Wheat, Gluten and pain.

[beaton]

I thought I had a wheat intolerance so have avoided it for a year or so. Today I am in pain and the only culprit is oatcakes.(shopping day so no choice.) The thing is,when I discussed the problem with my GP and he tested me,I had been off wheat for months so negative result. Should I go back after eating gluten and be retested,can I stand the pain and is it worth it?

[myrab]

I had the same results tested after being on an exclusion diet. Guidelines from NICE say you have to remain on a normal diet with wheat and gluten for at least 6 weeks, so do Coeliac UK, my GP says why do I want to put myself through it, it might wheat intolerance or IBS, I can't seem to budge him. I would go back to your GP and explain your exclusion diet and ask if he would reconsider doing the test if you are prepared to do the Challenge and put up with what you will have to endure healthwise. There are lots of people on here that have the same negative results and some after years do get a diagnosis in the end.

[beaton in reply to myrab]

Thanks Myrab,I think I shall consult my GP again.

[Regalbirdy]

Hi beaton,

It's a difficult choice to make. If you do go back onto gluten and wheat products then you would need to be eating it for at least six weeks before you could have a blood test.

If the blood test came back positive then you would be referred on for further tests and potentially you could wait many more weeks to have these done.

Could you afford to be unwell for that long? It's often an individual decision.

If you are 100% certain it is gluten/wheat causing the problem, then many people here would say that you already have your answer.

However getting tested would mean that if you were a coeliac you would potentially get much better long term follow-up support (and food prescriptions).

But also bear in mind that if you are coeliac you could be causing further damage by eating gluten!

I did go down the testing route but unlike you I was still eating gluten at the time.

I wish you all the very best with your decision. Maybe someone else here will be able to offer you more help than I can.

[beaton in reply to Regalbirdy]

Thanks Regalbird, appreciate your comments and will bear them in mind.x

[dobido]

hi beaton i would say go for it i was diagonised a week before xmas last year i know the syptoms are rotten but knowing for sure is best, i haven,t got a very supportive gp but i am the only coeliac in my surgery so they don,t know much about it i,m able to tell him more from what i learn on here i,d suffered for years and aparrently one of the things it can lead to his a bigger chance of stomach cancer or so i,ve read elseware i lost my mum aged 64 to cancer in the apron of the stomach and for as long as i can remember she had similiar syptoms as me but didn,t think anything of it and just put up with it. if i can avoid the pain and treatment she had to go through i think it will of been worth 2 months of having gluten symptons to the year she went through

[beaton in reply to dobido]

Hi Dobido,thanks for your comments. I shall remember them when I do go to see my GP.x

[KirbieCat]

PLEASE don't go back onto gluten just so a blood test 'MAY' come up positive. Unless you've had fairly severe bowel symptoms you will never get a positive blood test for Coeliac disease and the risks of going back onto gluten are HUGE.

I went GF last year because of various issues and was accidentally glutened at Christmas time. That episode resulted in the most atrocious nerve pain you could imagine. That has never gone away and I now live on painkillers. The next time I was glutened resulted in loss of feeling in various parts of my body, some of which has still not returned, months on.

I suggest you read what Prof Hadjivassiliou from Sheffield, UK says about gluten, particularly his article 'Gluten Sensitivity, from gut to brain'. If you haven't already, also read up on non Celiac gluten sensitivity and gluten ataxia. I apologise if I come across as a bit alarmist, but the potential consequences could affect you for the rest of your life.

[beaton in reply to KirbieCat]

Thanks Kirbiecat, I am sorry you have had such a bad time. I shall read the articles and bear in mind your comments.x

[gingerninja]

I too cannot handle oats, its because they have a similar protein to gluten in them. I dont think its a good idea to be retested, your just gonna make yourself ill and depressed for a doctors, which i had to do the first time round. Just stay away from oats also. If you want to do your own little test, eat something you shouldnt, and then you will know. Even if your not a coeliac and go back to eating gluten, it will still have an affect on you anyway. I'd say it was pointless to out yourself through the pain all over again, and your doctor should have told you about oats being similar to wheat.

[beaton in reply to gingerninja]

Hi Gingerninja,thanks for your comments. I shall bear them in mind.xx

[DartmoorGuerrilla]

I was in the same position as you. The crux of it is, do you have to have a firm diagnosis? The only "treatment" is avoidance and you don't need your GP for that. I'm guessing you don't need the prescription foods as you've done fine without and anyway it's not economically viable unless you eat a lot of bread and get free prescriptions.

Other monitoring depends on your relationship with your doctor's surgery. You need to be confident that if you get other problems you will be taken seriously. That your bone health will be monitored. I don't know whether you are male or female, or how old, but you might have fertility issues that need intervention.

As to food, you don't need to explain to ANYONE that you have or haven't been tested. Just say you're coeliac and be done with it! Much easier than introducing doubt, confusion or encouraging people to think a teaspoon of flour will probably be OK!

Like you when I went GF I thought I would risk "may contain traces" foods, "packed on a line which also handles wheat" etc. but soon found out I can't. I only buy Nairns GF oatcakes now, not their normal ones. If you have issues with those, then bye-bye oats...

Presumably you read packets carefully. Gluten rears its ugly head in all sorts of places. Salted peanuts for example! I find that, outside "free from" offerings (often expensive) I have more luck in Lidl than the big supermarkets.

Good luck whatever you decide but personally I would not do the gluten challenge. You must eat more gluten than you think and for me it was unbearable after just one day. If necessary I would change GP instead to get one that accepts I am probably coeliac and monitor sensibly.

[beaton in reply to DartmoorGuerrilla]

Thank you DartmoorGuerrilla for your full and informative reply. I am a 60 year old femail, living in Cornwall. I have had an issue with bread for years,but the gluten problem has become worse of late. I think your views are the right ones for me to follow.xx

[msglutenfreeuk]

I never had the tests, I couldn't have handled the chronic headaches and muscles seizures for the time you had to eat gluten. I'm intolerant rather than a celiac, I might be wrong but I'm sure I read somewhere that you could eat gluten, go for the tests and still get a negative test result, maybe someone on the forum with more knowledge than me could advise.

Good luck whatever you decide

[beaton in reply to msglutenfreeuk]

Thank you Msglutenfreeuk,Most interesting about the tests.x

[taffy]

I just had the Gastroscopy 2 weeks ago after 3 1/2 weeks of the 'Gluten Challenge'. I couldn't stand the stomach pain for longer and my kidneys started to play up. My back pain returned with a vengeance along with the chronic fatigue and brain fog and I was informed I was severely undernourished as the gluten had prevented the vitamins and minerals from getting through. It's taking me ages to recover and I imagine months before I return to my previous health. Although the 'challenge' is the only way to diagnose this horrible condition it is a barbaric way to find out and goodness knows the long term damage it causes ........................and I still haven't had my results!!!

[beaton in reply to taffy]

Oh Taffy,I'm so sorry that you have been through all this.Somehow I think I won't bother with the tests.xx

[taffy in reply to beaton]

Beaton I wouldn't blame you! I was urged to do this by my family as 2 of them are diagnosed Coeliacs. If my test comes back negative though, I will feel a bit taken aback. My consultant warned me this may happen and then what will it all have been for? The medicos still don't know enough and don't agree about the nasty symptoms that gluten causes. Good luck whatever you decide and remember that YOU know your own body better than any doctor does!

[beaton in reply to taffy]

Thank you Taffy.x

[Lynilou]

Have you considered getting a food allergy test done? your local health food shop should be able to direct you. Not medically accepted and costs you, but interesting none the less and much less invasive. I had one before finally going back to my dr, it didn't actually pick up gluten but did pick up the dairy, I needed the biopsy to be certain what I was dealing with. Nb I cannot tolerate any oats, even gluten free ones!

[beaton in reply to Lynilou]

Thanks Lynilou,I shall bear your comments in mind.x

[deglutenous]

Hi Beaton,

I can't stress how important it is for you to go back on gluten and get a proper diagnosis. There are many health complications that can be experienced down the track from having undiagnosed Coeliac Disease coeliac.org.au/diagnosis/. I would suggest finding a new doctor, or at the very least finding some supporting evidence to provide to your doctor (although you shouldn't need to do this). There is every chance you might not have CD but for your future health it is far better to rule it out. The risk of diabetes, bowel cancer and infertility are huge. Also some CD isn't able to be treated by gluten free diet alone so if you aren't healing you need to be having follow up endoscopies to check your progress.

Good luck,

Alice

Here is a resource for you about Coeliac disease deglutenous.com/being-glute....

[Waterlily]

Since seeing a gastroenterologist earlier this month, I have been rather confused about the gluten challenge aspect. I went GF in May in desperation and as a last resort. When I saw the (very young) consultant, I said I realised I would have to start eating gluten in order to get a diagnosis. To my astonishment he quite categorically said that no way would he ask me to do this, that he did not want to make me ill again and that the blood tests would be enough! Admittedly he (personally) took a rather large amount of blood from me! Encouragingly, he seems to be quite clued up on NCGI and seems happy to acknowledge it exists, unlike many older GE's, and it was he who brought this element into the consultation. I await the results with interest though am not sure how I should view a negative result!

I would be interested to know if anyone else has experienced this non challenge approach and what the outcome was?

[beaton in reply to Waterlily]

Thanks for that Waterlily,could you pm the hospital and consultant you saw.x

[Alternative]

Yes- oats are very similar to gluten and many cannot tolerate them. Even if you can, you need to look for gluten free oats as many farmers rotate oat and wheat crops, therefore cross-contaminating the oats.

[beaton]

Thank you,I never thought of the farmers cross-contaminating oats.x