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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Discuss SNP rs1464510 Celiac, gliadin, gluten related SNP

Discussion in 'Genetic Testing and SNPs' started by roxie60, Feb 13, 2013.

  1. Sea

    Sea Senior Member

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    What was the lab reference range for IgA? I have read that the IgA antibody test is fine unless your IgA is less than 50% of the lowest number in the reference range. IgG antibody testing is an option too. Even if all tests come back normal though it is really only the biopsy that can give you a definite answer (and even then only if they know what they're doing and take enough samples. It can still be missed with only 1 or 2 samples).

    The Enterolab test is not recognised by a lot of doctors, I don't know whether it is accurate or not.
     
    MogMog likes this.
  2. MogMog

    MogMog

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    Thank you all.
    That's a really interesting link nandixon, thank you. So, I should be able to get the same information from 23and me as from the Kimball gene test?
    Sea, I haven't heard that before about the 50% thing. My IgA was 0.52 g/l and the lab ref range was 0.9 - 4.5. So that would mean I'd just scrape into the alright category; don't know if that could be trusted or not.
    I was just about to research how accurate the biopsy was - so not necessarily completely accurate and the definitive answer?
    Enterolab say you don't have to be eating gluten for the faecal fat test, yet you have to be eating gluten for the biopsy - what's the difference? Are they not both measuring the damage to the villi?

    I wonder if I would be better just doing 23andme and (hopefully) working out the info from that.
     
  3. Sea

    Sea Senior Member

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    A positive biopsy is definitive but a negative one not necessarily. Damage can be patchy and therefore missed with a biopsy. The damage has to be quite severe before it's obvious to the doctor doing the scan. It's usually seen under the microscope at the pathology lab, so unless they get a piece from a damaged area it can be missed. You have to be eating gluten because the damage can repair itself relatively quickly in some cases once you stop eating gluten.

    I don't know enough about the Enterolab test to know what they're looking for. If it's a faecal fat test then they're just looking at malabsorption which can be from Celiac or have other causes.

    23andme don't have complete genetic testing, but you can deduce from it whether you carry the most common Celiac predisposition types.
    http://www.snpedia.com/index.php/Celiac_disease

    The other thing to be aware of with low IgA is that it is far more prevalent in Celiac disease (and other autoimmune illness) than in the general population so it's a clue that you should definitely persue Celiac testing.
     
  4. xchocoholic

    xchocoholic Senior Member

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    Hi. Sorry to butt in, but the people at celiac dot com other gluten free sites probably know the answers to these questions.

    I would expect that any of the speakers that attended the gluten summit would know this. They've been on top of this for many years now.

    I never had the time to focus on this aspect because my me/cfs symptom / diagnosis list is long.

    Tc ... x
     
  5. MogMog

    MogMog

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    Thank you very much for all the info Sea. I had heard about low IgA being common in Coeliac but had forgotten it. Mmm, I thought the biopsy was reliable, didn't know it could also produce a doubtful result.

    Thanks xchocoholic. I think I tried to read Dr Tom Bryan (Gluten summit) about the tests but I don't think I could find the info on his website, think I had to subscribe. Correct me if that's wrong. I know what you mean about focusing on different symptoms; I decided to go after gut / coeliac but my GP messed it up for me by doing the wrong test and then misinforming me for months, so I've been on gluten longer than I should have been. I want to stop it but don't know whether to continue in the hope of getting a biopsy, but that could be months down the line.

    I know the elimination diet is recommended but that won't tell you if it's coeliac or gluten intolerance. Also, I feel it would be too difficult. Not the diet itself, but knowing what's going on - was it the food, external stress, menstruation flare-up, the weather, a bug you've caught, that caused symptoms? And there's other stuff I should be doing, herbal abx, and I can only do one thing at a time.
     
  6. xchocoholic

    xchocoholic Senior Member

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    Hi @MogMog

    Going gf without testing for celiac disease first is up to you. There are pros and cons either way. Imho the biggest pro to having a positive biopsy report is having celiac on your medical records.
    It makes hospital visits easier.

    If you decide to get a biopsy, because on the prevalence of missed dx based on biopsies I'd try going gf even if the biopsy is negative. Most celiacs I know had multiple negative biopsies over a period of years.

    You probably already know that an endoscopy won't show gluten intolerance without celiac disease. Those at the gluten summit would know this. For free info try dr rodney ford or any dr listed on theglutenfile.

    If you have a reaction to any food or chemical you eliminate adding it back into your diet will tell you if your conclusion was accurate. I did this multiple times for all the foods I'm intolerant of.

    I just meant I never took the time to learn exactly what the tests meant. I was already gf by the time I learned about the testing. Eating gluten again wasn't something I wanted to try again because of how much better I felt.

    Tc .. x
     
    Last edited: Jun 24, 2014
  7. MogMog

    MogMog

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    Thanks very much again xchocoholic.

    Do you think 6 weeks of gluten eating would be enough before a biopsy? I think that's the minimum recommended for doing the coeliac blood tests.

    So, if biopsy isn't always accurate, will the gene tests give a definite answer??

    Yes, I will probably steer clear of gluten once I get the testing done. I was off it before, but when I restarted, I didn't get a dramatic reaction to it, it was much more gradual, a gradual deterioration over weeks. I would like to get some definitive answers if possible (I know, I know, it's not that easy). If I knew I had celiac, then I would obviously be very strict about avoiding gluten. Otherwise I might not have to be so strict and could maybe be gluten-lite, occasionally lapsing for easiness.
     
  8. Sea

    Sea Senior Member

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    Sadly, no. The gene tests only tell you if you are predisposed to Celiac disease. Around 40% of the general population carry genes that make you susceptible to Celiac but only around 1% ever develop Celiac disease.

    Also, to compound matters further, recent research has shown that there are even rare cases of Celiac in those who do not carry the genetic profile that is considered necessary to develop it.

    So, gene testing can be helpful but not definitive. Unfortunately some doctors misunderstand the genetic tests and will tell you that you cannot possibly have Celiac if you do not have one of the most common genetic profiles for it.

    Roughly 95% of Celiacs carry one or two copies of the haplotype DQ2.5 or DQ8. Some genetic testing only tests for these.

    Around 4% carry DQ2.2 and the remaining 1% a mixture of other types. If you get genetic testing make sure they are not only ruling out DQ2.5 and DQ8.
     
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  9. MogMog

    MogMog

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    Thanks very much Sea for the info about the gene testing.

    The gene test I am considering tests for:
    "HLA-DQA/DQB genotyping provides detection of DQ2 (DQA1*0501, DQA1*0505, and DQB1*0201/*0202) and DQ8 (DQB1*0302) Report includes DQ2, DQ8,half DQ2,homozygosity for DQB1*02, and complete DQA and DQB genotypes"

    Is that good enough to cover all the genes that should be tested?
     

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