I'm so weary of seeing blank faces in the medical profession, to be honest some I believe just don't care!
I can hardly eat.
A few days ago I have actually added to my existing list of 17 things I can't eat. Now I can't even eat rice! So 18 is the new number!
So what is it that bothers me so I hear you ask?
Its a simple enough question, but answering it is the difficult part!
Well I have the usual line up of culprits;
Wheat, gluten, British dairy, soya, (including soya fed dairy), all legumes I can possibly think of, even tiny green beans, lamb, beef, celery, fennel, book Choi, mustard, spirit vinegar etc... And now even rice!
I am Hashimotos thyroid.
I have Sjögrens... and maybe something else, nobody knows what?
Aggressive food intolerances apart, I sometimes can't even drink a glass of water when I wake! Sometimes my response will be measured in as short a space as 15 to 30 seconds. It's almost instant. The pain will feel as though I'm being cut in half with cheese wire. I can hardly breathe. I swell as if I'd just eaten gluten. The pain is completely disabling. It can last for up to 4 hours. A constant. I can almost feel as if I'm losing consciousness.
The after effects last days.
I have to starve myself. Even drinking water is dangerous!
Having seen the gastro specialist last week, just the anxiety of fearing I would not be listened to or taken seriously was enough to kill me in the lead up.... He has requested a CT scan of my abdomen. I have asked to have pancreas, gall bladder and liver checked in particular. Colonoscopy pre Christmas revealed nothing, but a healthy bowel - a huge relief.
Is there anybody out there who suffers with anything similar? Any clues? Any shared advice?
Thank-you.
Poppy the Cat
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Sorry to hear this, sure others will be along in due course with advice..... presumably you have gone through the whole allergy testing procedures as well as the appointment last week.
Hello my dear, thank-you for your quick reply. Your photo always looks so lovely and cheerful.In answer to your question with regard to allergy testing, no I have not completed any testing as such. My categoric inability to ingest any of the 18 things that torment me, is enough for me. The possibility to willfully 'poison' myself with gluten with the 6 weeks of pain and unwellness that would inevitably follow, would be enough to do away with me right now I'm feeling so very very bad. Quite frankly I'm at my wit's end.
I just don't know which way to turn.
Our new amalgamated GP surgery is such an unmitigated disaster... (the official reviews are horrendous. You never see the same Dr twice- some you'd never want to see even the once! When I mentioned my experiences, the Consultant understood perfectly, sadly).
I've got them all stumped.
One impudent consultant said 'nothing further could be done.... And I could be "managed!!!" Polite words fail me.
I've pretty much lost hope and all I'm left with is dread and the unknown to be honest.
As I said sorry I can’t help - disgusting healthy - probably something you don’t want to hear ! jinasc suggested other forums which I see you’ve done - hopefully get some answers there.
GP surgery sounds dreadful, but unfortunately not uncommon.
..and I seriously doubt “nothing can be done - just needs a bit of “outside the box” thinking - and a dollop of compassion would help!
I took a quick look at your profile, which does not have much information in it, in relation to your illnesses. I am assuming you do not have either PMR or GCA.
Have you ever checked out salicylic allergy/intolerance? Sulfite allergy/intolerance? Some people have both…regular docs are clueless, perhaps a dietician could ferret it out? Salicylic allergy can be genetic, or something that develops as the gut biomes go south. There are expensive food intolerance tests available that can detect if any of these bother you…insurance won’t pay. Just a thought though. Best wishes.
I have a couple of friends through the LupusUK forum who have GI dysfunction problems and they are at the stage of almost nothing by mouth and parenteral nutrition. Maybe they or some of the others there with digestion problems could make suggestions? One had a relatively acceptable journey getting the problems acknowledged - the other has had a nightmare but is finally being taken seriously.
Have you been checked for anti-C1q antibodies at the John Radcliffe or ever?
You say you don't have lupus, but you might have a lupus-like disease as I have, which is urticarial vasculitis syndrome. Don't know if you get rashes?
I don't have any of the usual lupus markers, or typical inflammatory markers such as raised ESR or CRP, but I do have this autoimmune antibody.
It's worth getting the antiC1q antibody test as can indicate vasculitis that can quite easily fly under the radar.
Hi,Just pulling this out of the air, have you tried a low histamine diet? When my GCA was raging I really simplified my diet because I felt like lots of things irritated my immune system. That was one diet I looked at because I do have a mold allergy.
I get reactions to a large number of foods. It started about 4 years ago. I kept a diary of food and reactions and eventually concluded it was high-histamine foods to blame. My rheumatologist said they see this a lot in autoimmune patients but didn't know what it was. It has been very difficult to get help but I have had phone appointments with Immunology who prescribed some things like montelukast which is a mast cell stabiliser. I'm much better on high doses of steroids as they also subdue the immune system. I have posted loads of information over the years including a long post with lots of internet links, and there are about a dozen of us in the same boat. Even water triggers me too, I can only tolerate Smart water or Evian or Pelegrino.
My daughter had similar food intolerance, bloating and pain. After a lot of investigations she discovered SIBO (small intestinal bacteria overgrowth) and had a test privately as the gastrointestinal consultant pooh poohed the idea. It was positive and through taking various gut improving supplements and gradually introducing foods into her diet she is getting better. I think you can now get the test on the NHS. Might be worth googling it to see if it is a match for you.
So sorry to hear you're having such a rough time with food intolerances. I can really sympathise, having been sensitive to one thing or another most of my life, although not to perhaps the same degree as you're experiencing. Sounds horrendous!I don't know if this link might be helpful: fedup.com.au
It's a network set up to provide information about elimination diets, food additives, etc that impact on people's health. It was originally aimed at kids, but is equally applicable to adults. As part of her ongoing research, Sue Dengate, the founder, has worked on an elimination diet in conjunction with the Royal Prince Alfred Hospital in Sydney and her books/website have helped many people sort out intolerance issues. You might perhaps see a pattern in their lists relating to the foods you're having trouble with?
Foods high in histamines, salicylates, yeasts, additives (including those in drinking water) can all be problematic for those sensitive to them. I'd add lectins and many of the other so-called "anti-nutrients" to the list. Many of the latter can be high in legumes, grains and seeds/nuts of all kinds in particular.
I don't know if you've considered too whether something in your environment has caused your immune response to go into "hyper" mode in general, so you're just very sensitive to everything? I'm thinking chemicals around the house (including cosmetics, toiletries, cleaners), moulds, any chemical spraying in your area, heavy metal exposure etc.
A difficult detective job for sure, I wish you the best of luck with finding a solution!
I'm wondering if you have gastroparesis. Then it doesn't really matter what you eat because it's the way the stomach digest the food that causes the discomfort. I would ask for a test for that
I was diagnosed with GCA and PMR about 2 years ago and was given 75mg prednisolone. I am now down to 2.5 mg. Almost immediately, some of my skeletal muscles would spasm for hours. I lost kg of muscle. My back got so bad I was unable to get into bed or out of a chair for a few months. Then the pain started after eating. It seems my oesophagus would spasm and the pain was terrifying. I found that sipping about half a glass of plain ENOs would reduce the pain. I have not had this problem at all since my prenisolone dropped to about 20mg and below. I particularly found that I had to be careful how I drank various fluids. About 10 years ago I was diagnosed as salicylate intolerant by a dietician and my GP using the elimination diet approach. I was also biogenic amine sensitive (includes histamine), bread preservative and sulphite sensitive. ENOs is used by some salicylate sensitive people when levels in the body are too high.
Prednisolone reduces histamine sensitivity. I now find that I am finally not so sensitive to salicylates either. If it is appropriate and you wish to learn more, google fedup.com.au and the RPAH allergy centre (Royal Prince Alfred Hospital) in Sydney.
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