6 weeks of fun: Not a question but... - Gluten Free Guerr...

Gluten Free Guerrillas

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6 weeks of fun

guyana1230 profile image
20 Replies

Not a question but after seeing a dietician and my GP now have to eat gluten for 6 fun packed weeks before my blood test. Hadn't realised it is now six years ago since I found out about my wheat problem and had my first biopsy which was neg but had only eaten gluten for 3 weeks then. Gaviscon at the ready, yipee

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guyana1230
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20 Replies
NorthernSoul profile image
NorthernSoul

That's rubbish. I had to do the same and it wasn't especially pleasant. And I had to do it during my exams! But it's just one of those things that has to be done, unfortunately...

My advice would be to consume the minimum amount possible (a slice of bread a day is enough) and do it when is the most convenient. For me, I used to get abdominal pain and nausea about 1-2 hours after eating gluten so I'd eat just before I went to bed and get the worst of it over whilst I was asleep. I'd feel pretty grim and get the runs the next morning but I found that was the best way to do it, personally. These 6 weeks will go quicker than you think!

Liana profile image
Liana

I refused. I told the specialist I would not put myself through that kind of hell for 6 to 8 weeks. It would have put me in bed in agony. Then, not even to be sure I'd get accurate test results... no thanks. That was not for me. I'll live without a formal diagnosis and never eat gluten again. I'm content with that ... but to each his/her own. Do what's right for you.

meanioni profile image
meanioni

I did the same as Liana.

The thought of making myself that ill just not worth it. See my profile for more info. Still got a diagnosis at the end of it without the need for the pain and suffering.

KarenBC profile image
KarenBC

I refused to put my daughter through it. She'd been gluten free for ages and even a trace of gluten makes her extremely ill so there was no way she was doing 6 weeks. So no formal diagnosis but seeing as there is no treatment other than a GF diet. GP follows her as coeliac/gluten-intolerant anyway. But then I'm coeliac.

I can understand the need for it being official though.

Good luck

swarthy profile image
swarthy

I did the same as Liana and meanioni - unlike you, I'd stopped eating Gluten 18 months before I finally had my colonoscopy yet it still screamed coeliac, not to mention what we now know to be DH, and Vitamin B12 and Folic Acid deficiencies and Collagenous Colitis.

There is no way I would put myself through 6 weeks of housebound hell for the sake of at best an unreliable blood test for what purpose exactly? not to mention I risk the chances of a CC attack.

I know I can't eat Gluten and that's good enough for me.

I guess you have to do what you think right, and from what you say, you are lucky if you have found something that alleviates your symptoms - but if it goes help, it might be worth checking to ensure it won't mask the effects of the gluten, otherwise it will have all been in vain.

One of my friends had their boiler repaired and the guy who mended it had been diagnosed as a coeliac by his GP no endoscopy no gastro. The GP just said I know what's wrong with you and said you're a coeliac so go on a gf diet after he said about his symptoms.

So I think that if the diet works that's proof enough and if someone has been on a gf diet and it works then that should be good enough. I wonder if getting food on prescription means that the coeliac has to jump through loops to prove their entitlement.

Because this GP was from abroad and trained abroad they have a different attitude to 'diagnosis' and was right because he had responded to the gf diet. I also think that he was lucky that he hadn't been introduced to codex and he knew about food on prescription but bought his at his local Sainsbury's.

I think he is outside of the system and through no fault of his own but after 10 months he had no symptoms which speaks for itself. And in his eyes he is a 'diagnosed' coeliac.

I also see the heading: 6 weeks of fun as a 'tongue and cheek' comment.

tug_6 profile image
tug_6

I can't believe what i read here, 6weeks eating gluten and your coeliac? your Doctor need to be sent on a course about Coeliac i think, If i ate half a slice of bread now, in 30 minutes i would bring it up again then i would lose weight and i would have a belly ache for quite a long time. I if you can do this challenge then you don't have coeliac, you have a wheat intolorence. Best of luck to you.

NorthernSoul profile image
NorthernSoul in reply to tug_6

A gluten challenge followed by antibody testing and endoscopy is standard diagnostic practice for someone who has been on a gluten free diet prior to this. Coeliac disease vs. wheat intolerance is a histological and serological diagnosis *not* clinical (i.e. based on the severity of symptoms) so I'd be careful before pronouncing anyone as not having 'proper' coeliac disease just because they have enough willpower to suffer a few weeks of unpleasantness for diagnostic certainty.

meanioni profile image
meanioni in reply to NorthernSoul

I know the gold standard is endoscopy, but my symptoms are so severe I would not last more than a few days. Its not about willpower, I can be tough as hell, but one breadcrumb and I am off work three days, on the verge of dehydration as a result of violent diarrhoea, no energy - can't move, joint pains, IBS, rash, depression.

I also suffer from gout, hypertriglyceridaemia and high blood pressure.

6 weeks on 3 slices of toast a day would hospitalise me within the first week.

I spoke to my GP who backed me and agreed that it would be dangerous to my health to pursue a gluten challenge in opposition to the specialists, who did not frankly give a damn when I told them about my other conditions and health risks.

What's the point? I eat gluten, I get Ill. I stop I get better.

tmoxon profile image
tmoxon in reply to tug_6

Hi Just to advise that I was only diagnosed last year with blood tests and endoscope. I dont have the "normal stomach issues" associated with coeliac disease. If I do get the stomach issues they are mild. When my bloods came back the specialist said he was 99% sure I had it, and the endoscope results said that I had moderate to severe damage to the villi.

As my symptoms are not the normal ones associated with coeliac disease and I was trying to ascertain what symptoms were associated with it because I still didnt feel that well. I thought I might be getting cross contamination with eating out therefore I ate half a scone last month to see what reaction i had. I thought that if I was having issues with the tiniest amounts due to cross contamination I would be able to see if the symptoms got much worse with a lot more gluten. All that happened was I had a bloated stomach and discomfort about 9 hours later but it wasnt too bad.

Therefore I think that everyone needs to remember that we are not all the same, this disease affects people in different ways and from what I understand can cause other problems in other areas of the body that not everyone associates with the disease.

I think your comments could be misleading as they could give the impression that if you dont get sick and have really bad stomach ache then you arent a coeliac.

guyana1230 profile image
guyana1230

Hi all, can see where you are all coming from on this now, only 1 night back on wheat (only a kitkat so far) and I have no end of problems already the gaviscon helped with the stomach upset but not with the pain or anything else, not sure I can go 1 week like this let alone 6. Yes 6 weeks of fun was tongue and cheek but now I'm definitely taking it far more seriously.

carona profile image
carona

Hiya .. I have got to admit that I refused to put myself back onto gluten after my diagnosis in 2005. The hospital letter & endoscopy appt came through two months after I'd had a positive blood test result & already put myself onto a gluten free diet.

I had been very ill with numerous infections & a 18 month period of severe exacibation of Asthma. Which had ended up with admissions, paramedic involvement & several flashing light & siren trips to A&E/ Resuscitation dept.

Turned out that, the severity of my sensitivity/intolerance was triggering the Asthma each time I glutened myself.

So to me; having seen how my Asthma control had started to improve, inhalers actually having some effect.

That the amount of sudden asthma flare up's, that strangely used to coincide with meal times, had almost stopped.. That bit took a while, as had to 'train up' my family where cross contamination risk to me was concerned.

The very suggestion & prospect of deliberately putting myself through that, quite literally putting my life at risk. As knew I would be setting myself up for an Asthma attack seemed crazy to me.

Which were the words I used to the consultants secretary, when I telephoned to cancel the Endoscopy appt & asked to see him in clinic instead.

She seemed amazed that I would 'dare' to refuse a consultants request & was like a stuck record in the, going along the lines of,but it's got to be done mode.

Received a call from the man himself, very soon after.

Very much a case of , come along now dear-don't be silly, type tone.

He was repeatedly saying that the test must be done to confirm the diagnosis.

It was the only really accurate way of being really sure & was needed to dot the I's & cross the t's etc.

I'd asked him if he'd seen my hospital records? To which he replied, of course!

I then asked him if he'd actually read them?

That bit didn't go down so well, for some reason..!

I then asked him to look at the amount of emergency admissions for asthma, the treatment I had to receive & if he noticed a decline in the previous two months?

Think it was maybe at that point he began to see the 'whole' picture.

Not just from his side..or should I say the gastro part, of things.

Turned the situation around, by asking him about the blood tests & screening that the locum doctor who had been seeing me, in the absence of my regular GP.

What were the 'normal' results, for each test?

How did my results compare?

Had he ever known a patient of his/colleagues etc

Have that range of results, to then go on to have an Endoscopy

For him then to find it wasn't Coeliac Disease?

His response then, was to say my blood test results had been high.

That in his experience, he had never had a patient, not have Coeliac Disease with the pattern of results I had. So he could see my point of view, understood my refusal. Even if he couldn't formally sanction it.

That at a later date, if my condition didn't improve or deteriorated.

He couldn't rule out that I wouldn't still have to have the procedure done.

Had to point out, it wasn't the procedure I was objecting to.

It was the deliberate act of 'poisoning' myself, that I was objecting to.

Know they all have guidelines to follow & procedures to tick.

Standards/Codes of practice.

I do feel at times as though, as though these codes, don't always look at the whole situation, or even the whole patient at times.

Would never dream of telling/advising you not to go ahead with your consultants request.

But would say, if you have any concerns..questions you need an answer to.

Make an appointment to see, or arrange a time for you to telephone.

Write them down.

Then go... & ask them.

Good luck, Carona

Janey39 profile image
Janey39

If I was you I would not bother putting yourself through it. I have now foolishly done it three time and three negative results.

If you know it makes you ill thats enough! Having a positive results does not make a difference to the way you feel. As for drs they dont have to go through it and my dr certainly dont give a damn. I get phone consultations from my dr these days as to be honest they cant be arsed with a problem that they cannot help with. His advise to me the last time I went to see him was "well you just have to live with it"

You need to do what is good for you - not them :) Good luck

Jacks profile image
Jacks

I can't see how the dietitian or GP can state that this is how long you need to consume gluten for in order to have a blood test - so they're saying it takes 6 weeks to kick off antibodies in your bloodstream? I think they are confused with a statement (somewhere) that says you need gluten for 6 weeks for a significantly damaged gut - not the same thing.

I had a 2 positive blood tests but went GF after a dermatology DH diagnosis. I was later bullied into a gluten challenge by my GP for an endoscopy, but upon becoming seriously ill after only a few days of it I cancelled the endoscopy. The consultant told me that the few days would be enough for a result. (They were.)

With hindsight I wouldn't do that again. It didn't benefit me in any way. It just made me another statistic, I'm not any better thought of and now I'm seriously anaemic.

Do you know they sell a self-blood test kit in Boots? I saw them last week.

carona profile image
carona

Thanks for the info about the kits in Boots Jacks, both of my daughters have shown the signs/symptoms of varying degrees of sensitivity to certain foods, bread being a big problem.

Both have been diagnosed with IBS since their teens.

This practice knows about my diagnosis.

As their mum, it frustrates me that this cavalier attitude could effect their long term health.

meanioni profile image
meanioni

Like some others here the local gastro team tried to bully me into an endoscopy. I explained how ill it would make me and how the subsequent risk of dehydration would cause problems with my hypertension and gout. The consultant doctor seemed amazed and gave me a hard time. I refused and wrote to the head gastro doctor who repeated the same line.

I was also worried about the risk of side effects or more permanent damage.

In the end I went back to my (sympathetic) GP who agreed it would be dangerous for my health and recommended a doctor in a private practice. He look one look at my details, the family history and fact that quote: "you stop eating gluten, you get better..." and pronounced me coeliac on the spot.

Having gone through all that it was a phenomenal waste of time - they told me something I knew already.

This has not magicked up any additional benefits - my surgery never do annual checks (I know more about Coeliac Disease than they do), the dietician told me I was doing a good job with my diet and briefly got prescriptions - but as they have now clamped down in Sussex and only offer "crap" gluten free foods I don't do those any more either.

The only lasting outcome from this process is that now it is more difficult for me to get life insurance!!!

I personally would only counsel it if the symptoms are not clear cut - e.g. if going on a *strict* gluten free diet does not eliminate symptoms or there are other symptoms (such as blood in faeces, etc (which could be a sign of bowel cancer).

Even then the process sounds positively mediaeval and I can't believe in this day and age that there is not a more sophisticated way of diagnosing it as mainstream practice....

NorthernSoul profile image
NorthernSoul

People react differently- for some a reaction that's severe enough and lasts for long enough to induce tissue damage on biopsy might take 8 weeks. For others it might only take a few days and that damage might last for months. I have no idea what you mean when you're referring to a 'defect' in food...

As for your anti-gliadin antibodies: half-life is around 120 days. If your levels were extremely high and you've had the odd minor exposure then having a level of 42 isn't particularly odd (and not drastically high either), even if you don't have histological damage.

I hope you've been back to your GP with regards to your BP...

NorthernSoul profile image
NorthernSoul

Just to add to this discussion. One of the consultant paediatricians whose firm I was attached to last term told me that within a few years, blood tests will probably become the only diagnostic criteria in order to diagnose coeliac simply because of how increasingly it is being recognised and the numbers of patients being referred for endoscopy.

NorthernSoul profile image
NorthernSoul

As I said: people's immune systems react differently. If you're not interested in a logical explanation for your slightly elevated antibody levels then I don't know what else I can say...

NorthernSoul profile image
NorthernSoul

Probably a combination of anti-endomysial and anti-tissue transglutaminase antibodies as these are the most sensitive/specific. Anti-gliadin isn't as good. HLA testing is next to useless in that situation as so many non-coeliacs have DQ2.

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