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Confusing symptoms

Sabrine
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Go to solution Solved by Scott Adams,

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Sabrine Rookie
Sabrine
Posted

I’ve only just had a diagnosis of coeliac from a blood test and I am awaiting a referral for a biopsy presumably to ascertain the level of damage to my intestine. I don’t seem to have the usual symptoms which I have read about on this site. I’ve never had diarrhoea, but I’ve had constipation on and off for the last three years. Unfortunately, as I’ve had MS for 25 years and a faulty hip replacement, I take a low level painkillers and osteoporosis medication both of which can cause constipation so it never occurred to me I had coeliac. Especially as I don’t seem to have any of the other symptoms that people describe here although I do have dry eyes and I was amazed to read that that can be a symptom of coeliac. I’m seeing a doctor on Monday and I will ask for a copy of my blood test results.  Could somebody tell me what questions I should ask the doctor about my blood test results and what I should look for in the biopsy result as a lot of it is very confusing. Apparently my blood test was 8.9.  Is that an antibody score?  I know they call it a weak positive but only just. Hoping that that score is reasonably good news or is it meaningless without the biopsy?

 

 

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Scott Adams Grand Master
Scott Adams
Posted

Can you also provide the reference range that should be with your test result?

We've done some research summaries on MS and celiac disease that you may find interesting:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/multiple-sclerosis-and-celiac-disease/

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.

 

 

Sabrine Rookie
Sabrine
Posted
  • Author

Our wonderful NHS has become rather slow of late so I am still waiting to find out more about my test results. I have recently had more blood tests taken which seem to be for vitamin deficiencies and I have my endoscopy next Wednesday. I will definitely ask what scale is used and then I will post my results. I am very grateful for the advice I have been given on this site. 

Scott Adams Grand Master
Scott Adams
Posted

I hope you have been eating gluten daily, lots of it, for your endoscopy. Some people mistakenly go gluten-free before all testing for celiac disease is completed, and doing that can cause false-negative results.

Sabrine Rookie
Sabrine
Posted
  • Author

I have been making sure my gluten intake is as high as possible eating loads of bread and pasta. The strange thing is, it’s not making me feel ill at all.  It never has. And yet I definitely tested positive positive for coeliac on my antibody test. Very strange.

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

Many people with celiac disease are asymptomatic, but unfortunately if they keep eating gluten they still run the same health risks as those who have symptoms.

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  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Test interpretations

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also h...
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      - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Test interpretations

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten...
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      Test interpretations

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol.
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  • Posts

    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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