gluten allergy? help with diagnosis: hello all, I think... - EFA

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gluten allergy? help with diagnosis

alph121 profile image
4 Replies

hello all,

I think I have a gluten intolerance, and i'm looking to get tested by my doctor. However I find it really difficult to get referred by my doctor, as they're very good at sending me away to try a new pill/to "go home and rest" etc.

I want to make a doctors appointment but I want to go armed with all of the information I need so I can't be turned away and I can finally be referred to a dietitian or testing. I was thinking of writing a food diary, and I wondered whether it'd be better to cut gluten out to show how I have had none of my symptoms since, or whether it'd be best to contain gluten in my diet to show how frequently my symptoms occur. Could you give me any advice on what you needed to present to the doctor when you were diagnosed?

FYI - my symptoms are - headaches, migraine, stomach cramps, tingling sensation in both arms, fatigue, irritable bowels.

Thanks!

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alph121 profile image
alph121
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caretothepeople profile image
caretothepeople

Mayo Clinic has a guide to preparing for a wheat allergy appointment with pointers about how to prepare, including tests and questions from your doctor to expect.

The Celiac Disease Foundation also has an FAQ on their website that explains the testing and diagnosis process, including how to prepare for testing so check that out.

Write down all of your questions ahead of time. Talk to your doctor about your preference of wanting to work with a dietitian. They talk through all of your options with you and refer out to the proper source. You might also consider getting a second opinion or seeking out a specialist for further testing.

coulditbe profile image
coulditbe

I had similar symptoms as you.  I began to notice that bread and other gluten products gave me similar symptoms and it took a shale to shake off when I tried going gluten free.  I got a second opinion by doing the York test, pricey but food. I had to continue with the same diet, i.e. including gluten products, to get a test in case allergens in my blood.  test confirmed my intolerance and highlighted a few more.   I adapted my diet and felt 100 per cent better within a few weeks.  o headaches, no cramps, I felt ten years younger. I mentioned to the doc who was interested, I'm not certain the doc cares about intolerance.....

I have since reintroduced foods containing gluten, its been 6 months, and feel back to where I was so I'm happy I can control how I feel by just eliminating gluten.

I would say docs aren't interested unless presenting symptoms of celiac and then our need a blood test and further testing.  U feel the docs don't care about intolerance so I just managed on my own as I said. its taken me a year to figure it out.  the doc didn't even consider intolerance, jumped instantly to stomach ulcer or maybe gastris or maybe helicopter bacterium, I cut out gluten and was fine, that wasn't even considered!

BLAH profile image
BLAH

I went to the doc with fatigue and bloating problems. They took a blood test which came back with everything normal. I explored the idea of food intolerance and they disregarded it as the blood tests were OK.

If you think you have food issues, ask to be referred to a Dietician. We have a friend who is one and took my symptoms by the horns and was keen to help.

There are also Allergy clinics in some hospitals but these are looking for more clear cut issues like peanuts etc but worth considering.

Advice is go with things you want, not look for suggestions. A large number of doctors appointments are for fatigue and I get the impression they are well practiced at dismissing it.

Feebehabeebi profile image
Feebehabeebi

If it's coeliac you need to have been eating some gluten for the last 6 weeks for it to show up on the tests. If tests for that are negative then I guess it's worth doing your own trials to see what helps or makes it worse. Definitely keeping a food and symptom diary first would be a good start.

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