Gluten Free Guerrillas
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Can anyone help me please:-

My boyfriend has all manner of things going on and we can't get to the bottom of what is wrong. He has been non gluten for quite a while and his G.P. has asked him to do a coeliac/blood clotting blood test. I suspect that as he is already non-gluten nothing will show up. Would you know how long he would need to eat gluten again before a blood test to have any real answers?

Thank you

24 Replies

Hi, does he have a history of migraines etc.... as if so the test will be for Hughes Syndrome/APS, if so come back to me, as I or one of my colleagues on another forum, (some members on this due to associated gut issues), can help. MaryF


Thank you for replying so promptly MaryF, no not a history of migraines. I believe he is low thyroid but he is within range with TSH, he also has adrenal issues having seen Dr. Peatfield. The main problem is chronic fatigue, very white faced, with black marks in the corner of his eyes and brown bags under his eyes. He eats enormous meals and then is straight in the loo. Last week some very nasty black bruises came up on his legs for no reason. His belches are unbelievable it is like living in a zoo. I believe he is anaemic and suffers from malabsorbtion but proving it is the problem.

Thanks again


Ok Hughes Syndrome/APS can present in many ways... doctors are often very rude about Dr Peatfield but he is great for Thyroid and Adrenal issues. If he is having black bruises like that they will be looking at his platelets. Thrombocytopenia is common with Lupus and it is also possible to have this AND Hughes Syndrome, Thryoid, Hughes/APS and SJogrens often go together and some have Lupus also. I have all of these. Also be aware it is possible to be fully gluten intolerant without having fully blown Coeliac DIsease.

Also make sure dr looks out for B12 deficiency also levels of Vit D and iron.

Come back to me if you need any more help. MaryF


Thanks for all the info' MaryF very helpful, will look into it all tomorrow.

Poor you sounds like you have a lot on your plate.


Hi. Ive been looking into the whole celiac thing as I'm waiting for tests and i thought that if i cut out gluten i could see for myself but it said on the Internet that you need to have gluten in your diet for 6 weeks before tests. I hope this helps. X


Thanks Katchc I think I read the same, yes very helpful. x


You say that proving anaemia and malabsorption are problematic - yet they are easily shown on specific blood tests. If your GP thinks they are unnecessary you could get them done privately.

If the rushes to the loo are diarrhoea then he should seriously ask for camera studies at both ends - asap. Good luck.


Thank you Jacks, will look into it.


Has he been tested for heliobacter pylori - bacterial infection of the stomach?

Also have Vit B12 and folate levels been tested.

Does he drink any alcohol?


Yes tested for Pylori. He is taking B12 and his level is at 700+. Folate above normal.

He was an alcoholic for 4 years more than 20 years ago. What triggered his malaise now was sepsis in his knee 2 years ago, he had masses of strong anti-biotics and went downhill after that.


Does he eat and dairy like yogurts?


Yes, he eats probiotic yoghurts.


I think it is three weeks but ask your doc. Ask them to check for Chrones disease.


Thank you Lancome, he has had so many tests, but not sure if he has had Crones test yet.


Get him to a homeopath. They will be able to test him to see if he has any allergies or intolerances. Simple and painless.


Hadn't thought of a homeopath, more food for thought. Thank you barryd.


You should ask the doctor but I think it is 6 weeks. If symtoms are too bad while eating gluten ask if the tests can be brought forward.

You need to find out the situation in your local area regarding waiting time for tests, and remember there are 2 stages to the diagnosis: blood test + endoscopy. You need to continue eating gluten throughout. In some cases doctors are prepared to diagnose without this endoscopy, and sometimes the endoscopy and blood test are done at the same time.

The coeliac test is nothing to do with blood clotting, it tests for antibodies to gluten. You only make these antibodies if you are coeliac and have ingested gluten. So you have to ingest enough gluten for the test to work. The antibodies attack the gut lining causing damage which shows up in the endoscopy. This damage prevents you from absorbing food properly causing a huge array of symptoms, from diarrhoea or constipation to osteoporosis, mouth ulcers, depression, anaemia, lethargy, low immunity to infection etc.

Worth the hassle of getting diagnosis to give you the incentive to follow the diet strictly, and to explain to others that you are doing it for medical reasons not dietary fad. The diet must be followed strictly to work and allow the gut to heal, it is quite tricky at first so should not be undertaken lightly. Once you are established on the diet the results can be near miraculous, and it becomes easier.

Coeliac Uk have a good web site and there is also the gluten free message board to ask about recipes and other practical aspects like which cafes near you are well equipped for gluten free, and for general moral support.

Good luck and I hope he gets better, your support will help him.

G (several coeliac relatives including son)

1 like

I found your response GillM particularly interesting. Re looking at the blood test form, I am not sure it is testing for coeliac. All so confusing as the situation has been going on such a long time with tests tests and more tests. However, I am interested in the diet you mention, presuming it is to heal the gut? Everything that is wrong starts in the gut that much I am sure of. Would you mind directing me to the information on the diet, so I can take a look.

Thanks again.


Hi Margo,

You're correct in your suspicion that someone who is gluten-free is extremely unlikely to test positive for coeliac disease (unless they go back to eating gluten). However it's worth remembering that you can be a gluten sensitive without being a coeliac.

If you can get your head around them, then the NICE guidelines CG86 may prove useful to you.


Thank you Regalbirdy, will take a look at the NICE guidelines.


I'm afraid I don't know the answer to your question, but after a tonne of similar investigations my partner and I fought for a referral to a dietician. Like your partner he was windy central, and gulping down food but losing weight because none of it was going in to him. He was also in agony with stomach cramps and had huge rings under his eyes.

He's now on the low FODMAP elimination diet, and is a lot better. It seems stress brought on some odd allergies to certain chemicals, so he was reacting to avocado, blackberries, dairy, broccoli, pasta, bread and all manner of foods I thought were good healthy plain cooking. We're doing a slow reintroduction and the speed in which the symptoms return when something doesn't agree with him is quite shocking.

I really hope you get the diagnosis and answers you need, I know how distressing it can be to watch someone you love struggle so much.

Here if you need us!


Thank you for your kind response fneepette. We are going down a similar route, my brother who seems to be becoming an expert on these matters, manage to reduce his thyroid antibodies with diet, has told us about his diet. It is pretty strict, and we are going to give it a go when we get back from holiday at the end of the month. The target is to mend the leaky gut, which is at the root of all our problems. There is a lot of info' out there on leaky gut, sort that and hopefully all will be ticket boo. Watch this space!


does he feel better without the gluten? then for his sake i would not go back to eating it. it takes months to get it out of your system. read my post on celiac, b12 and more. i hope it will help with some of his issues. don't forget it took time to get to this stage, give time to get better. sending you wellness.




John is no better Ramonalisa 1, in fact he is worse with more issues to contend with. However all is not lost, we have decided together to do a special diet that my brother has done and is still doing with remarkable results. The idea is to heal the gut, it means cutting out a lot of foods, and of course gluten, then gradually re-introducing certain foods, but possibly a diet for life.

Will read yours posts, thank you

Watch this space!



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