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Low histamine diet

I finally decided to pay a nutritionist to do some allergy tests.  Having read so much about gluten intolerance I decided I'd better find out whether that was part of my bladder problems.  Fortunately it isn't - I'm clear from food intolerances (phew!) but the test did show a very high level of IgE antibodies, suggesting some kind of allergy/autoimmune disease.  

The nutritionist has suggested trying a low-histamine diet for a few weeks to see if that helps.  Has anyone else tried this?  Any success? 

I already know that my bladder reacts badly to a lot of things on the list - red wine, mature cheeses, preservatives - so it kind of makes sense.

Does anyone have any advice?

Hello SandraB,


Which allergy tests did you have done and were they for both IgE and IgG? There is a lot of debate among both doctors and nutritionists as to the reliability of some of the allergy testing. With intollerence testing it seems there can often be a lot of false infomation.  

There is also another problem that some are not always aware of which is,  that if you have a low Secretory IgA (mucous lining protective immunuglobulin) standard coeliac and gluten sensitivity tests can come back negative even if gluten is a problem. This is because as the Sec IgA is so low, that there is not enough of it to act as a marker or indicator.  Did your nutritionist tell you about  this as it is or should be well known within the field of all practisioners - alternative or allopathic. That is why so many people are left undiagnosed with gluten problems when in fact it is causing an immune response.

Have a lot of experience of a "through the roof IgE reading". There is definitely a connection with autoimmune problems and allergy with IC and bladder problems. Just wish the medical profession would wake up and see it but urologists unfortunately will not speak to allergists as they don't believe allergy can affect the bladder despite all the knowledge of allergy and IC in the States.

Hi Davidsmum,

Thanks for your reply.  You have obviously done a lot of research into all this. 

The test I had done was through one of the top laboratories.  The scientific bit says it looks at 'Leukotrienes', 'inflammatory mediators produced by... mast cells', and should have picked up 'both IgE and non-IgE mediated reactions'.  So I'm fairly confident that they would have picked up any problem.

From what people have since told me, I gather that contrary to what the nutritionist told me, my total IgE is not terribly high.  My reading was 209, but I gather they can go into the thousands?

The nutritionist's other suggestions were to reduce the amount of sugar I eat (which I am doing), to drink nettle tea, and to take Quercetin supplements.  Has your son had any success with anything like that?

best wishes,
Sandra.

Hi SandraB,


Average reading for my son on IgE is always up in the 1,100 range - very high. This is supposed to be due to hay fever, dust mite, pollens etc. but as it is like this all year round there is more going on than that somewhere. However, some laboratories use different scales to the NHS scales for IgE so you have to go by their scales and see where you fall.

Quercetin is supposed to be natural antihistamine, but I don't think you can take too high an amount of it. It is not as clear cut as nutrtionists tend to say it is. You could try it. Son hasn't used it a lot and we may try it again, but the one time he did try it it tended to give a headache, but then that may have been something else.  I believe that Quercetin should be taken with Bromelain to help absorption which of course is no good if you have an allergy to pineapple! Vitamin C is good for stabilising mast cells but again a problem as most IC people have trouble with vitamin C and it can irritate the bladder - even the buffered or Ester C. type.

But on the gluten/coeliac tests - they are not really looking at IgE or IgG - there are different markers of immunoglobulins and things like transglutaminase markers that they are assessing.  If your Secretory IgA is low all tests will come back negative. Maybe with gluten you have to see if it has any effect if you withdraw it and then do a challenge by having lots of it to see if any pattern can be found.

Hi Davidsmum,

Yes, maybe at some point I should try going gluten-free for a while to see if it makes any difference.  I suppose that's the surest way to know.  Any idea how long I would need to cut it out, in order to see whether my bladder improved?

I've been trying quercetin & bromelain, but that doesn't seem to agree with me.  Buffered vitamin C is OK, and I've been taking that for a long time with possibly good results on my general allergies which have been much better this summer.  I used to take antihistamines every day, but I've weaned myself off those this year and just take a quarter occasionally if I start itching. 

However, I'm never satisfied! and always looking for ways to feel a little bit better.

Best wishes to you and David (and anyone else reading!).

Sandra.

Hi SandraB,

Hopefully someone else reading these posts may have some advice re allergies and gluten. The whole gluten issue is very confusing and I do believe gluten is responsible for a great deal of medical problems and not just IC. More and more gluten is being put into breads and commercially prepared foods now -  for instance the Chorley Wood Bread Process was able to increase yeast and gluten content in bread to make loaves faster,  bigger and more stretchy!  so there is a lot more gluten content these days of it in many foods.

I would say you need to at least do several weeks gluten free to see if any improvement is felt.  Also Candida Albicans and gluten share the same protein strands and make up and the body can get confused with these so someone with candida may possibly have the same problem with gluten. There has been research done on whether Candida Albicans is a trigger for Coeliac (Lancet 2003) - quite possible I would think if the protein make up is the same and the body decides to attack both.

The Better Bladder Book discusses a lot on gluten and its problems. So many people with IC do seem to have a problem with gluten so worth a try. 

I've been on the low-histamine diet for nearly 2 weeks now, and so far no improvement.  Only another 2 weeks to go, then I can tell the nutritionist it didn't help, and go back to eating fish, goats cheese and an occasional little bit of chocolate.  Yay!

Awh! Poor SandraB
So annoying, having paid our money and still no answers,Grr!!!
We all hope we will find an answer to the 'Holy Grail' I do hope maybe the next two weeks will show some improvement for you..
Sadly,we usually go back to square one, as we are all so different,and do our own trial and errors!!!
I know you will let us know your outcome....
LOL!!! will watch this space
Take care
Kate

Hi all,

Thought I would give my tuppence worth as this post discusses a few things that I have experienced...

I saw an NHS nutritionist and she tested me for IgE responses to some foods that I already knew were affecting my bladder (I had successfully cut them out and found a vast improvement in symptoms). They were the gluten containing grains and soya. All tests came back negative, however the nutritionist should have known that IgE reactions are only tracable if you have been in contact with the allergen. I asked about IgG testing and was told it was far too expensive and that if I had any intolerances tracable with an IgG test then they obviously weren't serious ones and so it wouldnt matter anyway. This was all no help and so I just got on with avoiding the foods which I knew were a problem.

Sandra if you are reacting to blue cheese, red wine and preservatives it sounds like you may have issues with mould (which links into what davidsmum is saying about candida) perservatives have also been an issue with me and I avoid them as much as possible, then with the red wine try to think about sulphites - my aunt has a massive problem with sulphites and had to totally change her diet to reduce the sulphite intake - so that might be something to try and avoid. (take a look at this link for more info on sulphites http://www.allergyuk.org/fs_sulphite.aspx)

I have never had any medical proof of any of my allergies/intollerances. All I know is that I felt so much better once I had worked out which foods were an issue and cut them out. Since I've been on my totally new diet I've had a couple of occasions where I ate something which caused me issues. I had gammon a few months back and it had dextrose on the outside (a type of sugar made from wheat grains) and that eveing I felt SO sick and I thought I'd actually be sick but I wasn't. I finally managed to sleep and woke up the next day in total agony and kept peeing all day. I have also accidentaly had some soya in a gluten free pizza base in a restaurant and had the same problem occur. I don't eat potato anymore because it caused me problems too, and because of my reaction to potato I have also cut out tomato, peppers and aubergines to be on the safe side - they are all from the nightshade family.

With me I spent a good long while trying tests and trying to get help from doctors, uros and alternative therapists, mostly I got little or no help (and a big bill at the end). In the end I decided to stick to my own intuition and give my body the cleanest most tame diet I could. And now I am happy to say that because I know which foods to avoid the only problems I get now are stress related (where my muscles tense up putting pressure on my bladder and causing discomfort - and I know how to deal with that now after seeing a pelvic floor specialist) and frequency (which I have found to be related to stress also).

Also wanted to say that I have changed all my body products to natural ones because I found I was reacting to chemicals on my skin - this was affecting my bladder and I know it seems like it wouldnt but it honestly does. So perhaps thats an avenue worth looking into.

Something else to add is that its really important to have probiotics. The amount of antibiotics most of us have had really puts our gut lining under alot of pressure. When the good gut flora as well as any bad bacteria causing issues is killed off with antibiotics this really can make everything alot worse. THe gut lining gets inflamed, and thats how allergies and intolerances start. I take one daily and I swear by it. Trouble is finding one that suits you - I have a dairy based one in powder form with no FOS or anything else in, many have potato (I found that out the hard way) or other strange things in - sometimes even gluten.

I hope some of this can be of help

little_ducks x x




Thank you so much, little_ducks and Kate, for your support and suggestions.

My main reason for going to the nutritionist was to get tested for gluten and other food intolerances (both IgE and IgG), and for candida.  Those came back negative, and apparently my gut is in great shape - possibly because I have been taking probiotics regularly.  The only problems that showed up in the tests were a high overall IgE antibody count (which is why the nutritionist has suggested trying a low-histamine diet for a month), and my morning cortisol levels are very high (which I'm certain is because of one of the drugs I'm on and gradually trying to reduce).

Little_ducks, that's terrible that you can't even eat things like potatoes.  But you are absolutely right that you need to trust your own intuition about what is OK and what will make you feel worse.  It's just that I had read so much about gluten intolerance and candida that I really thought one of them (or both) might be the 'magic bullet' for me.

I have found the same as you with chemicals, etc.  I only use Dead Sea Salt and a few drops of essential oil in the bath, and put the minimum of products on my skin.  My bladder has even sometimes reacted to other people's perfume!

I was interested by what you say about seeing a pelvic floor specialist.  Deep down I know that is a big part of my problems, but have always been too embarrassed to talk to my doctor about it (having a dodgy bladder is bad enough!).  Did you get a referral through the NHS, or did you find someone privately?

Very best wishes both.

Sandra.
xx

Hi Sandra,

I don't really mind not eating potato if it means that I don't have bladder pain and I make roasted sweet potato, carrots, parsnips and courgette which I always have if I'm having sunday roast with my family or friends. And I make polenta chips to have instead of chips which is a great alternative really scrummy! I make it my mission to find alternatives for most of the things I can't have.

My pelvic floor specialist is lovely, I saw her privately because I was lucky enough whilst a student to be covered by my dads health insurance through his job. I am no longer covered and so any visits to her will be fairly expensive (around £50). I went to my NHS doctor and asked to be referred, luckily my doc is pretty understanding and know alot about my case, shes has probably be the most open minded and supportive of the doctors I've seen in the last couple of years since all this started. Anyway my insurance company found a suitable specialist in my area and I then booked to see the lady in question, if you'd like her name I can email it to you. She has been lovely the whole time, I never feel uncomfortable even in internal examinations and she talks to me about all aspects of my problem even those that you would think aren't linked to the tightness of my pelvic floor muscles. She found mine to be very over tight and thus they put pressure on my bladder and cause pain and frequency. I have had exercises and we have discussed stress as this has a big impact on my pelvic floor. Its loosened up really well and she is happy with my progress. I found the best way to discuss a referal with my doc was to explain that I felt there was over tightness of my muscles which was impacting on my bladder and I explained that I had done some research into the link between IC and PC muscle tightness. I also said that during exercise my muscles would get so tight I would have real trouble relaxing htem off again.

I hope this helps
love
little_ducks x x

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