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The UKFibromyalgia Forums • View topic - None Celiac Gluten Sensitivity



None Celiac Gluten Sensitivity

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None Celiac Gluten Sensitivity

Postby fredfred » Wed May 28, 2014 3:04 pm

I had all these symptoms: brain fog, tiredness, headaches, depression, joint pain, muscle pain and colitis (IBS) and was eventually diagnosed with FM.

Then I found out that celiac disease has the same symptoms. I had a blood test but I passed it, however, I tried out a gluten free diet anyway and three weeks later all my symptoms cleared up.

I don’t have FM after all. I have what is called None Celiac Gluten Sensitivity which has the same symptoms and the same cause (gluten) as celiac but it is not an allergic reaction and cannot be tested for. The only way to diagnose it is with a gluten challenge. The good news is that, like with celiac, a gluten free diet gets rid of the symptoms. NCGS has only been recognised in the last three years so your doctor may not be aware of it and I would recommend everyone with FM to try a gluten free diet for a month. Most Celiac websites have a section on NCGS and there is plenty of advice on what not to eat.

It’s a pain having NCGS but trust me, it's a hell of a lot better than FM.
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Re: None Celiac Gluten Sensitivity

Postby FluppyPuffy » Wed May 28, 2014 3:29 pm

Thank you for telling us about this, it's very interesting, and certainly makes you wonder just how many people there are suffering with NCGS which have been dx'd with other conditions that share the same kind of symptoms. For some it could make all the difference to them.

On here there have been a few who have tried a gluten~free diet. For a few it helped make a difference to how they felt. For others tho, there was very little, or no improvement in symptoms, and how they felt.

If anyone thinks they may have possible coeliac issues, the first step is to go and talk to a GP and see what they think/suggest. Coeliac UK do urge anyone who thinks they may have such problems as NOT recommend starting a gluten~free diet as a first option if symptoms are being experienced. Continuing to eat gluten is what they suggest should be done initially, as well as seeing a GP as quickly as possible for any necessary tests to be carried out. For the tests to show as accurate results as possible, this continuation of eating gluten is necessary.


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Re: None Celiac Gluten Sensitivity

Postby zaininayah » Wed May 28, 2014 5:21 pm

Fred Fred. That's exactly what I've been told only a week ago.
I had a biopsy aswell. It's only been a few days I'm still in pain.
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Re: None Celiac Gluten Sensitivity

Postby fredfred » Wed May 28, 2014 9:10 pm

zaininayah, It took me three weeks to see any benefit and my symptoms actually got worse during that time. Three weeks to the day, I got up and felt okay. You just have to tough it out.

Another thing, weird though it seems, you get cravings for things your allergic too so you will probably feel hungry a lot more than usual as your body will be missing the gluten. Stick with it, it's only 3 weeks.

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Re: None Celiac Gluten Sensitivity

Postby dotty lotty » Thu May 29, 2014 12:01 pm

Been on a gluten free diet for 20 years for coeliac and had fibro 2-3 years and it does nothing for my symptoms :teddy-bear:
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Re: None Celiac Gluten Sensitivity

Postby SchroedingersCat » Thu May 29, 2014 12:03 pm

I'm afraid I too tried gluten free- 6-8 weeks in total, made absolutely no difference whatsoever. I now keep wheat low in my diet as much as I can just because general opinion seems to be too much isn't good for you, but still no difference in my FM.
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Re: None Celiac Gluten Sensitivity

Postby fredfred » Thu May 29, 2014 1:02 pm

@dotty lotty + SchroedingersCat: Sorry it didn't work for you guys and I'm sure there will be lots of people that a gluten free diet wont help. However, I'm equally sure that there will be more people like me who have been wrongly diagnosed. During the ten years I suffered with FM and colitis, I saw five doctors and nine specialists and not one of them made the connection with gluten.

As fluffy puppy says, you should talk to your doctor first, they will arrange a blood test which takes 3-4 weeks on the NHS. I couldn't wait and bought a DIY test kit from amazon (£20) and found out I wasn't celiac within 24 hours. I then started my gluten fast. Three weeks later my symptoms cleared up. I then pigged out on gluten and two days later I was all crocked up again.

I know this is not the answer for everyone but I am living proof that is is for some. Believe me, it's worth checking out.
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Re: None Celiac Gluten Sensitivity

Postby HazelB » Thu May 29, 2014 10:53 pm

I agree that there are probably others who have been mis-diagnosed with FM in this situation. I'm gluten free, but it doesn't improve my fibro any just my IBS.

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Re: None Celiac Gluten Sensitivity

Postby denys » Thu May 29, 2014 11:40 pm

Great to hear it cleared things up for you Fredfred and thanks for letting us know if it helps even just one member it will be great and as has been said may help many more :-D :-D :-D :-D
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