Coeliac Disease Home Testing

coeliac

18 months ago, I bought a home blood test for Ceoliac Disease. The test result (positive) is pictured above.

I bought this test two months after my first miscarriage (when trying for baby no.3). I was suffering (and occasionally still do) from digestive complaints – wind, massive bloating, cramps and (TMI) even two occasions of leaking a bit of poo (how horrible!!!!! I can’t even believe I’ve written that down!!!!!).

Anyway, seeing the positive result, I went straight to the doctor and they ordered me a blood test.

Which came back negative.

I was stunned. Not only do I have many of the symptoms, but coeliac disease tends to run in families. My mother has suffered from IBS for years (she has never been tested, but coeliac is often mistaken for IBS) along with a whole host of other immune issues. And her mother suffered osteoporosis (which can be a result of coeliac disease).

Not only that, but coeliac disease is often linked to recurrent miscarriages. My count stands at seven (at no point has anyone suggested coeliac disease might be worth investigating, nor did the doctor I saw think it was relevant).

In fact, my doctor didn’t even want to see me – the receptionist gave me the results and said there was no need to come in and see her.

I guess my digestive problems weren’t considered serious enough to warrant any further action.

What did I do?

I cut right down (but not completely out) on gluten products. We switched pasta out of our meals (we used to eat a lot of it) and included more rice and potatoes. I cut down on bread.

I felt better.

And that’s how things have been for 18 months.

Eating vegan has prompted an increase in gluten and my skin and eczema are now really bad (could be the dark chocolate). I’m full of wind (could be the extra beans) I’m bloated as hell (could be my big ovarian cyst). I just feel so crappy all the time (no, that’s not a medical term, sadly).

But now I’m wondering again.

Why was the home test positive and the doctors test negative?

Is the home test just rubbish?

I’ve read as many reviews as I can on the home tests – many people have got a positive home test and gone on to get a positive test at the doctors.

What is happening in my case?

Why the discrepancy?

I decided to do some research.

The coeliac test I originally used is this one. It tests for:

  • IgA antibodies to tTG (ATA IgA)
  • IgG antibodies to tTG (ATA IgG)

ATA IgA is almost certainly an indicator of coeliac disease. However, coeliacs can be deficient in IgA and produce excessive IgG. The problem is, IgG is not as definitively linked to an immune response to gluten (as far as I understand).

So I was testing for two variables in one test. And I don’t know which was positive.

Maybe my blood test at the doctor only checked IgA?

The doctor is closed for the weekend, so I went out and bought a test for IgA only, so see what the result would be:

coeliac2

Negative!!

So I have no IgA antibodies to tTG.

Logic therefore dictates that I tested positive to IgG antibodies in the first test. This may also explain why the doctors test was negative (to be confirmed).

Next step:

Why would I have raised IgG?

Two possibilities:

  • I am a coeliac with IgA deficiency
  • I am a coeliac with normal IgA levels (some people have a positive biopsy despite a normal blood test)
  • I am not a coeliac. My body is producing an immune response to some other condition or issue (I have long suspected an immune issue, as I mentioned in the antihistamine protocol)

IgA Deficiency

From Medscape: Immunoglobulin A deficiency (IgAD) is defined as an undetectable serum IgA level. In the past, this was usually confirmed with the low-level radial immunodiffusion method (lower limit of detection is 50 mg/mL [5 mg/dL]). However, this test is rarely done in current practice, and results are usually reported as < 0.07 g/L or < 0.05 g/L.

And from coeliac.org.uk: When the laboratory is measuring your antibody level they should also check your total serum IgA to detect IgA deficiency. If you are IgA deficient your GP will need to test you differently for the condition.

So I need access to my blood test results from 18 months ago. That will have to wait until next week.

If I cannot obtain any further confirmation via my doctors, I will try an elimination diet and subsequent gluten challenge.

17 thoughts on “Coeliac Disease Home Testing

  1. Wow, SO much of what you said (your mom’s IBS, her mom’s osteoporosis, your own issues) – sounds just like my situation! O_O
    Hmm, maybe the vegan diet is too restrictive because you were already so limited? It’s bizarre to me to see a home test of anything but pregnancy!! And LOL, that first pic looks a bit graphic because of the red! 😛
    I hope you can get some answers soon. XO
    P.S. I’m throwing a party today if you need some fun! 😉

    • Haha! Yes, sorry about the gore in that first pic ;-). I WILL find a diet that works for me – and I will post about everything I find in the meantime, just in case it helps anyone else! Heading over to find some new reading at the party!

  2. Ok. I’ve been tested for coeliac several times (as part of a thyroid, adrenal and cortisol test). I have always come up negative. However, I too, notice that I just feel better when I stay away from gluten and all other polysaccirides. For my husbands health we went on the GAPS diet for a few months. The result was that his immune overreaction (itchiness without apparent cause and his body attacking his thyroid) completely stopped! For me, who didn’t even think I had a problem, I just felt better. Less fatigue, no 3 o’clock slump, no gas, no bloating, and no BRAIN FOG.
    We’ve ended up on a primal diet after alot of trial runs on different foods. Since I knew the bread and other grains were making us feel yucky, we have been off of them for nearly a year despite the expense.
    The whole digestive thing sounds like a difficulty digesting phytates and goitrogens. Also, in the spirit of TMI, I had a constant yeast infection while eating grains. I think that may be the biggest reason I keep to it.
    Most coeliac tests cannot register positive unless the colon walls are too perforated to protect you at all. So, your symptoms are likely the early stages.

    • Lots of info here – thank you! I hadn’t thought about things having to get so bad to test positive. I’m almost certainly going to try an elimination for a month. I too get the odd yeast infection – again just another thing I put down to generally feeling crappy most of the time. I haven’t heard of GAPS so will look it up. Aaah – I just feel like I’m missing a piece of the puzzle to feel genuinely healthy and I can’t find it! As much as doctors dismiss these things I don’t think it is normal to suffer from constantly niggling health complaints like spots, eczema, yeast infections, bloating, etc. you know? I think we should essentially be healthy and diet is the key to that. I just have to find the right combination.

  3. Ever since my deyox earlier this year I’ve cut gluten out of my diet. I think it can be as much a trigger as dairy for eczema. I still have some here and there (usually if I’m out and stuck or cheating) but am going to do my best to eliminate that too. Someone was telling me that if you are even slightly sensitive to the stuff that the smallest amount can invoke an immune response. Ive also stumbled over the book Grain Brain twice in the last week and it sounds really fascinating. Check it out if you get a chance. Good luck in working out what’s happening for you.

    • Ooo will take a look (i have a massive amazon wish list, ha ha!). I’m going to do a gluten free month next month – in fact maybe i should read it now to motivate me through the month. I can’t imagine living without dairy or gluten… But to be honest I would if i knew that it would make me (and my skin) feel amazing. Your discipline in eating well is astounding. You are an inspiration whenever I feel like chucking it in and grabbing a creme brulee!! XXX

      • Haha I have phases (like now) where I cheat often so I’m not that great at it. It is worth it though. I do feel so much better without it AND eczema free skin is as amazing as you’d imagine it to be. I honestly don’t find gluten or dairy free that hard in my day to day life but when you go away or need a quick take away food option it becomes difficult to stick to and that’s how I get caught slipping off the wagon more and more frequently! We are on hols now for Easter and I’m trying to make good choices but will get serious about it again when we return next week.

        • I’ve just bought grain brain for my kindle after reading the intro on amazon. I am both terrified and excited to read it, ha ha! Thanks for the recommendation. I LOVE books like this. I’ve pretty much decided that I’m going to eat what the hell I want on 1st May and then for the following 30 days of the month I’m going gluten free. Nothing like personal experimentation 😉 If I can manage vegan over Easter weekend (and believe me, it’s been a true test of my willpower to supervise the boys’ chocolate consumption, and wipe their sticky hands and faces without eating any!), then I can manage gluten. I tried going gluten free a long time back and I think I managed about 3 days, hah! Anyway, I’m rambling. Hope you’re having a wonderful Easter break! XXX

          • Ooooo yay! Let me know how it goes! I’m going to get it soon too but have bookclub books that I have to fit in too. You can do it! There are lots of gluten free grains you can use to make a variety of stuff these days. The options are plenty! Make sure you blog about it and let us know how you go!

  4. Interesting. Are you a closet scientist? Your thorough research astounds me. And I admit I even got a little lost reading this post. 🙂 Anyway, I have thought several times of trying to go gluten free. I tested negative for celiac and ended up with an IBS diagnosis about 3 years ago now after they basically eliminated everything else that could be causing my intestinal..ahem..distress. But I’ve still wondered if a gluten free diet would help. But honestly, gluten free is just so hard and I guess I’m just lazy. I do think about it, though. Good luck getting some improvement with your issues, though. GI stuff does suck.

    • I’d love to be a scientist – alas I’m just an ex-programmer with too much thinking time on her hands 🙂 It is amazing how many people have digestive problems – whenever I mention them others say “me too!” It really makes me wonder if gluten on the whole was a major mistake by human civilisation! I’ve decided to do a gluten free month (after my vegan month). It’s tough – I managed 3 days last year before I cracked. However I have more willpower these days. Will keep you updated with how it goes. I have to say cutting down (rather than cutting out) gluten wasn’t too hard and it DID make me feel better, so maybe you could try that. We used to be huge pasta monsters, but eat more rice and potatoes these days. Gluten really is everywhere though.

  5. RE on the homeschooling doctor, she has tons of info about GAPS and healthy eating but her blog is on private mode right now. 🙁
    I hope all is well Rose, I don’t know a lot about healthy eating and disorders, and it is scary to me to find out about disorders and such, and the photo with the blood!
    Terri sent me a message with tons of info about my health issues and I dis not even read them yet. I am skeered and totally in denial. Ugh. I think I should go ahead and read them too, i admire the way you can face things like this head on and very proactive about it. And I’m blabbing now. Sorry.
    Wishing you all the best Rose!

    • Er, sorry about the blood!! I’m going to look at the homeschooling doctor blog, thank you. Read all about it – face up and make changes – it is worth it and you can do it!!!! X

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