Struggling With NHS Protocols (UK)

[CR5442]

Has anyone else here had to go through endless meetings with doctors and dieticians in the NHS to come up drawing a blank unless you eat gluten excessively for six weeks to get a biopsy? My doctors won't write me down as celiac until I do the gluten six week challenge. They won't believe me when I say that I am getting better, even though there are still thinks like leaky gut and adrenal fatigue to contend with. They seem to think that immediately you stop eating gluten you get better???!!! Now we all know that recovery of the villi can take anywhere from 6-24 months. Is it me or are they being really dense? Or perhaps it has something to do with lack of funds... Am totally frustrated. Has anyone in the UK on here gone private in order to get DNA testing done without doing a gluten challenge? I really want to know at least that so I can watch out for it in my children. Rant over!!!

[saintmaybe]

Has anyone else here had to go through endless meetings with doctors and dieticians in the NHS to come up drawing a blank unless you eat gluten excessively for six weeks to get a biopsy? My doctors won't write me down as celiac until I do the gluten six week challenge. They won't believe me when I say that I am getting better, even though there are still thinks like leaky gut and adrenal fatigue to contend with. They seem to think that immediately you stop eating gluten you get better???!!! Now we all know that recovery of the villi can take anywhere from 6-24 months. Is it me or are they being really dense? Or perhaps it has something to do with lack of funds... Am totally frustrated. Has anyone in the UK on here gone private in order to get DNA testing done without doing a gluten challenge? I really want to know at least that so I can watch out for it in my children. Rant over!!!

USian here, so I know nothing about the NHS. My doctor won't test me for gluten unless I challenge for at least two weeks. I think the newer tests are more sensitive?

Anyway, I've already paid for private testing to do genetic tests, but I have no idea what's available in the UK. I'm sort of meh on the whole established medical hierarchy anyway, and don't really care if I ever have an OFFICIAL diagnosis. They're there to push pills and reinforce norms, not think outside the box.

Unfortunately, celiac and gluten sensitivity are at the frontiers of medical science and are not well understood. They're complex diseases involving multiple systems. I can tell you from personal experience, this type of problem is not the kind of problem the schools train doctors to fix, or even to be able to understand.

You think you're annoyed with THEM? They're annoyed with you, coming in with your many medical problems and not presenting an easy solution that can be fixed with a surgery or a pill.

I got fobbed off today for six months from my Doctor with a "Keep Up the Good Work!" It was a little jaw dropping, but, like I said, when you have low expectations anyway, you can't be massively disappointed.

[navigator]

Hi

I'm in Scotland and I'm currently back on gluten for the scope and biopsy. My daughter was diagnosed two years ago and she immediately went gluten free. She had her scope 5 weeks later and doc was unhappy when she informed him of this on the day but he went ahead with the scope. Even with being gluten free, there was still alot of villi damage.

I got the blood test in May, after 9 months wheat free, and although the antibodies were low G.P. told me that due to my daughter,my symptons and that I had been wheat free for so long prior to test,that he considered me to be coeliac. I got a bone density scan and blood tests for vitamins, thyroid, folates and glucose. I didn't want to get scope as it meant 6 weeks back on gluten. He supported my decision not to do this. However, after I resigned from my work due to being summoned to disciplinary hearing as I'd been on sick leave 3 days in January and one month in June (went back to work against G.P's advice and hit rock bottom), he persuaded me that it would be in my best interest to get the scope.

My other daughter got tested after me, had not been gluten free, and tested positive. Due to the high levels of antibodies and family history she did not need to get the scope for diagnosis.

I hate being back on gluten but having agreed to have the scope did not want to risk getting a false negative. To be fair the doc at hospital asked me to try and stay on gluten for as long as possible but that if I felt I had to stop he would still do the scope.

I would keep a close watch on your children wither you have an official diagnosis or not and ask to get them blood tested.

[Reba32]

I'm not in the UK so don't know much about the NHS

the gluten challenge can be incredibly painful, but in the long run may be beneficial to you, for reasons that navigator above has run into. If you have a definitive diagnosis, and you get sick and need time off work, it's easier for you, and more difficult for an employer to give you a hard time about it.

I understand why you don't want to do it though, I've had to do it myself, but in my circumstance, I *needed* the diagnosis, so that people would take me seriously.

[nora-n]

I am in Europe, too, and I paid more for the shipping than for the gene test at Enterolab in Texas.

I had a gene test here but they only test for positive or negative for DQ2 or 8 so this did not help.

The double DQ5 explained a lot to me, the neuro issues and extreme sensitivity.

(Hadjivassiliou found that about 20% of his gluten ataxia patients were DQ1)

[sariesue]

That's because a positive biopsy is still considered to be the gold standard for diagnosis. I don't know about for NHS, but is it possible that the dr's can only use the standards set by NHS to make a dx? Also, does your dx is determines what treatments they will allow. If you do a gluten challenge would they approve testing? Because if they would garuntee celiac testing both the blood work and biopsy after a gluten challenge, why not do it? Or at least attempt it? You could stop those endless dr appts if you do the test they need. Or you can accept that you don't have a dx and continue to be gluten free on your own and have the difficulties of being self diagnosed.

[CR5442]

Thanks everyone so much for your answers! The problem i have is that gluten triggers severe migraines frequently. I am on my own with my children and we drive a lot up to my university. I just cannot risk having an aura whilst I'm driving... it would be really dangerous! I can't take 6 weeks off university or I won't get my degree in herbal medicine either. It's so tricky to know what to do. The reason I want the diagnosis is more to get my family to understand that there is a reason I am such a tricky eater and there is a reason I keep a close eye on what my children eat. When your daughter wakes up every morning for weeks complaining of stomach ache, then stops complaining when you switch to gluten free, it is a bit of a tell tale sign!

Does anyone here see any reason why I shouldn't keep them free of gluten even without a diagnosis?

Navigator, it is really interesting what you said about the NHS in scotland and your doctor. He seems a lot more understanding than the English docs down here. I wonder if they are being so tricky here because of the funding differences. I know in scotland you don't pay for prescriptions, perhaps their budget for these procedures is more. I really get the idea that my doctors are trying to avoid testing for anything. They tested my blood and refused to believe anything was wrong because the TTG came back negative (I was gluten free at the time) and all my vit/min levels were fine... But again they didn't think to ask if I was eating gluten or supplementing (which I was big time!). I'm wondering if I could even pretend to eat gluten, or eat a very small amount each day, just to say I am following their requirements, without really going for it. I know my gut is still not fixed as occasionally I get the whole food racing through feeling, foggy thinking, itching etc. Surely even after 10 weeks some damage would show?

Keep the answers coming everyone. Really helpful. Might give me some new ideas. Perhaps doing a capsule endoscopy privately might be the answer as I could have that done sooner, and also it would be more thorough than the two or three tiny samples they take in the NHS endoscopy which often test negative as they only look at the very top part of the small intestine??

[CR5442]

I am in Europe, too, and I paid more for the shipping than for the gene test at Enterolab in Texas.

I had a gene test here but they only test for positive or negative for DQ2 or 8 so this did not help.

The double DQ5 explained a lot to me, the neuro issues and extreme sensitivity.

(Hadjivassiliou found that about 20% of his gluten ataxia patients were DQ1)

Does this mean that DQ5 and DQ1 also show propensity for Celiac? I know I have severe gluten intolerance because my acupuncturist tested for it. Perhaps adding the gene test to that diagnosis would be enough for me to be taken seriously at least by my family and friends. Every time I go away my friends give me pasta for dinner, and overnight I get sick, can't sleep and feel like i've been out on a bender for 24hrs! (not that I have ever been out on one for 24hrs, that just gives you and idea of how crap it makes me feel!).

[nora-n]

There are some forums for those with neuro symptoms from gluten, and they usually have negative gut biopsies and DQ1.....

Just google hadjivassiliou and you get several articles on DQ1 and gluten ataxia.

The antibodies responsible for gluten ataxia are antigliadin, and ttg-6, those for DH are ttg-3 and those for ordinary celiac are ttg-2.

Professor Mario Hadjivassiliou is in the UK.

[CR5442]

There are some forums for those with neuro symptoms from gluten, and they usually have negative gut biopsies and DQ1.....

Just google hadjivassiliou and you get several articles on DQ1 and gluten ataxia.

The antibodies responsible for gluten ataxia are antigliadin, and ttg-6, those for DH are ttg-3 and those for ordinary celiac are ttg-2.

Professor Mario Hadjivassiliou is in the UK.

This is awesome! Thank you Nora-N. I might even contact the professor directly as Sheffield is quite close to where I live. Wouldn't it be great if he could give me some answers to the Celiac/gluten sensitivity symptoms and make diagnostic suggestions. Interestingly he has done a piece on a man diagnosed incorrectly with MS, when it was actually celiac mimicking MS. My Dad has MS! And severe digestive issues!

[nora-n]

About MS, many of them have started a gluten-free diet since it seems to help them anyway. As for diagnosis, they are often given steroids and other immune suppressants and at least steroids make diagnosis impossible, as steroids cause false negative gut biopsies.

[Reba32]

talk to your doctor about how much more it's going to cost the NHS to treat your symptoms for the rest of your life, rather than getting you a proper diagnosis and treating you correctly for Celiac now! Something I wish the doctors here in Canada would get thru their thick skulls as well! SOOOOOOOOOO many times the symptoms are treated, just throw pills at it and then some more pills and more pills until the patient dies a slow agonizing death.

I think if your children do well on a gluten free diet, then you should stick with it. If they can stick to it at school and at friends' homes as well, that is. Without a definitive diagnosis, like you said, it's difficult to get the rest of the family on board and to understand the urgent necessity.