Having gone through all the skin prick tests, and now on an elimination diet, I have found that my severe sinus problems returned when wheat was introduced.
It seems everyone here has gut problems, but where can I get help for SINUS problems caused by wheat
Sorry your post is a bit confusing, what kind of specific help do you want?
Hi susie43, while you may only have sinus symptoms at the moment, if my experience is anything to go by your wheat intolerance will lead to skin and digetive problems in time if you don't avoid wheat. Your sinus symptoms are indicating that your whole system does not tolerate wheat.
I have found that my symptoms (sinus, skin and digestion) resolve when I don't eat wheat. So I can eat other grains in moderation, barley, rye (in moderation), oats, etc. It may be useful, if you have not already done so, to check if you can also eat these grains as life becomes a lot easier than if you are gluten intolerant.
As wheat is so high in gluten this site is useful to find out about gluten free foods (which are guaranteed to also be wheat free). So I often eat 'gluten free' menu for example when out in restaurants.
Legal wheat derivatives used in foods can be found at commission directive 2007/68/EC Annex IIIa also European Food Standard Agency by putting gluten in the search box. Hope this helps with your avoidance programme.
Hi Susie, in terms of treatment it makes no difference at the end of the day whether your expression of the symptoms is sinus, gut or elsewhere. All you can do is eliminate wheat from your diet.
Your post is confusing but I assume from the way you phrased it that skin prick tests came back negative? If so you don't have a wheat allergy and it probably IS gluten that is the problem.
Don't imagine that if you don't have gut symptoms it isn't gluten. Coeliac and non coeliac gluten sensitivity (NCGS) are not diseases of the digestive system, they are immune system diseases and you could be doing invisible, unfelt damage to your gut, brain and nerves without knowing.
Hi Susie,
DartmoorGuerrilla is absolutely right, you are probably gluten sensitive. You need to get your head around this quite complex condition. Dr tom O'Bryan at TheDr.com is helpful. Good luck.
Hi Susie, there is a growing awareness of non coeliac gluten intolerance, which can have an enormous number of symptoms. There is no definitive test for it other than excluding gluten and seeing if you get better. Check carefully to see if your symptoms resolve if you just avoid wheat or if you also need to exclude rye, barley and oats. It makes life easier the fewer things you have to avoid. Beyond that any of the advice for coeliacs is likely to be helpful for you too. I listened to some of the Gluten Summit in the internet this week, seems like ncgs people react faster and to smaller amounts of gluten so to avoid symptoms you will have to be careful.
Simple answer, be glad you have found something you can do that makes you feel better. good luck and good health,
Thanks all of you for helpful replies. I will continue to research along all the lines mentioned.
I do appreciate all your advice.
You might want to eliminate diary for a while, stay gluten free
Sinus pain is one of my signs that I have been Glutened(as well as others) it last a couple of days. I am properly GF and don't usually get sinus pain otherwise, even with a headcold.
I suffered for years - in sometimes agonising sinus pain, wheat was never considered until one day I realised it had gone.
I have been GF 5 years.
You can't separate a Wheat intolerance from Gluten - they are both the same really.
hi Susie
I dont get gut symptoms - my symptoms are neurological but when I was ill before being diagnosed I had a severe sinus infection. Are you saying you have not been diagnosed with a gluten sensitivity but a wheat allergy? You will find that there are few foods that contain gluten but no wheat and these will be the ones that contain barley or rye gluten but these are so few and far between that in terms of the diet you just avoid gluten. Your post didnt really make clear what you need but it sounds like you might be looking for other places on the web that you would find helpful? one site is trulyglutenfree.co.uk which is about gluten but is very useful. Ive found that coeliac UK has some useful info but I dont think they are strict enough for us with gluten ataxia or other neurological gluten illnesses and if you are wheat free this might be the same for you too
Gill
Thanks for that link.
My Dietician said I couldnt be Gluten intolerant as my gut was ok, but after the elimination diet , my first "challenge" was preservative free (wheat) bread, and my sinusitis returned with a horrible bout of nasal blockage , coughing etc. I am not due to see her again until January, so I am trying to do some research of my own.
Through other links I have found that my Fibromyalgia could be linked to it too. So I am compiling quite a file on possible causes, solutions, tests etc.It would seem that all this is fairly new stuff so maybe I can excuse my dietician for not being up to date. But come January I could be changing to another !!
Someone last week posted this you tube video, it is quite long but explains the effect of Gluten on the body. He explains how Gluten sensitivity will affect the area if the body which is weak whether that be sinuses, brain, lungs, joints etc.
I have a friend diagnosed Coeliac with Biopsy who has no gut symptoms at all, just loads of other stuff.
unfortunately your dietician is giving you duff information! My gut is fine but I have been diagnosed with a gluten ataxia from a non coeliac gluten sensitivity - its very old school thinking to think that coeliac is the only gluten illness! My guess is that gluten is your problem not just wheat. You need to see someone who knows what they are talking about! Most doctors also think coeliac is the only gluten illness - where are you in the world so we can try to suggest someone for you to see?
Re the fibromyalgia - yes this can be linked - the gluten can also damage the thyroid and an underactive thyroid can cause fibromyalgia - I was diagnosed with this but once my thyroid was treated the fibro went, since gluten free my thyroid is nearly normal and I am only taking a teeny dose of levothyroxine.
having a test for gliadin antibodies will diagnose you but there are other tests out there too, but the standard ones for coeliac wont do it - Im not coeliac and on the usual GP tests then they would say I dont have a gluten sensitivity but fortunately I was sent to a neuro who understands and found that I have antibodies to gluten (well to gliadin which is part of the protein in gluten). on the thyroid bit then my results were also normal supposedly but i got to see an endo who diagnosed me - the gluten antibodies can cross react and think your thyroid is gluten and attack that too! complex stuff - gluten free society in USA is a good site too
Gill
Same here - re thyroid
I wish this forum/info was available when all symptoms first started!
I am in a back water of Australia; The southern island of Tasmania. I even had to travel to the other end of the island (3HOURS) to see an allergist for the skin prick test. I could fly to Melbourne on the mainland (state of Victoria) if there is anyone there who specializes in this area. Thanks so much fo what you are doing... your interest.
hi Susie - I dont know of anyone in Australia but lets see if anyone else knows of someone. My neuro in UK does see people from abroad but as he's in UK that's a long way! He will however correspond with specialists elsewhere in the world. I think the way for you to go is to learn as much as you can yourself and then you will know what tests to ask for.
What tests have you had so far and what symptoms?
Gill
I have lived with sinusitis all my life, just put up with it, nightly dose of benadryl, or whatever to ease the congestion.
Then my partner of 7 years said I should do something about it. So I went via the gp to and ENT who did a CT scan and said I had inflamed sinuses but that was all and salt water lavage would fix it. It did for 3 hours. But an anti histamine worked for 24, so I suspected an allergy
Then I asked the GP to refer me to an allergist. There isnt one here,but I travelled north to visit one who did all the skin prick tests and 2 blood tests for mould and dust mite. All neg. Then refered to dietatician in home town. Elimination diet for over 2 weeks saw symtoms go completely, but the first intro of wheat and they were all back.
No one (medics) even considered that my Chronic Fatigue and Fibromyalgia could have anything to do with all this, as I've only had those since 1990, and the sinus ? well at least since I was in my 20's. I am now 70.
But now with the help of links given here, I am beginning to see a bigger picture , and I am very optomistic.
Hi Susie,
I have been reading your post and wondered if you had seen the information on Doctor Myhills website (drmyhill.co.uk). She began work as a doctor treating allergy and intolerance but also treats people with ME/CFS. She links intolerance to the symptoms of ME/CFS and gives advice as how to help. She talks about something called fermenting gut (which I have been diagnosed as having) and there are some foods with this that can cause gut problems. The principle is that the gut ferments food rather than digesting, this causes alcohol which causes 'hangover symptoms'. She also talks about dairy intolerance. She had done extensive research that shows that dairy is a problem for many people, but doctors seem only to be focused on 'lactose'. So you may be dairy intolerant - milk is in so many things! I have suffered major sinus problems for years and when I went to doctor Myhill I asked if she thought I had rhinitis but after going through my symptom she suggested a dairy intolerance. Ive since cut out dairy and it's made a massive improvement. I used to have oils for sniffing, tissues for blowing my nose and would get frustrated with the bunged feeling in my head and then the runny nose that would occured (even though I felt bunged up!). I have not had to blow my nose half as much, I feel lighter and my head feels comfortable. That may sound daft but normally I would feel like my head would explode. I hope this help- take a look at the link, it might help. Emma xx
Dr Rodney Ford is in Australia, I think. I don't know if this will be of any help.
Suzie, I too am 70 and struggling, but with full blown coeliac disease. My doctor and dietician simply said go on a gluten-free diet and you will be fine. But this week, listening to the gluten summit, I learned so much more. If you can get hold of a copy, do buy 'Wheat Belly' by Dr Davis. This is a remarkable book and will tell you lots about your wheat allergy, why it happens, what diseases wheat is linked to, and how you should eat. I discovered that gluten-free products are not good for you and am in the process of changing my diet - a hard job at our age! Lots of luck, Gillian
I have come across an article "GLUTEN MAY NOT BE THE CULPRIT IN NCGS"
It was on the Celiac Disease.about.com website, article byJane Anderson, Sept 9 2013. It certainly throws new light on the wheat/gluten allergy problem I have. Hope it helps others.
Love this!
Not diagnosed but been gluten free for 2 months
How did you find out you had a gluten intolerance?
Supermarket foods not labelled as gluten free but no gluten in ingredients list - are they ok?
Not diagnosed as coeliac but feel as if I am!
"Gluten Free" .... how wrong could I be?
