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UK: Have you been successfully diagnosed with gluten sensitivity/intolerance by your GP?

Answered on August 19, 2014
Created November 11, 2012 at 4:31 PM

I have seen a GP who pretty much said gluten sensitivity and intolerance is made up and it must be IBS. Also heard it's quite hard to pin down sensitivity when they are slight and some of the test are only available in US. What kind of test would they have to do and are they available on NHS?

245cbe47a4a092c07f494233c4c28a5c

(269)

on January 10, 2013
at 09:33 AM

Ally, why are you stressing about what's "right" if you feel good? This seems unnecessary. If you are fortunate enough to feel well and feel healthy, then you probably are. There is very little "truth" or "proof" to nutrition science, unfortunately, because so much of it is propagandist or just plain bad science. The best test is how you feel on a daily basis. Learn to listen to your body and then trust what it is telling you.

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on January 06, 2013
at 05:24 PM

that's the things, I still feel very well eating gluten, but all this paleo info is getting me confused and I want to make better decisions for my health and wellbeing. If they are proven to be true, much easier for me not to cheat :)

245cbe47a4a092c07f494233c4c28a5c

(269)

on December 24, 2012
at 10:52 AM

I agree with you, MiMintzer. Upvoted and elaborated in my own answer.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on November 12, 2012
at 03:33 PM

You are right. Grain-free, lactose-free and eggs-free. I forgot. Source: Terry Wahls.

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on November 12, 2012
at 01:00 PM

isn't the problem that they test for one protein, when in fact you can be sensitive to any of them in the gluten molecule?

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on November 12, 2012
at 01:00 PM

also I had a chat with Diane Sanfilippo about going gluten free for elimination diet, and she said it's needs to be grain free and for longer than 4 weeks to see real results.

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on November 12, 2012
at 12:58 PM

I did the gluten free thing for 20 days and on the 21 day it was my bday so had birthday cake. I had diarrhoea for 2 weeks after that... but was on antibiotics prior to going gluten free, so I think I will do it again.

782d92f4127823bdfb2ddfcbcf961d0e

(5231)

on November 11, 2012
at 06:36 PM

And I don't think that it always necessary to spend money on a test, which may not be accurate or conclusive, just to get a diagnosis. I know that gluten causes problems for me and so I avoid it. Problem solved.

782d92f4127823bdfb2ddfcbcf961d0e

(5231)

on November 11, 2012
at 06:31 PM

I certainly hope that you are not telling me that I'm part of the problem. I stopped gluten and a lot of symptoms I was experiencing also cleared up. Coincidence? I think not. But now that I've been off gluten for about a year I can't really get tested and expect it to be accurate. So, I'm assuming that I am intolerant and going with what works for me. And I don't think that I am a celiac, just very sensitive.

32f5749fa6cf7adbeb0b0b031ba82b46

(41757)

on November 11, 2012
at 05:20 PM

I'd guess this doc is sick of WebMD self-diagnosed celiacs. I think the self-diagnosed gluten/wheat-intolerant probably do a disservice to folks to really are intolerant/celiac.

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4 Answers

2
245cbe47a4a092c07f494233c4c28a5c

(269)

on December 24, 2012
at 10:51 AM

I got the frustrating IBS diagnosis too... but my questions is, why does it matter if you are "officially" diagnosed or not? It's your choice to stop eating gluten. If you stop and you feel better, hooray, if you stop and you don't feel better, it's something else.

It can be REALLY frustrating when you think something is wrong with you and your doctor isn't sympathetic, but something like this doesn't require their input. There isn't medication for it, so there is no way they can really make your life better even with the correct diagnosis.

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on January 06, 2013
at 05:24 PM

that's the things, I still feel very well eating gluten, but all this paleo info is getting me confused and I want to make better decisions for my health and wellbeing. If they are proven to be true, much easier for me not to cheat :)

245cbe47a4a092c07f494233c4c28a5c

(269)

on January 10, 2013
at 09:33 AM

Ally, why are you stressing about what's "right" if you feel good? This seems unnecessary. If you are fortunate enough to feel well and feel healthy, then you probably are. There is very little "truth" or "proof" to nutrition science, unfortunately, because so much of it is propagandist or just plain bad science. The best test is how you feel on a daily basis. Learn to listen to your body and then trust what it is telling you.

0
3720f5eb63757f8cdbf393ac7530c1c3

(259)

on November 11, 2012
at 09:54 PM

My GP gave me tests for it with no problems when I asked for them - the results came back showing that I had no sensitivity or intolerance. I decided to cut out gluten anyway though (this was shortly before I discovered paleo!) and within a few days I felt a million times better than I had in years!

Placebo effect? Maybe! But if I'm no longer exhausted all the time, and without any joint pains, then I don't really care so long as I stay this way!

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on November 12, 2012
at 01:00 PM

isn't the problem that they test for one protein, when in fact you can be sensitive to any of them in the gluten molecule?

0
F5a0ddffcf9ef5beca864050f090a790

(15515)

on November 11, 2012
at 07:01 PM

Oops... I am not in UK. Is it okay to answer anyway?

The short answer: no. Basically I gave up on traditional medicine because nobody knows anything.

The long answer: gluten sensitivity is a symptom, it is not a diagnosis. In fact, gluten sensitivity can be treated.

It is an inflammatory disorder, and just removing gluten from your system is not going to work. You need to address 1. gut dysbiosis 2. overall inflammatory response.

There are tests for gluten sensitivity. The most reliable is genetic testing. Blood work is only accurate in about 40%, so I would not even bother doing it. One of my gastroenterologists did not even know that the test is not valid when you do not consume gluten for three months.

Here are some links, but when you read about them, make sure you understand: gluten sensitivity is a sign of a more serious issue. Even the link I have provided does not tell you that. Town Center Wellness

So you can spend your hard-earned money to find out that you do have a gene responsible for gluten sensitivity. It is not going to help you because even if you carry this gene, you may or may not develop gluten sensitivity. The more reasonable test would be to abstain from gluten for a whole month and then load up on foods with wheat. If you have gluten sensitivity, you will know right away.

However, whether or not you have gluten sensitivity is irrelevant till you address the underlying issues. You might have SIBO AND inflammatory disorder. What is the answer? A grain-free sugar-free starch-free anti-immune low-carb traditional/Paleo diet, a treatment for SIBO (sometimes it involves antibiotics), etc. because it works for ALL inflammatory diseases.

How many doctors, do you think, know about that? Not that many.

Hope my answer makes sense.

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on November 12, 2012
at 12:58 PM

I did the gluten free thing for 20 days and on the 21 day it was my bday so had birthday cake. I had diarrhoea for 2 weeks after that... but was on antibiotics prior to going gluten free, so I think I will do it again.

A8dc0864e48ea2e8368b7a93f06dd850

(115)

on November 12, 2012
at 01:00 PM

also I had a chat with Diane Sanfilippo about going gluten free for elimination diet, and she said it's needs to be grain free and for longer than 4 weeks to see real results.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on November 12, 2012
at 03:33 PM

You are right. Grain-free, lactose-free and eggs-free. I forgot. Source: Terry Wahls.

0
782d92f4127823bdfb2ddfcbcf961d0e

on November 11, 2012
at 04:44 PM

I think that you need to see another health care provider...this one clearly doesn't know what he's talking about! Gluten sensitivity and intolerance can cause IBS-like symptoms but I know when I've been glutened by other side-effects that occur, such as rashes and migraines. Here is a link decribing tests for sensitivity. Sorry, I'm in the U.S. and don't know what's available in England. Good luck!

782d92f4127823bdfb2ddfcbcf961d0e

(5231)

on November 11, 2012
at 06:31 PM

I certainly hope that you are not telling me that I'm part of the problem. I stopped gluten and a lot of symptoms I was experiencing also cleared up. Coincidence? I think not. But now that I've been off gluten for about a year I can't really get tested and expect it to be accurate. So, I'm assuming that I am intolerant and going with what works for me. And I don't think that I am a celiac, just very sensitive.

782d92f4127823bdfb2ddfcbcf961d0e

(5231)

on November 11, 2012
at 06:36 PM

And I don't think that it always necessary to spend money on a test, which may not be accurate or conclusive, just to get a diagnosis. I know that gluten causes problems for me and so I avoid it. Problem solved.

32f5749fa6cf7adbeb0b0b031ba82b46

(41757)

on November 11, 2012
at 05:20 PM

I'd guess this doc is sick of WebMD self-diagnosed celiacs. I think the self-diagnosed gluten/wheat-intolerant probably do a disservice to folks to really are intolerant/celiac.

245cbe47a4a092c07f494233c4c28a5c

(269)

on December 24, 2012
at 10:52 AM

I agree with you, MiMintzer. Upvoted and elaborated in my own answer.

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