GP says isymptoms couldn't possible be a gluten allergy

[lotuseener]

I have had major problems over the last year or so with numbness and tingling in my arms and hands, aching pains in my joints and muscles, constant fatigue which made every day almost unbearable and painful swollen hands every morning after I woke up. I also had some digestive problems like bloating and wind but nothing worse than that.

A friend who went through almost identical symptoms a few years ago gave up gluten and her symptoms disappeared and she urged me to give eliminating gluten a go. I did this about 3 weeks ago and my life has totally changed. I have absolutely no aches, pain, numbness, tingling or exhaustion anymore. This is the best I have felt in years. I have energy to get through every day and don't usually feel tired until bedtime.

I have been through a series of blood tests about a week after I gave up gluten, including a test for coeliac's which came back negative. I saw the GP this week and my coeliac's test was negative and he said that because I don't have more severe digestive problems that are like IBS than I can't really have an allergy to gluten and thinks my newfound physical wellbeing is not related to eliminating gluten.He thinks all of my physical problems could be physical manifestions of depression. I did have pnd with ds2 but have been off of prozac for 10 months now. Compared to how I felt with pnd I don't feel depressed but I did feel like absolute hell every day before I gave up gluten.

Should I try to get an allergy test or just do what is working for me?

Must proofread better!!!

You need to eat lots of gluten before a test for coeliac disease so they can look for the gliadin antibodies.

I would arrange another test and have a big plate of pasta the night before, with a good helping of toast the following morning.

If you can afford it, go see a nutritionist. This GP sounds useless. You are obv feeling much better gluten free and he thinks you are depressed? FFS!!!

Good luck

i believe for a test to work you have to have been consuming the problem food, so that could be why nothing showed up

Yes I told him that I hadn't had gluten in my system for about a week before the test but he said that coeliac's would still show up after that long. I was under the impression that you had to eat it right up until the test! I just got the feeling from the visit that he wouldn't even consider the possibilty of gluten causing my problems.

If the changes you have made are making you feel physically better, hence making you mentally better, stick with them. You know you the best. You may have a sensitivity to gluten and not an allergy as well which could be another reason it doesn't show on tests. Like almondfinger says, go see a nutritionalist or naturopath. They will get down and dirty with what you consume and show you how to monitor what you eat with physical symptoms.

I think it would need to be out of your system for longer than a week but the blood test seems to often produce false negatives. My mum (diagnosed coeliac of almost 50 years) goes to see Prof Kumar at St Barts and I'm sure last time she went she came home saying that some coeliacs seem to show their symptoms with nervous symtoms such as tingling.

Can you see another GP in the same practice? Alot of GPs seem to have an old-fashioned view that unless you're obviously malnourished and anaemic (as my mum was 50 years ago) you can't be coeliac.

Excerpt below from HERE

Avoiding a false negative result.

To obtain the real status of the condition it is necessary to consume food that contains gluten for a week before blood is being taken for the test. This way, if truly having Coeliac Disease there will be enough time for the immune system to produce antibodies. The presence of these antibodies determines the diagnosis of the disease. Abstaining from food containing gluten will stop the immune system producing the antibodies needed for detection in the test, and people intolerant to gluten will end up as being told to be negative.

I stand corrected, GotArt, re. the length of time you need to have been eating a normal diet but I know at least a couple of people who had negative blood tests and went on to have a positive biopsy. Perhaps they didn't eat enough gluten in that first week?

Maybe they just didn't eat enough for their bodies to produce enough of the anti-bodies to give a positive. At least they were able to get a biopsy to say indeed, they were coeliac... not sure what the term would be... but maybe they had just enough of a result to get the biopsy done.

I just couldn't imagine having to eat something for a bloody week that makes you so ill just to get a positive.

I am anaemic which started showing up on blood tests after ds2 was born,which was also the same time all of my physical symptoms started. I am not malnourished though,unfortunately there has been no weight loss side effects here!

Sorry.. walked away to deal with DD so last post a little scattered. I meant maybe they didn't have quite enough antibodies to give a positive but enough to instigate a biopsy.

I was told I had to be eating gluten for 6 weeks to 3 months before the tests. Especially for the biopsy. I had some of the symptoms you describe, other than the swelling, and i was anaemic and vitamin deficient with headaches. I also had bone issues as i probably had it for years. My tests were all strongly positive except the over the counter one from boots which had a faint line 10 mins after the test window. I am not sure what i would do, maybe ask for some more tests?

But you probably are malnourished, lotuseener, you're anaemic which is probably due to iron-deficiency. If you are coeliac you could be missing out on several vitamins and minerals. My mum was only diagnosed after my eldest sister was born (she was severely anaemic) but had been having problems with diarrhoea and vomiting for years. It was still a "new" illness then and so although she had classic symptoms it took a long time for a diagnosis.

Does your GP realise that 1 in 100 of the population have coeliac? Not all of them have the "classic" symptoms. Oh and as to the suggestion of it being a physical manifestation of depression, being vitamin and mineral deficient can cause depression.

Thanks for the replies. I don't really know why I want a proper diagnosis even though I seem to have fixed what has been ailing me. I think it has to do with my symptoms being real and valid and not just dismissed by the gp.

I can't imagine going back to eating gluten for the sake of a blood test though. I had 1 custard cream the other day and fely the effects from it for 2 days. Is there anyone besides a gp at my practice that could diagnose?

Really you need the GP to refer you on for a proper diagnosis. However, it's occurred to me that you were (are?) anaemic. If you want to continue with the diet maybe your GP will accept that you may be coeliac if your haemoglobin levels rise. Have they put you on iron for it? I'm assuming they have at least checked that you aren't anaemic anymore?

I am interested in "why a diagnosis" if you know it causes a problem and avoiding it fixes it. (I'm in a similar situation with my DS and don't want to make him horrifically ill for 6 weeks just to prove it)

Some HCP's are much more open minded about intolerences and that exclusion and reintroduction of suspect food is proof in itself as skin prick and blood tests test for a specific reaction, not every possible reaction.

I would request tests to see if your vitamin levels are OK, perhaps consider seeing a nutritionist privately and thik about the fact that while eating wheat, if sounds like you are not absorbing your food so probably better off without it. You are unlikely to be malnourished without wheat in your diet - there are lots of books on this subject. You may not be coeliac, but you may be intolerent to wheat.

I know my mum has annual check ups as she's been diagnosed and assume that is normal (and necessary) for all people with coeliac. If you have a diagnosis you can also get a certain amount of food on prescription which years ago when you couldn't buy it anywhere was vital and is now useful (it being quite expensive).

I don't think a skin prick test is possible for coeliac as it's not an allergy but an intolerance and you need to digest it. Of course, as you say, MistyB, the OP might have a reaction to wheat and not gluten.

Diagnosis is important as with coeliac you get things like bone scans and there can be rare complications that need monitoring. I also find people take you more seriously with a proper diagnosis. Also the prescriptions, although some PCTs are cutting back.

You can get the tests done privately through a nutritionist or naturopath. If you can afford it, it would really be worth your while seeing one anyway just to put you on the right track with your diet and to help you maximise your nutrient intake and status.

I am currently in my final year of nutrition study. If you are in London you can see student practitioners under the guidance of qualified naturopaths for very little - if cash is a problem.

Le me know if you would like me to send you the details. We also have colleges around the country.

Almondfinger, what sort of testing would that comprise?