Hi, I have just had an Anti-tTG IgG test done for coeliac because I have partial IgA deficiency. This has come through at <1.0 and is marked as "low". The range is 0.1 - 10.0 U/ml.
Am I correct in thinking this means I have low IgG antibodies and that this is therefore a negative result for coeliac, i.e. I do NOT have the condition? (I have previously been tested with the IgA version of the test and it has always been negative).
I've worked REALLY hard to get this test from the dear old NHS and now I'm not sure what I'm looking at, so I would be really grateful if anyone could confirm this is a negative for me, as I have been all over the internet trying to get something definitive without success!
Many thanks!
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Chancery
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Hi Chancery I am afraid I cannot help you with the test results, however I would advise you to give CUK a call or send them an email. I have contacted them a few times about tests etc and they have always been very helpful and knowledgable. When I have phoned I have always been able to speak to a trained health professional and although I do have a membership with them they have never asked for the details so dont be worried they wont help or speak to you if you are not a member. Their number is 0845 305 2060
Hi tm! I'm ahead of you with your very good advice. I've dropped CUK a line, but I seem to have either confused them or accidentally missed the test results out! I've just rewritten to them with all the info so hopefully they'll be able to sort me out!
But yes, they are a very good resource, and always very helpful about it, with no questions asked - bless them.
Hello again, tm. They got back to me today and said that the blood tests would indicate I'm negative for coeliac, so I suppose that's a good thing. Doesn't feel good though, if I'm truthful - it just kind of leaves me stuck in the same place. As bizarre as it sounds, I wish I had some classic coeliac symptoms, like a runny tummy and weight loss, then I would feel more confident to pursue a biopsy. But all I have really is my neurological condition (Trigeminal neuralgia) and a suspicion that wheat has played a role in this developing. Not enough to convince a doc, I'm afraid....
Hi Chancery, my daughter has very similar symptoms to me , if anything they are worse than mine, she was diagnosed with ME as a teenager, has to have Vit B 12 injections every 3 weeks and also has rheumatic pains and fibromyalgia. We both get headaches and mild stomach issues so like you we don't have the typical ones and she has been tested for CD.
When I was diagnosed with CD I was sure she also had it, however when she had the blood tests and they came back negative we asked for the endoscopy and our GP didn't have any issues in referring her but the endoscopy was also negative, despite this she has given up gluten and her health has improved.
My own opinion is that the health professionals that work in our NHS tend not specialists in this area unless they have taken an interest themselves, the gastro doctor my daughter saw didn't recognise NCGS and simply told her it was IBS. This was despite us advising the the mild stomach issues were not our main worry.
I would ask your GP to refer you for an endoscopy anyway just to be on the safe side
Hope this is helpful and you manage to find some answers.
I confess I'm scared to have a biopsy - I think I'd rather pay out a small fortune for coeliac gene testing! Aside from that, I think my doc would flip out if I asked for a referral for one - I promised him if he got me the IgG test I wouldn't ask for a biopsy or anything further! I'm hoist by my own petard.
But you and your poor daughter, you really have been dealt a bad hand on the genetics front, haven't you? It does sound as if your daughter may have it but it just hasn't done enough damage to show yet, doesn't it?
I know that Alessio Fasano, the coeliac expert, says that coeliac won't show up on tests in its early stages, and Prof Marios H says the same about the neurological effects of coeliac, but try telling a GP that. They expect runny tummies and weight loss and if you don't have that it's all in your imagination.
Did you have the classic symptoms before diagnosis? I'm always very interested in how coeliacs have presented beforehand, and what their test results have been. There does seem to be a tremendous variation in symptoms.
Hi Chancery Sorry I have just had a chance to reply to you until now. I just wanted to advise you that it could be very easy to spend a lot of money on different tests to be no better off. I only discovered I had CD when I asked my GP to send me to a specialist for allergy type symptoms ( asthma was particularly bad during wet summers) and I had to either have steroid injections or prednisolone meds to feel normal and I just knew I had something wrong with me. Looking back I think my immune system was reacting to having CD but of course I didn’t realise at the time.
Anyway the doctor at the clinic had an interest in CD so every patient going to his clinic is tested for it, my symptoms were mainly headaches, falling asleep, itchy rash. Because I also have DH which was misdiagnosed by the GP's as dermatitis I know I must have had an issue with gluten for around 25 years, in that time I had gone to the different GP’s for various issues that I think are connected, nails crumbling, hair falling out, stomach feeling bloated, I thought at one time I had one leg longer than the other, I know this sounds daft but I now know that it’s when I feel off balance and one leg seems to drag, I would sit down some nights and feel like the inside of my head was spinning for a second. I didn’t go to the doctors that much so nothing was ever investigated further.
My daughter has similar issues to mine but has supposedly had the gene test on the NHS it came back to say she doesn't have the CD genes. I asked the gastro for the IGG test and was told that it wasn’t available in our area, how true this this is I don’t know because the gastro made it clear she wasn't happy about giving her the gene test and this test failed at the lab, we were not informed and another had to be taken when we chased it up. We did officially complain and had a meeting with the specialist. My daughter has been doing a degree and our GP said that once it was finished she would need to go to a specialist to see why she has had all of her health issues, ME, Fibromyalgia, last year they thought she might have MS but ruled it out, her Vit D is low and she requires Vit B12 every few weeks, she was given the choice of going to see a gastro or neuro specialist and has chosen the neuro after the experience we had at the gastro clinic.
I can completely understand you wanting a diagnosis as I am one of the unfortunate people whose DH didn't go and I didn't feel well after going on the GF diet, which i found really frustrating. I think if I hadn't had a diagnosis I might have just given up on the gluten free diet. I did start to feel better once I gave up dairy though.
You are certainly a case in point of coeliac not following a classic pattern, tm. Looking at your symptoms, you looked more as if you were suffering from classic allergic reactions, with skin disorders and asthma. It didn't really look like coeliac, per se, more like you were eating or using something that might not agree with you, which could have been anything from shellfish to your shampoo.
That said, I can't believe your docs misdiagnosed DH. It's a very clear-cut looking rash, I think, and given that it was combined with the other symptoms you had, it should have been yelling coeliac at them. It would have at me, and I'm not a doctor (but I've obviously read too much about coeliac disease!)
I have similarities to you. I've had chronic urticaria since the late 90s. I get it every summer as soon as the sun comes out and each year is worse than the one before. I now have purple stains on my ankles which are permanent damage from the yearly rashes. Very unsightly. I have had gut issues since I was a child: bloating, constipation, abdominal pain, indigestion, acid reflux and sensitivity to things like aspirin and ibuprofen, and chocolate and coffee, and, and, and...
Nowadays, I've acquired a load more allergy type reactions, including a rash I've had for more than 8 months (not DH, sadly), which MIGHT be Pityriasis Rosea; dry eyes and mouth, subclinical hypothyroidism, neutropenia, anaemia, and I also had/have some kind of B12 problem and a Vit D deficiency. I also had gallstones, which were probably from the hypothyroidism. But who knows what or where it's all coming from.
I keep telling the doc I feel there is a bigger picture we are missing, that I may have an autoimmune issue going on, but he just ignores me. Every antibody test I have is negative. I've been tested for IF, anti-parietal and thyroid antibodies, and I have nary a one. It doesn't make autoimmune a convincing argument!
Sadly, this is all being complicated by me taking Carbamazepine, which is responsible for a lot for drug-related illness, and I suspect I am a victim of that, so it makes it difficult to know what is 'real' and what isn't. I am cutting back my Carbamazepine, since the success of B12 injections, so I'm hopeful some of the health issues might improve. But a small voice keeps whispering, 'Yeah, but what if they don't?'
Because I have this trigeminal neuralgia, I have a great fear, obviously, of it coming back, especially as Carbamazepine is such a nightmare drug, but more so of more serious brain degeneration. I don't want to develop Alzheimer's or MS or something, so I can't rest till I find out what is really going on. My doc thinks I'm harming myself by pursuing this, but I wonder if he would be content to just sit and watch one thing after another fail and accept that that was okay and not bother looking for answers.
Well, it is what it is. I shall just keep ploughing on and hope that some day I either turn up something that makes it all make sense, or I have a sudden miracle cure! Thanks for all your help. X
Hi Chancery yes at the immunology clinic they tested me for all kinds of foods and hay fever and found i wasn't allergic to anything, that is why I think it was all related to CD, I also suffered from Cholinergic urticaria but only whilst walking when in a hot country.
Although I did have the various symptoms i rarely went to the GP's so that is probably why nothing was ever picked up on. Sorry to hear you are having a battle with your doctor, our GP gave us Vit B12 injections despite us both being over what they say is the level in this country, I took a print out of the nice guidelines with me and pointed out the neurological issues we were having.
Have you already gone GF, if you have have you noticed any changes in your health?
I believe there is a doctor in Portsmouth that specialises in NCGS, if you don't get your CD diagnosis. Have you seen this article bmj.com/content/345/bmj.e7982
Great article, thank you very much for that. Fires me up again on the gluten theory. I don't know quite why that feels so right to me, but it does. I just wish I could get something concrete, but it doesn't look like it will be forthcoming, if that BMJ article is anything to go by.
Is the Portsmouth doc Dr Kamran Rostami, as mentioned in this article?
P.S Thrilled to hear you have urticaria too. Knew that wasn't my imagination!
Hi Yes it is, as far as i know he works on the NHS so if you do a search you may be able to get an appointment.
I contacted a lady who has a website purehealthclinic.co.uk/ when I was trying to gather information on NCGS and she was helpful.
Just to let you know that last year when i went on holiday for the first time in many years I didn't get the urticaria, mine was only when i walked, if I lay in the heat it never appears and never over here either. I think the GF diet must have cured it
That is good to know, thanks. Oddly enough, I have a similar thing. It's walking in the sun that always triggers my first attack. It's more likely to happen if I get hot, swollen feet. Once I have that attack though, it then reacts to any sun exposure at all. But I'm now looking forward to getting rid of it finally when I go gluten-free!
Many thanks for the link. I'm going to check that out, and I think I've found the doc via Google, so all round a success. Thanks again for all your help - you've been great. X
Hi Chancery,
I am not sure now because you have confused me too but I would assume (rightly or wrongly) that your igG levels are not deficient, just very low because you are within range.
A low igG level is not a diagnosis of Celiac but means you may be more susceptible to it as Celiac is confirmed by IgA Anti-tissue Transglutaminase Antibody (TTG) and/or iIgA antiendomysial antibody (EMA). If both these tests have proved negative then igG can be measured but only a very small number of Celiacs are deficient in these antibodies anyway.
My Mother had every test going and showed negative results in everything. She suffered years of pain and bleeding and later when they biopsied her intestines, they were found to be completely diseased and the large was removed. She now has an ileostomy and still suffers great pain and discomfort.
If you think you might have Celiac disease it is best to get a biopsy, although not very pleasant.
Flower, I meant to ask you yesterday, but forgot in all my self-induced confusion, you say your mother was undiagnosed coeliac as she had all negative test results, and that she suffered with "years of pain and bleeding". Could I be intrusive and ask what exactly your mother's symptoms were? Did she have the classic coeliac symptoms of dia', weight loss etc, or were they different in some way? I just wondered as they took so long to diagnose her. How long WAS the poor woman stuck with it before diagnosis?
She had all classic symptoms and bled from her bottom but hid it all as couldn't face the operation. She has never acknowledged her illness and always refused help or diet changes.
Five years ago she hemorrhaged so got whipped into hospital for an emergency illiostomy. The intestine was completely ulcerated and must have been agony for her. They said the small intestine was diseased too but couldn't take any more out.
She is still in pain, still hiding it and refuses to change her diet but she is 85 now and just 5 and a half stone, so I let her be.
Oh poor thing - how awful. Why did she refuse to change her diet? Just because she liked her toast too much, or because she didn't believe in coeliac? Or was it that she wouldn't accept that she had it?
She broke her hip recently so I arranged a nursing home for her but she wouldn't stay. Now she is home alone with only her zimmer for company, refusing to let the carers in.
What a nightmare Chancery.
Flower007
• in reply to
Chancery,
Have you read Breaking "The Vicious Cycle" by Elaine Gottschall.
It is a diet supposedly tailored to Celiacs requirements. It concentrates on the type of carbs (sugars and starches) that help to reduce inflammation in the intestinal tract.
The book claims that people who have been treated unsuccessfully for years on cortisone, sulphonamides, digestive aids, elimination diets, anti fungal drugs, antibiotics, etc, have done well on this diet after one year.
No, I haven't seen that one, Flower. Just going to look it up now. Thanks for the recommendation - it sounds very interesting. I'm always looking for any material that throws light on the neurological issues of coeliac, but they are hard to find. Most people concentrate on the classic gut issues.
Did the disease have any neurological effects on your mother, by the way? Do you think that's maybe why she reacted so bizarrely to her diagnosis instead of taking care of herself? Do you think it had maybe already caused some dementia/brain damage before they discovered it, since she was left with the condition so long?
Maybe my mother and yours are of a similar age then, because mine definitely has similar characteristics. Mine was exceptionally competitive growing up and one of her big things was to never be ill. Even if she was ill, she just pretended she wasn't and kept going through it.
It's a few years since I last spoke to her, but even then she still had selective memory and had conveniently forgotten health problems I remembered her suffering as a child.
Mine was born in 1939, I think. She was a wartime baby - maybe that made the difference!
But it's not the first time I've seen someone in medicine be very negligent of their own health. Maybe it's the fear of what hospitals and doctors do to them that does it. They've seen the full horror from the inside!
Absolutely. I read a very interesting piece once in a book (can't remember what it was now) about docs/surgeons being asked if they would take CPR and various other procedures that are standard in hospitals, and it was a real eye-opener to see that they would nearly always refuse things they hand out as standard treatment to patients. It was because they knew that CPR breaks ribs, and all the various other procedures had awful downsides or side effects that the man in the street didn't know about but they did. I remember that virtually as one man none of them wanted to be resuscitated or kept alive on life support if there was no brain activity. Tells you all you need to know...
How awful, for both her and you, having to watch her cause herself suffering. Very frustrating and distressing for you, and I can't imagine the distress it causes her.
Did you inherit the coeliac gene from her? I mean, have you been diagnosed with the disease?
No. I don't have celiac but have listened to my body's protestations so just know what it likes and what it doesn't.
Things have got a bit more sensitive lately so I have just done a comprehensive stool test and another that records what my body looks on as gluten or similar. Generally I just steer clear of all sweeteners, MGM, and citrus fruits.
That's probably very wise, Flower. It's only relatively recently that they've discovered you can have adult onset coeliac, so with your family history if you had kept eating gluten, you may well have developed the disease just as your mum did. Better to be preventative than try and fix it after the damage is done.
I've been wheat free before, never gluten, but I'm going gluten-free this Monday. I've had it with trying to get NHS testing and before I pay for expensive private testing I'm going to try the good old-fashioned elimination diet and see if it makes a difference. I know in the past when I've done it, I did feel better and brighter, but I got lazy and let myself slip back into old bad habits. I think that's also why I'd like to have a formal diagnosis - it's more motivating if you know your life is at stake!
And now you have confused ME even more, Flower. If we keep this up, between us we will have reduced each other to the level of Neanderthals!
Seriously though, your statement "A low igG level is not a diagnosis of Celiac but means you may be more susceptible to it" has me worried. This WAS a Anti-tissue Transglutaminase Antibody (TTG) test, but it's just an IgG one they do instead of the IgA version, because I have IgA deficiency, and this can cause false negatives on the IgA test. I have had the IgA one, about three times now - all low, so therefore negative, as far as I know! (Which is not a lot, as you can tell.)
However this IgG Anti-tissue Transglutaminase Antibody (TTG) test was marked "low", which I thought was very odd. And now what you say makes it sound as if it is significant somehow. I mean why mark it as low if it ISN'T significant? Do you reckon you can fathom this out, or have I now confused you beyond all measure? I'm sorry, I feel like I've reduced us to a comedy routine now!
Yes, I got an answer, thanks. Not what I was hoping for though! I'm the opposite of your poor Mum, I'd give anything to have a nice clear-cut diagnosis of coeliac, but it's not to be obviously!
No, I've done no testing other than the standard blood tests offered by the NHS, and now this not-so-standard IgG one. But no luck - if you can call a coeliac diagnosis luck!
I'm considering either getting the Cyrex Array 3 done or having gene testing for coeliac. Having said that though, I do wonder if it wouldn't be easier and cheaper to just stop eating gluten! It's the intelligent thing to do, but I'm afraid it's not the real answer to my problem and I have more at stake than just gut issues. Because my brain is involved, I am afraid that by thinking I've sorted it by giving up gluten, I might not have and further down the line it will be too late to fix the real problem - that's really why I would like a diagnosis, so I can be sure.
Still, I've never heard of anyone suffering nutritional damage from giving up wheat, so what can it hurt? Anyway, I've finally decided to go gluten-free from Monday. Like I say, cheaper, and hopefully I'll get a clear-cut idea of whether it is helping or not.
Yep, got it. Must check my multi-vit before I renew it. I know it's in bizarre places, like soy sauce, so I'll be on strict watch for it. Ah dear, more expense, renewing everything. Why does (ill-)health have to be so expensive?
..because good health is so good ! After over 50 years of working on it I think I am qualified to know the difference ! It's been a long and bumpy ride ! Swimming a kilometre daily - teaching yoga 4 times a week - running a business - having a good social life is a far cry from how things have been. 13 major ops is an awful lot of lost B12 !! - along with no terminal ileum !
Do you need everything in a Multi-Vit - ? or in fact are you getting enough of some things ? Best to supplement individually.
Really? That's a new one to me. I'll have to check mine. Now you mention it, I've seen baking powder in the Free From section at Asda's. Now I know why.
I've taken a multi-vit ever since my B12 was shown to be somehow not working right. After I discovered the Vit D deficiency too I'm loath to part with it. It's a simple low-dose thing from Lidl's. It has a broad spectrum and I feel that it's safer because I'm not overdosing on any one thing, just keeping it all ticking over.
I'm going to ask the doc to check me for copper deficiency though, because of this neutropenia/anaemia I have; I don't know how he'll react, but I think I have a good case to insist on it because there is no explanation for these conditions and they are serious, so better safe than sorry. No doubt though I won't get it without a fight. If at all.
But 13 ops, Marz. In the name of God, you are a testament to human endurance and diligence. I applaud you.
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Negative blood test and positive endoscopy?
