Gluten Free Guerrillas
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GP didn't want to test me

Hi there, I'm new to the board but have been reading for a while. Just wanted to ask your opinion on my experience with the doctor.

As a bit of a background. I'm currently seeing a rheumatologist as I've been having problems with my nerves, pins and needles, nerve pain in hands, feet legs and thighs, brain fog, incredible fatigue. Have had numerous blood tests, some have shown rheumatoid arthritis positive, others haven't so they have no idea whats wrong really. Am currently on hydroxychloroquine, feel slightly better but not as i should.

Anyway after coming back 3 weeks ago from another rheumatologist appointment and still having no proper answers I did a bit more googling and came across coeliac disease.

Ive obviously heard of it before but never knew it caused nerve problems. Also a lot of others things ticked the boxes with me. Ive suffered for years with horrendous mouth ulcers, have had problems for years with my tooth enamel, also have numerous vitamin deficiencies for no apparent reason, and have had stomach and bowel issues too.

Seeing all this i decided to see the doctor and ask for a test, well he wasn't very enthusiastic. he said apart from a bad stomach none of the other symptoms had anything to do with coeliac disease, even though i got that from the official Coeliac UK website after filing in the assessment and getting the form to give to the doctor advising i should be tested.

He did agree to me having the blood test in the end as i pushed for it, but I was wondering what everyone else thought. Do the above symptoms possibly indicate Coeliac or am i wrong?

11 Replies
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Have you been tested for B12 & Folate ? If not then also add in Ferritin and VtD. B12 results below 500 can be the cause if neurological issues like tingling.

RA is auto-immune as you know so you may wish to consider thyroid testing too. Happy to help - always good to rule out things out to get the complete picture 😊

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yes I'm on B12 injections. When tested my number was 112. I was low on folate and vitamin d too, so now take pills for them. tingling hasn't stopped though even with b12 injections every 10 weeks.

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Has your low B12 been explained ? Have you been checked for Pernicious Anaemia ? There is a PA Forum here on HU or look at the signs and symptoms on the main PAS Website. PA is also auto -immune.

How much Vit D are you taking ?

The Guidelines for Folate and B12 Deficiency that your GP should have read - state that when you have neurological symptoms injections should be every other day until symptoms improve. Tingling is a neurological symptom.

Thyroid ? Has it been checked ? I am not a medic - just a Hashi's gal with a B12 issue and Crohns 😊

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They could indicate coeliac or they could be due to non coeliac gluten intolerance. My son is under a rheumatologist for mixed connective tissue disease. He had symptoms of this (arthritis,raynauds,scleroderma,myositis) plus stomach issues as well. He has tested negative for coeliac but when we put him on a gluten free diet, all stomach issues resolved and his autoimmune problems started to get better also. He now follows a paleo diet and he is the best he has been in 3 years. We have managed to stop all his medication and his autoantibodies have reduced slightly. So if you have the coeliac screen done and its negative, you may still benefit from going gluten free. The only way you will really know is to try it and see if your symptoms resolve.

Good luck.

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Thanks for the replies.

Marz, I take 1600 iu of vitamin D a day. With the b12 the nurse said to me you must have been vegetarian for years with b12 like that, and i said no I've always eaten meat so she said it must be pernicious anaemia, but that was it. No-one has ever said anything else.

I get the B12 every 10 weeks and thats only because i said i still felt bad after having them every 12 weeks, but they said every 10 weeks was the most they could do.

LizzyCee - Ive been trying to eat more gluten for the past 2 weeks as i realised that even though i hadn't cut things out on purpose i wasn't eating as much as I've been trying to lose weight. I've felt so ill ever since I've started having toast in the morning that i already decided even if it does come back as negative for coeliac I must have some sort of reaction to it and am going to cut it out anyway. The only reason I pushed for the test really is as my mother has the same symptoms and my son suffers with a bad stomach and mouth ulcers so I want to know for sure if it says something so they can get tested too.

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The testing for PA can be a little hit and miss - like the test for coeliac. There can be false negatives. The Test for PA - the Parietal Cell Anti-bodies and the the Intrinsic Factor Anti-bodies - Anti-PC and Anti-IF. As your nurse suggested it could be PA then that should persuade your GP to test.

pernicious-anaemia-society....

You may wish to check out the Signs and Symptoms of PA in the link above - also lots of other information that may help.

healthunlocked.com/pasoc/po...

If you feel you need the B12 jabs more often then seek the advice from either link above - there are Guidelines the GP should follow - they just need to read them :-)

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Glad to hear that you made your GP refer you for a blood test.

NICE guidelines say that anyone with unexplained anemia should have a Coeliac test. All of your symptoms could be related to Coeliac disease.

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I'm CD negative but have,never wanted to go back to eating gluten since i gave it up 18months ago. I am sure i have non coeliac gluten sensitivity. i get tingling and balance issues sometimes and think it's when i get glutened. My head and thinking, and joints are so much better without gluten. and also my abdominal pains have gone.

it was a bit rough for a good few months while though while healing.

Hope you work out what works for you.

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Hi starbucks , I think mouth ulcers are associated with crohns disease. I find G . P are reluctant to do any tests and mostly guess at diagnosis. I think the website on Google have a lot more information on them. But some of the symptoms you have are also present in coeliac I believe. 😐

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blood tests for coeliac is a waste of time and not 100% what my doc told me and hes right to tell me that as its true gold standard is a biopsy of the small top part of your intestine to find out if you do and even then that can come back saying negative and yet you still notice symtoms when you eat gluten mine was negative as was my blood tests but my gut works fine so long as i stay away from gluten

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thanks for all the replies everyone. Just had my blood test so just got to wait for the results. Feeling so rubbish, but know you have to keep on eating it.

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