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Gluten Free Guerrillas
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hello everyone! I joined this forum because I am tired of being so tired! I am celiac and have been on a very strict gluten free diet for the past 5 years now. I recently had a gluten sensitivity test that came back negative, so I know I am not having any hidden gluten. I have had every blood test related to deficiencies (ie. ferritin, thyroid, etc) and nothing has come back as positive. My doctor told me my tiredness is most likely related to my CD. I have even gotten a SAD lamp and nothing is helping! It feels painful to be awake :( Does anyone have any advice on anything that has helped with energy? I am so tired, exercise is difficult and I know that is the best help. Is anyone else exhausted? I am only 29 and I am so sick of feeling like an old lady! I need help. It is so depressing and isolating feeling so exhausted all the time.

16 Replies

Hi merrisferris

Sorry to hear about your exhaustion. Not the most helpful comment from your doctor!

Have you tried any supplements? Magnesium, zinc and vitamin D may be helpful (but don't overdo the magnesium!).

Are you on a weight losss diet? I have not experienced the kind of tiredness you are talking about, but my energy levels and general health improved when I gave up the low fat diet and gave up sugar (in processed food).

I hope you will get some more helpful advice! Good luck.


Thank you so much for your help :) I read a previous post you wrote about xanthan gum allergy. What kind of symptoms did it give you? And i will def try the vitamin recommendations :)


Xanthan gum gives me extreme diarrhea within a few hours of eating and even a very small amount will do it. It's not as bad as being glutened - no brain fog or pain. The reaction has got more extreme with repeat (accidental!) exposures.

I'm pleased to see other people have come up with information for you!

I hope you can get your energy restored soon.


hi! what kind of things in Xanthan gum most commonly in? I know it is added to a lot of gluten free flours! I really wanna try cutting it out!


Xanthan gum seems to crop up in lots of ready made breads, pastry and cakes, ice cream, salad dressings, some low fat products. I'm finding it in new things all the time.

I have to read labels twice over!

Wikipedia has a good article about xanthan gum. en.wikipedia.org/wiki/Xanth...

I don't know whether i'm allergic to it or just sensitive to it.

Individual gluten free flours are OK, I make my own cakes and pastry. I don't use any gums, so things may be a little crumbly.


Has anyone ever suggested chronic fatigue or encephalomyelitis (ME)? I have fybromyalgia and hypothyroidism, as well as gluten intollerance... I have suffered from fatigue for years.


Hello - I am sorry to hear about your chronic tiredness. I was not as bad as you but I felt as though I was walking through treacle. My Consultant sent me for an iron transfusion which took about 2 weeks to hit! But when it did - brilliant. I wish I had had it done a long time ago. Keep persisting with your doctor - I had to print out a whole raft of stuff for my GP about CD and DH! Good luck! x


Did they test your B12? I've got a chronic B12 deficiency (pernicious anaemia) and my main symptom was tiredness - and it continued even when my B12 levels were back to a reasonable level. The only thing that sorted it out was going gluten free (though I tested negative for coeliac), but if I get glutened the main way I know is that I slow right down and have to go back to bed!


Sounds like chronic fatigue. I suffer this following a flu one winter. Whatever the cause there are plans that can manage these symptoms. Eat regular 4 hourly. Avoid stress and dont give time to negative people. Learn to power nap. Try a gentle yoga class or dvd. Eat quality foods such as nuts forget the calories they sustain you better than crisps etc.make time for relaxing and learn to say no to others when youvare tired.


I would suggested asking for a Thyroid test. I was in a similar situation some years ago and discovered I had an over active Thyroid (with symptoms for an under active one). I have been told there are recognised links between the two.


Hi Merris,

Don't be so tough on yourself sounds like your on track but just have a few bumps to sort out - one of the biggest hurdles with gluten free is accepting it ad you've at least done that!

If I was you i'd keep a very detailed food diary - sounds like a pain I know but once you're in the habit of taking wee notes you'll be fine.

This helped me since I wasn't getting better on my gluten free diet..

I found out a whole load of things were depleting my system and making me exhausted.

I had to cut out a few more things like coffee, chocolate, sugar, starches.

I think our poor wee systems are so weakened we can get blown over by lots of wee things unfortunately. I also started to feel a bit better with more energy after taking VitB12 spray and Vit D3 liquid version. IT took a few months to kick in mind you.

Try looking into what's going on in your gut - you may have over active candida and even a bit of gut dysbiosis - you can correct this by haing a simple sugar free diet and adding in nice fermented things but gradually, since your gut might be very sensitive just now.

Maybe take some time out and try to take your mind off of your illness since worrying will tire you out also. If you can do a small but enjoyable activity do it.

Be kind to yourseld and take some time out for you!

Winter is for hibernation and soup making!

I hope you feel better soon.

PS, watch those GF supermarket products they are full of sugar and other nasties...


Thanks Laura! I never thought of candida before, but I did suffer it as a child! I will look for liquid b12 and d! I really appreciate your advice!


Hi there, I am 23 and suffer from the same problems, even since going GF 9 months ago. I have seen a nutritionist who thinks I have candida, and I also have adrenal fatigue. Maybe have a look into these and see if your symptoms match.


Hi Merris,

Laura 78 is bang on with pretty much everything I would have said to you!

I cannot stress how important it is to keep a food diary. I do this with my clients as the very first step in healing from chronic fatigue conditions, whether it's from CD or any other cause.

But a food diary is only powerful if you know what you're looking for - what may be contributing to your fatigue.

I DID feel the same as you, for about 5 years, until more learning and training really filled the knowledge gaps and helped me see that my 'gluten free' diet was simply not enough for optimum health. you CAN get back to that place, trust someone who has been there!

The other issue that many of my clients have is hormonal forms of contraception. A very dangerous contributor to the fatigue spectrum and yet doctors are just as dismissive of this as gluten issues.

I hope that helps. Keep going! You CAN get there!

Andrea x


Don't worry you are not the only one, I feel exactly the same! I was diagnosed 12 years ago (I'm now 24) and had a good couple of years but gradually started to feel tired again. I have recently had another endoscopy to see if I am accidently eating gluten but it came back fine, I have also had all my bloods done which came back fine, although my iron was borderline. I can't remember what it feels like to not be tired and exhausted! It has got to the point now where I don't want to go back to my GP because I have been so many times over the years but I feel like my tiredness is starting to limit and control my life.

Amy x


Thank you so much everyone for all your replies and advice! It feels so good to know there are other people in my same situation :)


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