Hello,
I have been suffering for the past 9 years (I was completely fine until i was 21) and no doctors can seem to help me. I would be very grateful if anyone could offer me any help or suggestions.
My symptoms include:
+ pressure / twitching / movement in face, head, nose
+ irritability
+ rashes on hands
+ chest pain
+ extreme fatigue
+ digestive discomfort
Fortunately I am able to control my symptoms by sticking to a liimited set of foods:
+ chicken breasts
+ rice
+ soya mil
+ oats
Anything else will usually trigger my symptoms. By sticking to these foods I am able to feel relatively happy. It is not just foods that are triggers:
+ toothpastes
+ mouthwashes
+ hand creams
+ shampoo
+ shower gel
I have noticed with foods and supplements that anything containing a certain amount of calcium will instantly trigger my symptoms. But also foods without calcium. By comparing foods, it looks like possibly Vitamin A, D, E, K.
Though there are thresholds. For example. mineral water contains calcium, and I can drink 2 litres a day without problem. but a few grains of sea salt and I'm in all kinds of discomfort.
I have so many stories, signs and other symptoms but I'll leave it here for now. If anyone has anything to say or know someone with similar symptoms please let me know. You may be able to provide life-changing help.
You're welcome to think it's "all in my head" just like I'm welcome to completely ignore you.
Hi Jim
i would really like to help!
The first thing i wish to say is how very impressed i am with your managment of this condition. you seem to have really got a handle on it and you are very perceptive.
My strong impression is that this is a magnesium deficiency. Do you think this is a a possibilty? Magnesium is an antagonist to calcium which may explain some of your reactions?
I really hope this helps ....especially as its so easy to replenish magnesium. I am keeping my fingers crossed for you.
very best wishes marey.
We have to know tests results. WIthout them we can just guess blindly.
+ surgery on sinus twice due to persistent sinus infection - assumed to still be infected as symptoms are the same
+ Test for hyperparathyroidism fine
+ Vitamin D deficiency (23 nmol)
+ Mast Cell disorder tests came back fine
+ Tested for allergies - none could be found at all
+ Tested for coeliac don't have that
+ General blood tests were fine (wasn't given actual results)
thanks. I have some pure magnesium and will be trying it out later.
At the beginning I thought about coeliac disease and infection. According to the tests, second option is still possible.
Vitamin D deficiency explains most of the sympthoms. It is needed for calcium and phosphorus absorption. If you do not have enough D, it may also lead to infection, because your immune system does not work properly.
Yeah, I did think infection may be possible but an infectious disease specialist said he completely disagreed and I should stop looking for the cause of my problems and get treated with CBT.
It's reliable option, unless you do not have proper vitamin D level.
And now my doctor is turning me away saying they are not prepared to help any more because the chance of finding something after this long is unlikely.
So what do I do now? Jump off a bridge?
No Jim ...no jumping from anywhere...it won't help!
how are you getting on with the magnesium trial? You want to take as much as you can...there are no side effects...you just get a great bowel movement! You want to aim for that happening then a small adjustment and you will have found the level you need. Yes VIt D too ...potential for toxicity is not reached until excess of 250 nmol/L.
Take magnesium orally...as much as you can...and get some epsom salts....i've got to get some too...so let me know if you find a good source!
best wishes marey
you bathe in the epsom salts 3 or 4 times a week...then you absorb the magnesium naturally! Brilliant.
No!
You will probably have bowel inflammation but it doesn't show up as coeliac until you have the condition full blown...you don't want to wait til then....but can start NOW addressing bowel inflammation. Turmeric is specific for that.
Don't rely on medical doctors... their knowledge is very limited and they have no training in nutrition. Test results can help but you have to nag. Try writing in advance with your requests and get organised about all the tests you think you may need..
Be aware of your approach if its all too much you may not be taken seriously. Just focus on the test results you would like...make a list and go into a new surgery with them....but simultaneously have a go at your own research.
Am I making sense Jim?
Look you've got two people backing you up....!! Isn't that nice.
YeY Yey...go JIm!!!!!!!!!!!!!!!!!!
Love marey x
Actually your vit D is way insufficient.
below 30nmol/L is insufficient for anyone
30 - 50 nmol/L is inadequate in some
over 50nmol/L is sufficient
> 250 nmol/L has potential for toxicity
so you have quite a long way to go to boost your vit D. Take the maximum dose for a week and i'm guessing your magnesium too. Its really important to take a natural form of vit D. Pharma Nord from health food stores do a good one...its tiny as well...which is a bonus.
Well done for getting those results jim. You have your answer...low vit D can also cause depression....so you've got to get along to a quality independent health food store and fetch that vit d then report back when you've done so!!
OK?
So here are some things that I have learned over the past month or so. If there's anything that seems even 1% likely please let me know - I'm so desperate now.
1. Steam inhalation helps
I have a facial sauna that comes with a nasal kit. This is really helpful. Firstly it takes the edge of my irritability and secondly it actually helps me to recover quicker. It even triggers bowel movements that give me relief from symptoms
2. Magnesium does not help
I'm grateful for the suggestion, but after supplementation and magnesium baths, I can definitely say those forms of magnesium make my symptoms worse.
3. My skin tastes like salt
My girlfriend told me this which I notice is a system of cystic fibrosis. With my myriad of symptoms that seems likely. My doctor said it was possible but the possibility was so small she refused to test for it (I'm currently writing a complaint to the NHS about this).
4. Vitamin E also triggers my symptoms.
A small amount of Vitamin E gives me immediate relief from symptoms - just like calcium. But after a few days of eating foods with Vitamin E - oils, spreads, peanut butter, I feel so tired all the time and I have music continually running through my head.
5. Vitamin A is a trigger
I've thought this for a long time but I tried it again recently by eating my limited diet for a couple of weeks and then trying peas. After two meals that included peas the tiredness and pressure feeling in my face came back.
Where do I go from here? So many symptoms. So few foods that I can eat. Doctors are telling me I'm not even welcome to go back.
I literally need a miracle.
I just don't understand why vitamins and minerals are making me feel bad - and lots of them not just one. What could be happening inside my body to cause fatigue, irritability, digestive issues by consuming foods that contain vitamins and minerals.
Someone must have an idea.
Also, does anyone have any idea how I can brush my teeth without absorbing any of the toothpaste? I've tried all kinds of toothpaste from commercial brands to natural alternatives but they all cause some worsening of symptoms.
I try to use the tiniest amount possible and rinse my mouth afterwards. Is there anythign else I can do?