Sticky Blood-Hughes Syndrome Support
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IBS and Fatigue (my theory that works)

Hi, I just wanted to share something with you – and would love your comments if you are already aware of this or wish to try it.

For years I have suffered various niggling problems, mainly fatigue and IBS. 12 months ago I had two slightly high blood tests which led the consultant to suspect I had a mild version (if there is one) of APS. I have been tested for everything these past 4 years both blood, MRI and a variety of other tests and was finally prescribed a baby asprin per day.

This didn’t help with the tiredness, however and in June this year I opted for a gluten free diet. Previously my GP has put my symptoms down to stress but for the past 5 years or so I have been monitoring what I eat that triggers the symptoms. Nailed it down to anything to do with Barley, Malt (fish and chips always crippled me and guess it was the vinegar), anything with modified maize starch in it (you would be surprised what they put that in) and within days of cutting out gluten altogether I noticed a vast difference with my IBS symptoms, well, I don’t have them anymore unless I slip up and think I’m ok and eat a biscuit or something. (I always knew it wasn’t stress related)!

The other issue I wanted to mention to you was fatigue. It’s a long story that runs over the last five years so I won’t go into it but after much research, trial and error, monitoring what I had used etc, I have now come to the conclusion that I have a reaction to Geraniol. This is extracted from certain plants, is not a true essential oil (chemical based) and is in the majority of skin care, shower gels, soaps, hairspray, suncream, perfume, you name it its in it. (google for more info)

I can honestly say I had one good day out of 5 where I felt alive, like my old self then I was back to dragging myself through the day. The fatigue was crippling. I wondered how I got through the day - you know whats its like. Not normal tiredness at all.

So I cut geraniol out of my life too. Takes a lot of reading labels with magnifying glass in most cases but it works. Sometimes I slip up and I know within 2 hours that I have used something that I shouldn’t as I just droop. I feel so tired and have to drag myself round till I can go to bed I (that’s after finding out the item that caused this). For example in summer out with friends my son needed sun cream. I didn’t have mine with me so borrowed my friends Clarins suncream. Within 2 hours I wondered what was wrong with me, we were on hols, relaxed happy etc, but I dragged myself round our day out and only realised when we returned to camp that I had used a different product. Guess what it contained?

You may think this is just slightly wacky, I have no scientific proof to support this only what my body tells me in the way it reacts to both gluten and geraniol.

I know many of us suffer with this crippling fatigue and I would love it if you would just consider what you are using on your body, monitor your tiredness if you cut these products out – how do you feel.

Please let me know what happens, if some similar product is affecting you etc. Please don’t go all natural and buy organic etc products, this can make it worse. Just cut them out, try something simpler, with less chemicals and essential oils and see how you go.

Sorry for the long blurb but I wanted to share this with you.

Good luck

12 Replies

This is very interesting, Missdaisy.

Best wishes.

Dave xx


Thank you for posting this. Prof Hughes always advocates that we should cut out Gluten. Celiac Disease is associated with Thyroid Disease which many of us with APS have and many people who have autoimmune conditions often find that by cutting out Gluten they will feel better.

I read an interesting article a few months back that talked about why people who had all the symptoms of Celiac Disease still tested negative for the disease and now get dx with this new classification of Non Celiac Gluten Intolerance as in my case. I was surprised to learn that in actual fact there are up to five different proteins that we can be sensitive to but they only test for the common ones. So in actual fact you could have the disease but once again its the tests failing the patients not the patients failing the tests!

Im lucky in that both my Immunologist and GP treat me as if I do have the disease and I certainly know about it if I eat any Gluten! What is worrying is the damage that can be caused if Gluten is continued to be ingested with undiagnosed Celiac Disease therefore I do advise people with Thyroid, APS or any autoimmune condition to cut it out if they possible can.

1 like

My health Improved dramatically when I went gluten free. In fact, within 6 months all of my rheumatoid factors. Went from severely.( IGG) to moderately (IgM) elevated to normal. ( which is an issue now because all that blood work has been thrown away and now I have nothing that documents my diagnosis to my new hematologist.)

I will google that geraniol. I never wear make up and confine my cosmetic use to soap, shampoo and hand lotion. I always suspected that avoiding all those heavily marketed products was a good thing. Maybe my subconscious was trying to tell me something?



This is great to hear. Can't believe we all suffer for so long when simple changes to diet and health make such a difference.

I would recommend gluten free to anyone. I don't feel I do without as I prefer savoury foods over sweet but with so many products available now it's easy to switch with an added bonus of losing weight too and no bloating.

Check those ingredients in your body care products. Let me no how you get on.

Take care. X


Hi, I had a look for you, it is a known allergen through your skin if you are allergic would cause you a problem.. here are some articles: and

And as for gluten free, most people with autoimmune disease appear to benefit from this. I gave it up 16 months ago and will never go back,. the odd times I have been glutened by mistake I have felt awful. It is possible to have fully blown gluten intolerance without it showing up as the more serious form of Coeliac Disease:

Working out our personal triggers is best done by trial and error, keeping diaries etc.. So.. good for you. Mary F x


I have found it impossible to avoid these pathogens in food.

Of course there are also Chemicals leaking from plastic wrappings,the plastic lining of tin cans, plastic drinks bottles etc.

I alleviate my fatigue by taking 3 neprinol capsules and 2 80,000 iu serrapeptase with a glass of water each morning.

I stave off IBS with bifidus infantis

35624(a standard medical treatment for IBS)


Sporty - Wasn't aware that people ate plastic wrappings, linings of tin cans, drink bottles etc :-D

Had you listened to the Gluten Summit a couple of weeks ago where the worlds leading experts in this subject (Gastroenterologists, Neurologists, Cardiologists, Paediatrician's) came together to share the latest research, you would have heard that IBS is most certainly a manifestation of Gluten intolerance and you should therefore refrain from eating it especially if you also have APS and other autoimmune conditions. Your fatigue is also probably more to do with Gluten.

They also suggest high doses of Vit D along with a good broad based probiotic ( yours is a little narrow). If your IBS continues its because your gut is not healing and you may have cross contamination or other food allergies, dairy intolerance or a nickel allergy which apparently can be brought on by people who switch to eating more corn based products after giving up gluten.

It would also seem to me that Neprinol could also be the source of your fatigue, can increase blood clotting, can cause headaches and can also cause stomach symptoms sneakily suspicious of IBS. It certainly does not sound like something you should be taking!

You are probably also wasting your money on the Serrapeptase as the dose you are taking is way over the top and from this link there is no clinical evidence that it is doing anything for you unless you have a stuffy nose!!

Id stick to conventional medicine for APS if I were you! :-)


I hope you are not a doctor because you have your facts muddled up.

The chemicals from plastics leach into food.

Most conferences like this produce drivel.

Intelligent doctors have told me they believe most drugs do not work or have serious side effects and are withdrawn eventually.

Medical advice fluctuates from month to month and is highly contradictory.

Everthing I take works for sound scientific reasons and work in practice.

**************EDITED BY ADMIN PLEASE READ RULES 9 and 10*************************


Now Im trying not to laugh!


I stated that the neprinol and serrapeptase alleviated my fatigue.

But you twist this by saying it causes my fatigue?

No neprinol and serrapetase taken at this correct dose alleviate fatigue.

Probiotic bacteria fight each other so taking a broadband probiotic is counter productive.

Incidentally Bifidus Infantis is the only known probiotic which works that is why the NHS use it!

I would also like to know what this mythical broadband probiotic is called?

I do not suffer from fatigue now

Or IBS since taking the above.

I play golf 3 times a week now.

I stopped taking all the drugs and will probably outlive you.


Sporty, gluten free is well known to improve IBS, and gluten is well known to affect those with autoimmune disease. I am not sure if any of your extra intelligent doctors have written any papers on the supplements you take or indeed would agree that their well published and recognized colleagues were peddling drivel at medical conferences. There is a fine line between discussion about supplementation that may help and almost appearing to discount main stream drugs which are working for many people and in fact saving their lives. We can all share information on here, but sweeping claims on unproven alternative medication with no scientific backup is not the way to go. I take turmeric in the hope it will help with inflammation and also my skin in general, but although it may have an effect I would not start telling people to stop taking their Plaquenil and swap to it!! There are ways to be educated and to educate. Encouraging patients to not take their Warfarin or other similar medication is not the way forward. MaryF



Now I wonder; Have you been diagnosed APS? If so I guess your APS-doctor has told you to use some drug for anticoagulation. This illness is very severe and can effect every part of your body.

When I started warfarin 2 years ago I got my Life back!. Please do not tell someone here that the drugs you have been ordered by your APS-doctor are useless.

Kerstin in Stockholm


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