Testing for food allergy/intolerance

[Kaz261]

Morning all! Has anyone of my fellow RHers been referred to an allergy specialist?

My GP and Endocrinologist had a chat last week to see if there are any further tests that could be carried out to throw any further light on why I'm still not feeling great and they came up with a referral to an allergy specialist?!!

No suggestion of a 72 hour fast, breakfast or mixed meal test or checking my insulin levels etc! All they could come up with was the allergy thing.

I'll go along with it especially as my health insurers have agreed to cover the consultation, but I'm not at all convinced it'll lead to anything productive. Any thoughts welcome

 

[Lamont D]

I can only tell you of my experiences.
So, I don't have any food allergies, but I can't eat, dairy, cooked greens as they make me hurl, really bad.
I know now that, grains rocket my bloods, so do spuds, it's what's in them that do it!
Starch and too much.
It's the same that I have no tolerance of sugar, that's not unusual in itself, but it triggers the glucose dumping and excess insulin, that's what happens.
There is no harm in doing the allergy tests.
You never know what you might discover!

 

[Kristin251]

Are you concerned for BS issues or digestion etc?
The elimination diet is good for intolerances. I have a lot of intolerances but no allergies. My BS does not tolerate a lot of foods but neither does my stomach. Grains and dairy are huge for lots of people. I know eggs, nuts, citrus cause issues for many as well but those are more digestive or inflammatory issues than BS

 

[Lamont D]

Are you concerned for BS issues or digestion etc?
The elimination diet is good for intolerances. I have a lot of intolerances but no allergies. My BS does not tolerate a lot of foods but neither does my stomach. Grains and dairy are huge for lots of people. I know eggs, nuts, citrus cause issues for many as well but those are more digestive or inflammatory issues than BS

Hi,
Kaz has a condition which causes problems with all types of carbs and sugars, they in themselves are not an intolerance, but what our hormones do to us during digestion, we have an imbalance in our insulin output. (Excess!)
It is a relatively new condition to most medical care providers. And they don't or cannot understand it as it is so difficult to diagnose it.
There is also one of those conditions exacerbated with other conditions, as a couple have T2 with the RH!
Input is invaluable and any ideas is helping.
Kaz may have intolerance which will probably help her in deciding how to control and she is doing great at the moment.
I think her endo is unsure how to progress, as there is no cure, but diet of very low carbs is paramount to control.

 

[shantimaz]

Last Christmas I had my first food allergic reaction. I saw an allergy specialist (back home) that ordered blood test for food antibody of the things I had eaten. Everything was ok, except barley that was borderline. And the general antibody was high.

He suggested to have further investigations here in London. I showed the results to my GP and she told me she was going to get advise on what to do.... I guess I need to visit her again!

 

[Lamont D]

Last Christmas I had my first food allergic reaction. I saw an allergy specialist (back home) that ordered blood test for food antibody of the things I had eaten. Everything was ok, except barley that was borderline. And the general antibody was high.

He suggested to have further investigations here in London. I showed the results to my GP and she told me she was going to get advise on what to do.... I guess I need to visit her again!

Barley, of course is a grain and I am not allergic, but I don't have a tolerance for any grains.
It won't harm you to get her view.
Ask her to do one for wheat as well, as there are people susceptible to wheat allergies and intolerance. If you can't have dairy like me because of the high (ish) levels of lactose or even fruit (fructose). Reading through the amount of literature, that I've looked through, there is a form of Hypoglycaemia, that is supposed to be caused by hereditary fruit intolerance, who knows?
Hope you are ok and getting your head through all the threads and information.
We try and keep the advice and information that you can understand.
It can be daunting and confusing. Especially if you're not from around here.

 

[shantimaz]

Barley, of course is a grain and I am not allergic, but I don't have a tolerance for any grains.
It won't harm you to get her view.
Ask her to do one for wheat as well, as there are people susceptible to wheat allergies and intolerance. If you can't have dairy like me because of the high (ish) levels of lactose or even fruit (fructose). Reading through the amount of literature, that I've looked through, there is a form of Hypoglycaemia, that is supposed to be caused by hereditary fruit intolerance, who knows?
Hope you are ok and getting your head through all the threads and information.
We try and keep the advice and information that you can understand.
It can be daunting and confusing. Especially if you're not from around here.

Thanks Nosher! It's very helpful to read through all the posts.

Wheat and milk antibodies were negative. I can only digest small amounts of milk since childhood.

I am doing fine now, but I do sometimes feel sad and angry remembering how difficult these past five years have been. Such a waste of time. I also wonder which are the consequences of years of bs problems for the body, in terms of life expectancy. :/

 

[Lamont D]

I really do know how you feel, it still angers me sometimes, if truth be told, then, I shudder to think what would have happened if I didn't get diagnosed by my endocrinologist.
If my weight and my endocrine system getting worse, or my heart gave out, maybe my brain would have exploded with the horrible symptoms of uncontrolled bloods.
I think I would have been definitely in depression!
Or, I would have been blissfully unaware of what was going on, as my befuddled brain went into full decline!!

Thanks Nosher! It's very helpful to read through all the posts.

Wheat and milk antibodies were negative. I can only digest small amounts of milk since childhood.

I am doing fine now, but I do sometimes feel sad and angry remembering how difficult these past five years have been. Such a waste of time. I also wonder which are the consequences of years of bs problems for the body, in terms of life expectancy. :/

 

[Kaz261]

I went to see the allergy specialist yesterday and have to say the consultation went nothing like I expected! The good news, I don't have any common food allergies. He didn't test for many. The negatives? He didn't have the referral letter from my GP, but did have the results and letters from my consultant which the surgery went with the referral. I began by telling him very briefly what had happened over the last few months and the RH diagnosis I'd been given. Within 5 minutes he produced a leaflet on fibromyalgia and told me with 100% certainty that's what I have! ALL of my symptoms can be attributed to fibromyalgia apparently and although he wasn't saying I didn't have RH he thought that was only 10% of my problem. I'm a little confused and very pee'd off!

I explained that my symptoms can also be a result of RH, which he completely dismissed. Apparently, vivid dreams and muscle twitching amongst other things aren't RH! He was a Professor and not the kind of person to discuss or argue with, but I did tell him "I beg to differ"! Apparently I need a complete lifestyle change as well as a change in my thinking. I need to chill out more! If I don't, the muscle pain (that I don't really suffer from) will get worse.

I clearly need to do some research to understand the condition better, but wondered if there was any connection between fibromyalgia and RH? I feel like I've been labelled with a chronic condition from a brief, very rushed consultation with no tests carried out or planned, no advice as to how I can treat it and no follow up recommended. To say I'm annoyed is a huge understatement! Rant over!

 

[Lamont D]

Hi, Kaz.
Sorry, it didn't go as planned for you.
I will look at fibromyalgia later on, to see the details.

However, two things.
RH ers do have problems with dreams and sleep disruption, I've read that on a few web sites.
Brun did do a poll thingimybob, that I can't find, that shows the majority do!
And as I've posted before many times, majority of doctors especially those who don't specialise in RH, dismiss it. My endocrinologist has said to me that his professor who taught thought that RH was a thing of the mind rather than body.

I will get back, as I'm at work hiding away from the horrible snowy weather.
Oops got to go!

 

[Brunneria]

Oh hell.
Now you are going to get another letter in your records telling future health care professionals that 'it is all in your mind'

 

[Kaz261]

Thanks Nosher, appreciate that. To be fair Brun, the one thing he did explain in some detail was the fibromyalgia is now very much recognised as a real illness. I did get diagnosed with chronic fatigue syndrome in my twenties and he says fms can follow on if you don't slow down and treat it properly, which I never did. I honestly don't believe he's necessarily got it right. That said, I have often wondered if there was something else going on as I've never seen a huge improvement in my symptoms despite diet change. The LCHF diet for instance made me feel rotten.

He said fms can cause shakes, blurred vision, dizziness, headaches, fatigue, muscle twitches and aches, eyelid twitching, disturbed sleep, is affected by hormones plus lots of other things. Most of which could be RH also, which leaves me more than a little confused! He also said that people with fms tend to notice every little change in their body, which is why I notice bg rises and falls. Could explain why I get the shakes at normal bg levels perhaps?

I think if he'd have taken longer than 5-10 mins to diagnose it, I might be a bit more convinced!

 

[Brunneria]

Well, if you can make it fit, it is definitely worth exploring, but from what you said, he has dismissed a chunk of your symptoms, told you that you have other symptoms (which you disagree with at least partially) and is doing no tests to confirm things...

Whatever happens, his interpretation of your rushed appointment is going to get recorded in your notes for all future HCPs to see.

Don't have time to do more than glimpse Fibro on Wikki atm, but there is an interesting link to Fibro and gluten, which may well be worth you pursuing.

 

[Lamont D]

Now, that I have done a little bit of reading, there are similarities but the main symptoms such as pain and stiffness are not the same as RH.

The same symptoms such as anxiety and a feeling of depression are the same, but others conditions can do this as well as fibromyalgia and RH.

As far as the sleep thing. If you have any sleep problems you will get tiredness. But nothing is mentioned about vivid dreams in what I've read so far.
Having had chronic fatigue syndrome, there will be different aspects to your health and how it affects what ever you have.

I think that the consultant was rash in quick diagnosis without tests.

I can't find anything that is connected with both conditions, except certain symptoms.

 

[Lamont D]

My giddy aunt!

I think I may have fibromyalgia.
The more I read, the more I'm certain that I must have it!!!!!

Chronic fatigue syndrome and fibromyalgia go hand in hand, and it's no wonder your consultant had that leap of faith and jumped so quickly to his quick diagnosis.

Now, the ideal diets for a patient, and your gonna love this!
Is to have a well balanced healthy diet!
Which includes, healthy wheatgerm and whole grains. Cereals and low fat dairy.
Good starchy vegetables.
Stay away from saturated fats.
Low fat and lean meats.
This is because of its.
And be gluten free!
You get the idea? Haven't we seen this somewhere else?

 

[Kaz261]

You've both confirmed my thoughts and very brief research. I don't have the pain or stiffness. The trouble is when he asked the questions he said the correct answer is yes or no. Said if I had ever suffered with the symptoms even if it was years ago or just for a short time then the answer should be yes. On that basis, yes I very occasionally have vivid dreams, I occasionally have muscle aches, I occasionally have a headache etc but as I clearly pointed out, none of which are frequent or troublesome and I'm sure the vast majority of the population would answer yes!

As you say Brun, it partially fits but then again RH partially fits too and my Endo at least confirmed that with tests! I'm sure if I google the symptoms it would partially fit with many other conditions too!

I'll go along with it for the time being and when I get more time I'll research it further. My father is poorly at the minute, so between helping out back home and looking after the kids etc, time is very limited. I'll also speak to my GP about it to see what his thoughts are. The referral was done as a private one. My Endo recommended this professor and he doesn't do NHS work. I would very much like a second opinion though.

Thanks for your input and advice both. As always it's very much appreciated. Good luck dodging the snow Nosher! It's only sleeting here in the Midlands, much to my 2 year olds disappointment!

 

[Kaz261]

I think that dietary advice is the NHS standard for every ailment! As usual I shall be ignoring it and doing my own thing! Always was a bit of a rebel lol!

 

[Lamont D]

Professor ok,
Ten minutes ok,
Quick diagnosis, ok,
Private, ok,

Money for old rope! Ok!

Where can I get a job like that?

 

[Kaz261]

Haha! I don't know but if you find out can you let me know please! I would like one! Thankfully Bupa are paying, otherwise I would have been even more racked off!