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Testing Question

AliB

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AliB Enthusiast
AliB
Posted

My blood test came back negative.

Over here in the UK its like getting blood out of a stone. I even rang the Lab to ask if they could interpret for me as my doctor said he didn't know enough about it, but they said they couldn't help as it is illegal! Can you believe that?

Anyway, I did manage at least to get the doc's receptionist to give me what did come back - the following

tTG 1uml range 0 - 10

IgA 1.54 range .85 - 4.68

Doesn't seem like nearly enough testing or information to me. Any other opinions?

Other than putting me forward for gastroscopy which wouldn't show now as I am gluten-free with no intention of going back to it, I'm pretty stuffed really.

Shame I don't live in the States, I'd probably be better off getting a stool test done with Enterolab.

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nikki-uk Enthusiast
nikki-uk
Posted
tTG 1uml range 0 - 10

IgA 1.54 range .85 - 4.68

Doesn't seem like nearly enough testing or information to me. Any other opinions?

Looks like your tTg was NEG (usually anything over 10 is POS)

Also your total IgA count looks normal (Low IgA negates the tTg test)

There were a few other bloods your GP could have done (Haemoglobin, EMA etc) but the tTG is generally thought to be the most important.

Were you eating gluten when you had the bloods?...although NEG bloods doesn't mean you DON'T have celiac disease

As you say - if you are already gluten-free there's not much point in having any biopsies - do you feel any better for going gluten-free??? :)

Ursa Major Collaborator
Ursa Major
Posted

You absolutely CAN do the enterolab tests, if you can afford to pay for overnight courier to ship the samples back to them. They will send their kit all over the world, and give you the results by e-mail.

AliB Enthusiast
AliB
Posted
  • Author

I was eating gluten and dairy until I had the blood taken then started immediately after. I noticed that sometimes if the IgA reading are low it can be because the antibody levels are low for some reason so then a test has to be done to measure those.

Having read the info, it seems that the Enterolab stool tests may be far more accurate. As it said, there are far more likely to be antibodies in the stool than in the blood.

Unfortunately we don't have health insurance here to pay for it, we have the good old NHS and are at the mercy of it so we don't have the choice (despite the fact that we actually pay for it via taxes!), and I just don't happen to have a spare $400 dollars floating around.........

How many had positive results from the Enterolab tests after getting negs on blood and/or biopsy? Was your insurance happy to pay? Did your doctor accept the test as positive enough for a diagnosis? A stool test has got to be cheaper than a biopsy at the end of the day and the NHS likes the word 'cheap'!

AliB Enthusiast
AliB
Posted
  • Author

Sorry Nikki, I forgot to answer your other question - yes I do feel a lot better.

I started on Monday 28th Jan as I couldn't cope with the pain and relentless diarrhoea any more.

Within 6 hours the terrible pain in my stomach had gone and the diarrhoea had stopped.

Within 5 days I was beginning to gain more energy.

Within a week the bloating had stopped and my stomach had calmed right down and is coping well apart from the odd reaction (gippy stomach and horrible backache) when I eat something it doesn't like (I'm still trying to pinpoint the culprits!)

Within 2 weeks I was able to digest meat again. I have also been sleeping much sounder and am far less restless. It looks like, for the first time in my life, I might actually find sleep to be refreshing - I am so looking forward to bouncing out of bed in the morning rather than dragging myself out feeling hungover (I wouldn't mind, but I can't even drink alcohol as it makes me cough!)

The restless legs have stopped, although still a little stiff the pain in my shoulder has gone, the pain in my coccyx is much improved. The big black rings under my eyes that have been a permanent fixture for the last 35 years are finally starting to fade (don't think I'll be quite so successful with the bags though!)

Although I had a background headache for the last week that has been a lot better today. I am very tired, but I have missed a lot of sleep over the last few months and undoubtedly, along with the withdrawal and detox effects, my body has a lot of catching up to do.

I am not that worried about a diagnosis, but being able to get some products on the NHS would be handy as they aren't particularly cheap (we do get free Scripts here in Wales!).

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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