • Viroval
      Thanks for sharing this detailed explanation. It’s really helpful to understand the differences between celiac disease and gluten sensitivity. I had no idea that gluten withdrawal could feel similar to addiction, and it’s great to have that context when considering how it affects people. It’s also good to know how important it is to continue eating gluten for accurate testing. I’ll keep all of this in mind!
×
×
  • Create New...