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PostPosted: 07 Jul 2010, 18:14 
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Hi everyone...

This is my first post and I've been following this thread for a while now... wow, how interesting! I'm currently seeing Dirk and he diagnosed me with histamine intolerance 3 months ago and I have been taking the Histrelief for 2 months now.

I'm now 40 and for 20 years I've had various health issues. My symptoms include an awful headache on waking with terrible sore, aching eyes which look red most of the time, I feel like I have a hangover every morning. I suffer with fatigue... mental and physical and a terrible fogginess, sometimes I cannot co-ordinate my words! On particularly bad days I feel like I've been poisioned or 'toxic', it's the only way I can describe it, and cannot function. On top of this I have typical IBS, I will spare you the details! Unlike some people on here I find it very hard to lose weight and keep it within a healthy range, I get terrible cravings for sweet food and have low blood pressure. I'm currently taking a steroid spray for my nose as it's constantly stuffy without it and it's hard to breath properly.

I have followed the low histamine diet with some success however, I do believe there are other things going on besides the histamine that I'm still trying to figure out. It has helped with the head symptoms but not so much with the stomach ones. I find my diet is very limited and I cannot tolerate a lot of food even if it's low histamine, especailly fruit and most starchy carbohydrates. I'm better with salads than veg too. SIBO and fructose tests were negative and I was also negative to salicylic acid sensitivity! :? One of the few things that I found helped my bloating were the Biocare probiotics but I was advised not to take them due to the histamine they produce.

Anyway, I think I've noticed on a couple of posts (and I maybe wrong as there are so many now!) that people are eating potato, potato is not low histamine, sweet potato is fine. I don't know if it's been mentioned but meat should be eaten fresh and should not be frozen.

Hilary - great info, thank you. I have ordered a couple of books and supplements you've recommended so will see how I go.

Lisa X


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PostPosted: 10 Jul 2010, 03:03 
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Hilary!

I think I need your help. I'm in dire straits with Fructose Intolerance plus Histamine Intolerance. You sound like you have the same problems as I do. Something is bothering me and the only thing I can think it might be is meat. How do you get your protein if lectins in things like rice and beans are not good for us either? I have lost 14lbs since January and I don't know where to turn. I'm in NZ with very little helpful professionals close at hand and eating very little.

:roll:


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PostPosted: 12 Jul 2010, 08:46 
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I am very sceptical regarding the fructose intolerance! If you do not have a sucrase-isomaltase problem, fructose intolerance is very rare...
Also: please try to understand that histamine intolerance is just a little part of the problem with the majority of the patients. It is too easy to put it all down to an allergic reaction to foods high in histamines.
Histamines (as an inflammatory marker) can be found in your heart, in your brain, in your lungs. Severe rheumatoid arthritis is related to histaminosis (a far better word than the harmless sounding “Histamine Intolerance”), Schizophrenia, Chronic Fatigue… you name it… it is all related to histamines.
It is easy to place a list of histamine rich foods on the web (most of the lists are actually wrong). If avoiding these foods does the job 100%, nobody would blog here any more.
That’s why we change the recipe of HistRelief all the time.
Please note, that so far 244 patients have used HistRelief (length: between 1 month and 12 month or even longer).
Approc. 140 patients are seaying that it helped a lot! 50 are saying that it helped at least a bit. The rest… sorry. No success yet.
Also bare in mind: the ones who are happy do not blog any more…
We keep on working…big promise. So far the development of this drug has cost us over £ 150000 and we are not allowed to make any profits…
Best wishes
Dirk Budka
www.histrelief.com
www.immunecliniclondon.com


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PostPosted: 12 Jul 2010, 10:41 
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If anyone has any questions about coping with their intolerance don't hesitate to call the helpline on 01322 619898, many of the staff suffer from allergies and/or intolerances themselves and have some great advice!


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PostPosted: 12 Jul 2010, 14:00 
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Joined: 10 Nov 2009, 18:10
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Before going to anyone advertising their services on the net including those which have been posted on my thread, please make sure to ask any authorities (eg. patient associations, food standards agency, the department of health’s medicines and healthcare products regulatory agency) about the credibility of those advertisers!

Extra information on HIT is also available on the new non-commercial website http://www.histamineintolerance.org.uk. You can have a look at the Histamine Intolerance Fact Sheet on the Allergy UK website. It is definitely a good start to call the helpline.

Greetings,

Genny


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PostPosted: 13 Jul 2010, 13:17 
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Joined: 25 Jun 2010, 04:45
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Is constipation sometimes a symptom of histamine intolerance?. My daughter (3) has had problems since she was tiny and I have resently had problems while my histamine intolerance symptoms have been bad. I am not sure if the two things are related or not ???

Does anyone know if baby milk formulas (casein based) are high in histamines?

Any info or advice will be greatly appreciated. THANKS


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PostPosted: 14 Jul 2010, 11:05 
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Genny

Thank-you for posting the address of the new website for histamine intolerance. We certainly need more publicity and awareness of this awful condition. As far as I'm aware, the only 'help' so far is dietary intervention. Is this correct? And what that doesn't cover we just have to live with. Bewteen fructose malabsorption and HIT there is so little I can eat now it is becoming quite scarey and I have lost a lot of weight. To date I still have not found anybody in New Zealand who can help me. I have found out where I can get a test for diamine oxidase levels from but don't feel it is worth the expense to find out 'officially' what I already know. If having the test resulted in effective treatment apart from diet, then I would do it, but it seems pointless. I don't ask for much......just a cure! lol.

Cheers :)


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PostPosted: 14 Jul 2010, 12:17 
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Joined: 10 Nov 2009, 18:10
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Hello,
This reminds me very much of how I was at the beginning. As far as I am concerned, the short answer is: Yes the answer is in the diet. I manage to handle it that way. Have you talked to a dietician? I do think that you need to get a proper diagnosis, but I don’t know what opportunities there are in the NZ health system. Having a diagnosis often opens the doors to other facilities such as the services of a dietician. As far as fructose malabsorption is concerned it is a question of knowing whether you have hereditary fructose intolerance, which would mean a strict special diet that would need to be worked out for you by a specialist (very important) or whether you have fructose malabsorption (also formerly known as dietary fructose intolerance) where you would need to work out how much fructose and certain other sugars you can manage to have and which sugars to avoid in order not to trigger symptoms. A book that has really helped me a lot on my long path of learning how to manage my conditions is one by a fellow dietary fructose patient who has based part of her book on research that has been done by the University of Kansas Medical Center and University of Iowa Hospitals & Clinics. It is called “Living with dietary fructose intolerance” by Judy Smith. The good thing about this book is that you are not blinded by science.
I wonder how you react to potatoes? I react very well to them despite all the discussion about them. Having these in as part of my diet plan has helped me keep my weight up, especially when things were taking a turn for the worse.
Getting to grips with this is often a question of ‘two steps forward, one step back’, but please persist and try not to get discouraged. Remember, you are not alone!
Kind regards,
Genny


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PostPosted: 15 Jul 2010, 08:08 
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Joined: 12 Jul 2010, 08:40
Posts: 42
Hi everybody

first of all I want you to enjoy this blog and my posting is not aimed at you getting discouraged.

We have just written to AllergyUK and health authorities NOT to promote the notion to make histamine intolerance (test and treatment) available via the NHS (through GPs) as advertised here and on Genny's website.
Histaminosis is a complex disease and NOT just an intolerance to histamine rich food. To say: Histamine/DAO tests should be done through the GP (Genny believes that this test cost Ă‚ÂŁ 35 :-) has no foundation. WHEN is the test ordered? Just by the patient telling the GP that he/she might have a histamine intolerance because he/she read about in on questionable, dubious or even not so dubious websites?
This would cost the NHS millions a year with no real benefits for the patients and the system.

The diagnosis of histaminosis might include tests for diaminoxidase, monoamine oxidase-b, H-NMT, virology, SIBO test, HPA, IgA, IgM, IgD, IgG, IgE, serum histamines, cellular Mg and B6, ANA, dsDNA, RF, etc...
To establish histamines as a cause of one's problem can be a very complicated process.
Should GPs be forced to send patients for a DAO test (some of them on offer are not even accepted and highly questionable) just because of a guess? Or because the patient insist to have a histamine intolerance?
It cannot work that way and we will oppose this petition all the way.
Enteral and cellular histaminosis and histamine related diseases like several autoimmune diseases (eg Rh Arthritis), as well as Cyclothymia and several viral infections (eg CMV, HHV6) is far to serious than be in the hands of self proclaimed health gurus, alternative treaters or patients who have been rightly or wrongly diagnosed with "histamine intolerance".

It will take another couple of years and the intense work and joined cooperation of scientists, cardiologists, gastroenterologists, rheumatologists, neurologists etc before we all might have a more or less complete picture.
In the meantime, new websites are going life on the net claiming to offer comprehensive tests and treatment methods. This is in our opinion - in the majority of cases - either exploitation of sufferers or just guruism.
Whatever it is: it will not serve the patients.
And yes: Frozen fish contains histamines, or better: it even increases histamine levels
Best wishes
Dirk Budka
Immune Clinic London
www.histrelief.com


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PostPosted: 15 Jul 2010, 10:41 
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Joined: 12 Jul 2010, 08:40
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Oh deer oh deer oh deerland :-)

yes, plant-based Diaminoxidase :-))))) It is like a vegetarian beef gulash
rgds
Dirk


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