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This topic contains 39 replies, has 5 voices, and was last updated by  Linda L 1 year, 3 months ago.

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  • #459921
    lynnie_sydney
    Participant

    Hi Linda
    Yes blood tests do require you to be consuming gluten in order to be able to measure antibodies. So I’m not sure why that was done in your case after you had been on the strict diet for a while.

    If you want to pursue this, you can also undergo gene testing. See extract below

    Gene Testing (HLA genes)

    Gene (HLA) testing is a useful test in select cases when the diagnosis of coeliac disease is unclear. This can occur if the blood or small bowel biopsy results are difficult to interpret, or if adequate gluten was not being consumed to make the test reliable. It is performed on a blood test or cheek (buccal) scraping and can be ordered through your local doctor.

    Over 99% of people affected by coeliac disease have the HLA DQ2, HLA DQ8, or parts of these genes. Therefore, a negative test for these genes effectively rules out coeliac disease. The gene test on its own cannot diagnose coeliac disease – only 1 in 30 people who have HLA DQ2 or HLA DQ8 will develop coeliac disease. A gluten free diet should only be started after confirmation of coeliac disease by small bowel biopsy.

    As the gene test is not dependent on gluten intake, it can be used when people have already commenced a gluten free diet. If the gene test is positive, then a gluten challenge followed by small bowel biopsy will be required to test for coeliac disease.

    coeliac.org.au

    (note: in Australia, the spelling is the same as British spelling which is “coeliac” taken from its Greek origin)

    I had the gene testing quite a long time after I had eliminated gluten and it showed that I do have these genes. I didn’t proceed to small bowel biopsy because, whatever the result, I would not have re-commenced consuming gluten as I had felt so much better without it.I think my symptoms were probably quite mild. However, these days, if I ever consume gluten inadvertently, my stomach bloats within an hour and I do experience joint pains for a couple of days. Many AP and Lyme docs these days recommend a gluten-free diet anyway – without testing for coeliac – as part of treating Leaky Gut syndrome which is thought to be very widespread among those with chronic disease.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #459968
    Linda L
    Participant

    I haven’t replied sooner because I had HLA test some years ago /Dr D?/ and I’d like to find the results. I will write about it.
    Thank you Lynnie.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #459986
    Linda L
    Participant

    Three years ago I had HLA test
    HLA B27 negative
    HLA-DR 4.7 DRB1 04.07
    HLA-DQ 7.9
    HLA-DQA1 02.03
    HLA-DQB1 030L0303
    Frankly speaking I don’t understand all that. It is very difficult.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #459989
    Maz
    Keymaster

    Linda, this link might help a bit to get you started on researching – if you scroll down, you’ll find various HLA sub-types:

    HLA DR4

    Worth bearing in mind that genetics only point to predisposition for certain diseases, but it doesn’t mean a person will develop them.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #459992
    lynnie_sydney
    Participant

    Linda there are lots of variables there. Do you remember what was being looked for? And how did the practitioner go over those results with you?
    I really think that practitioner is the best placed to explain what they were looking for and what their opinion is of these results.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #460028
    Linda L
    Participant

    Thank you Maz and Lynnie. Unfortunately I don’t remember what the practitioner said that time. I knew nothing about it so probably i didn’t pay much attention to the subject. Maybe it’s a good idea to record them.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #460036
    lynnie_sydney
    Participant

    Linda – you could show the doc you are seeing now and ask for an interpretation of them

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #460039
    Linda L
    Participant

    OK I will.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #460174
    Lily
    Participant

    I don’t know if I’m allowed to post, I’m a new member, but I’ve been taking an antimalarial drug called Alinia for a few years now. It has worked wonders for my ability to breathe. I was diagnosed with ALS that turned out to be lyme. I also take armour thyroid for Graves Disease.

    #460190
    Linda L
    Participant

    Lily,
    It would be helpful to all of us if you add your signature. Thank you. Did you have malaria?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

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