Christmas!!!

A quick vlog on how to do your Christmas food shopping!

So you think I’m rich because I’m food intolerant?

Ok, so there has been a lot of discussion going on about being food intolerant and having money.. here’s my 2 cents on it 😉

Histamine and insomnia

Helpful link to meditation:

http://thelowhistaminechef.com/histamine-reaction-busting-meditation/

Finding a new doctor

After having moved, I faced the task of finding a doctor who would take me seriously…

Reintroducing Foods.

Yup. Finally a new video.

So you’re in THAT box…

And I wish I was referring to the Doctor Who police box. Unfortunately Im not.

This has been on my mind for quite some time, but today I finally felt the trigger to actually write about it. And I would like to point out that this post isn’t specifically about food intolerant people, but any type of gal or dude that is considered ‘limited’ in any sort of way. With ‘limited’ (please note the brackets, i honestly detest the term…) most people mean others that can not function the way they should in society. people who have severe food intolerances, fears, physical disabilities, chronic illnesses, mental disorders and/or illnesses… The list goes on.

What do I mean with THAT box? I’m going to try and explain this from my point of view, and more, experience. I have been chronically ill for almost all my life in one way or another *makes mental note to send grains a thank you gift * (NOT), plus I’m very chaotic, hectic and well…clumsy. Most people around me, who deal with me on a frequent basis, will notice this by simple means of deduction. For example: ‘ out of 10 times I try to go out with her, 9 times she will end up being too sick or too tired. So that 1 time she can go, I will tell her she is too tired or sick, and thus protect her against further consequences, and accepting that as her identity’. Or: ‘ she is very clumsy and will get into trouble. She is eager to try things, but always gets into trouble and I have to bail her out. Thus next time I will protect her and me and make sure she doesn’t venture out on her own, thus accepting the clumsyness as her identity’.

Noble as this may be, and I can perfectly understand why this is done, it is incredibly limiting on those you do this with. We are left with no chance to prove ourselves otherwise, to step outside THAT box that was created around us. Very often, this concerns people who have severe daily battles ahead of them, and fighting this on top of it might just be a little too much. A young man in a wheelchair is not his wheelchair. He is a young man with hopes and dreams. And maybe the wheelchair might not always get him everywhere he wants, there is absolutely no harm in letting him try. The beautiful mom with severe histamine intolerance is not her illness. Perhaps she gets tired so so rapidly, and can barely eat, but that doesn’t mean you have to decide for her what she can or can not do. The young woman who is seeminly so clumsy, always screwing everything up, might not be able to always get it right, or often even. But she too deserve a chance to prove herself otherwise.

It is very important to allow people to get energy out of things they CAN do, rather then to focus on things they can NOT do. Even if it means that 90% of the time it will fail, the remaining 10% it will succeed. And that 10% is not just us doing something we can, but it also shows you believe so much in us you allow us to try something, to challenge ourselves, to enable us to grow, and quite simply… let us do things for ourselves. It benefits us much more you are there when we try and fail, then when you prevent us from trying all together. Don’t be afraid, we will ask for help when things do not work out.

It’s up to us to step outside the box, but a little help never harmed anyone 🙂

As my father told my brother last week: ‘Just because someone is sick, or tired, doesn’t mean you should take away that one thing that gives them energy, or a spark of life. You should always respect that, no matter how ill, or tired, or poor they are.’

living with a histamine intolerant patient

 

A little rant ^_^

Histamine, grains and lectins?

So I’ve been missing for a bit, and will try to pick this back up again. I would like to speak a little of the things that I’ve been doing in the period I went missing, health wise.

Last time I blogged (almost a year ago!!!!) I had just done some tests. Everything went a bit pearshaped after that. I also had a test done to see how well or poorly my immune system was doing, and it came back with a bit of an akward result. I have mucosal immuno deficiency. Say what now? Yes, that was not just my reaction, but that of my treating nutritionist as well.

http://en.wikipedia.org/wiki/Mucosal_immune_system

For the majority of people with multiple foodintolerances, or even just one, they often experience that their immune system kicks up a notch causing allergies to happen, or allergy like symptoms.

Apparently, my body decided it had to be different. My wonderfull nutritionist suggested I would take helminthic therapy, as a last resort.

http://en.wikipedia.org/wiki/Helminthic_therapy

This is often used for people who’s immune system had gone all berserk on them, but because mine was deficient I wasn’t too keen on it. With the mucosal immunodeficiency, I felt I couldn’t risk lowering that any further.

After a few months of pain, misery, fatigue, illness and the lot I ordered this:

http://kirkmanlabs.com/ProductKirkman/503/1/CD-Bioticand/

It is a completely grainfree, eggfree, and dairy free probiotic. I was a bit carefull with it, because probiotics are fermented, and some are know to increase histamine in the body. Some bacteria are histamine safe, and others are not. This particular one contains Lactobacillus plantarum, which is thought not to be histamine safe. I started out with a very tiny dose, and gradually build up from there. After a while I started noticing my sleep pattern was getting entirely borked when I took these probiotics before bed. This – to me- was a good indicator my histamine levels were building up.

So thats where I was a week ago. Quite a lot to digest, all of it.

When you have something that is so misunderstood by everyone, and you start testing all sorts of things, expect a serious slap in the face. I was so used of running from one doctor to another, and just hearing not to worry about it, to come back when it’s really necesary, that it’s all in my head, having to eat foods that I was completely oversensitive too… You start believing it is all in your head, you are making it up.

So when you get those first tests back, and they do show you something is wrong it is a relief and a blow at the same time. A relief because all of a sudden this becomes real, it is no longer in your head, or a cry for attention. And a blow for that same reason. We have often been so conditioned by our healthcare to believe nothing is wrong with us, that the mere blood result that indicates otherwise, gives us quite the psychological shock!

I know for me, especially when i heard back about the mucosal immunodeficiency, it was a serious mental setback. All of a sudden, I had a visual, proof, real actual words and scientific numbers that showed me that I was really very ill. But if that was real, how could I cope with me ‘making it up’? And others believing I was making it up? Was it really real?

Getting results back, and indicating there is indeed something wrong with our bodies, after having heard and believed there wasn’t for so long takes reinventing ourselves. And that takes courages, and strength to do so.

I’m still on the probiotics, altho they are making me histaminey. If anything, I need to get rid of that extreme lectin sensitivity ruining my gut. I had a few blueberries this morning, and altho they are on no lectin list, i can assure you the extreme lectin sensitive person will not  like them. Scratch that, and move forward again! Always move forward!

Leaky gut and barrier problems

I had taken the HNMT-gene defect test a few months ago. It came back as clear, so I do not have a gene defect concerning histamine intolerance.

Off course once starts wondering what has triggered it to flare up? Leaky gut syndrome can be a cause of many intolerances.  Now what is Leaky Gut Syndrome? Basically, it means that underlying food issues such as other intolerances and the lot, can cause  damage to the gut causing it to get more ‘leaky’. So your gut barrier is just letting a lot more stuff through then is really good for you.

Let’s say you have a lactose intolerance, but unaware of it.  Because of the constant triggering of your gut barrier, you will cause inflammation and your gut barrier will get more leaky. Because it gets more leaky, other stuff gets into the bloodstream that really shouldn’t be there causing your body to react to it.

This was sent to me by my nutritionist Micki Rose:

“A leak in the intestine- the leaky-gut syndrome

In people with leaky-gut syndrome the “tight junctions” between the mucosa cells have become loose and with this the permeability of the gut mucosa is increased. The causes for this can include:

A bad diet, taking pain killers and/or antibiotics, gut dysbiosis or psychological stress. The leaky gut mucosa releases substances into the blood stream like allergy causing antigens and histamine, which should normally not be absorbed.

Practice has shown that the well-known allergy of the immediate onset type actually had to be classified into three groups:

a) The classic immediate onset allergy triggered by specific

IgE antibodies.

b) Histamine intolerance

c) A combination of a) and b)

In each of these groups the leaky-gut syndrome can occur and again lead to a considerable worsening of symptoms.”

So there you have it. Often one foodintolerance goes hand in hand with another, and this is the reason why.. Healing the gut should always be on your list of things to do 😉

I also want to refer to the article below, as Micki Rose has a knack for explaining it better then I can.

http://trulyglutenfree.co.uk/2011/10/06/hope-for-gluten-sensitives-and-multiple-intolerants/

And then this. Leaky gut can be tested. Even tho its a bit expensive, it might give you proper insight on how well/bad your gut is doing!

http://trulyglutenfree.co.uk/2011/12/19/new-barrier-permeabilityleaky-gut-test/

And also this is definetly something to keep an eye open for!!!

http://trulyglutenfree.co.uk/2012/03/19/can-we-stop-the-gluten-sensitivity/

We’ll be needing to keep an eye out on all barriers, and not just the gut!

Gut luck to all!

Gluten sensitive. Gluten what???

So I have been doing research for the past 6 years now into histamine, and only the past year I have been looking more into gluten.

The reason for this was very simple. Altho I had been on a histamine low diet for 5 years, I was getting daily headaches and migraines that would last weeks, my joints and muscle would feel like I was run over by a truck, and I still couldn’t sleep was waking up every singly night multiple times per night.

I didn’t have a clue what was going on, was on a LOT of painkillers and very often friends and family just told me it was all in my head. You can imagine that wasn’t really helpful for my mood at all. I seriously started believing I was just making it all up till a very lovely and bright lady mentioned a nutritionist to me. I contacted this lady and explained  my symptoms and the first thing she said was ‘if you don’t have NCGS, I’ll eat my own hat’.

She never had to eat her own hat.

NCGS. Non Coeliac Gluten sensitivity. Say what? Yup, that was my reaction too. I only ever heard of gluten intolerance, or coeliacs so this was all ever so new to me.

The test results came back a double DQ1/DQ1 whammy. So what did this mean? Basically I’m grain sensitive. Most gluten intolerant people and coeliacs are put on a wheat free diet, but truth is all grains contain gluten! Yup, including corn and rice too!

So I put myself on a grainfree diet, and symptoms soon started to get better. But that wasn’t the end of the ride tho… far from it.

It turns out I’m very sensitive to corn ( corn contains the gluten Zien, and up to 55% of it!!!!! No wonder its bad for you…) so I had to cut out all corn.

Well, that’s easy enough you might think. Well, think again! Corn is used in EVERYTHING!!!! As good as in all medication, make up, toiletries, sunscreens, householdproducts, etc etc etc… Believe me, tackling that still is a challenge.

Now why is this so important to me? Before I was diagnosed NCGS, I had already asked my GP about  possible gluten issues. She told me that I do not display the typical symptoms of gluten intolerant people.

Well, let me give you some of the symptoms that grain sensitive people suffer from..

“The Following Diseases Have Been Directly Associated with Gluten Sensitivity.

Those diagnosed with these conditions may benefit tremendously by being genetically tested for gluten sensitivity.

The following is a list of very common manifestations. Below is a more detailed list:

Asthma

Hypothyroid

Ezcema

Psoriasis

Autism

ADD/ADHD

Colic

Schizophrenia

Bipolar

Irritable Bowel Syndrome

Infertility

Chronic Constipation

Iron deficiency anemia

Osteoporosis

High Cholesterol

Non alcoholic fatty liver disease

Fibromyalgia

Chronic Fatigue syndrome

• Angina Pectoris (chest pain/pressure)

• Anorexia

• Immunoglobulinopathies

• Antiphospholipid syndrome

• Anxiety

• Apathy

• Apthous ulcers and canker sores

• Aortic Vasculitis

• Arthritis

• Juvenile rheumatoid

• Enteropathic

• Psoriatic

• rheumatoid

• Abdominal pain and distention

• Spontaneous abortion

• Addison’s Disease

• ADHD

• Alopecia (hair loss)

• Anemia (can be caused by the following nutrient deficiencies)

• Iron deficiency

• Folate deficiency

• B-12 deficiency

• B-6 deficiency

• Vitamin C deficiency

• Vitamin E deficiency

• Copper deficiency

• Ataxia

• Atherosclerosis

• Autism and other learning disorders

• Cholangitis (gall bladder)

• Dermatitis Herpetiformis

• Autoimmune hepatitis

• Polyglandular syndrome

• Thyroiditis (hypothyroidism)

• Bitot’s spots

• Blepharitis

• Abnormal blurry vision

• Bone pain

• Bone fractures

• Cachexia

• Bronchiectasis

• Bronchoalveolitis

• Adenocarcinoma of the intestine

• Small cell esophageal cancer

• Melanoma

• Asthma

• Cardiomegaly

• Cardiomyopathy

• Cataracts

• Cerebral perfusion abnormalities

• Cheilosis

• Chorea

• Coagulation abnormalities

• Crohn’s disease

• Ulcerative colitis

• Chronic constipation

• Coronary artery disease

• Diarrhea

• Lymphoma

• Cutaneous vasculitis

• Cystic fibrosis

• Delayed puberty

• Failure to thrive

• Dementia

• Depression

• Dermatomyositis

• Diabetes Mellitus type I (shares the same HLA genes as Celiac disease)

• Down syndrome

• Dysmenorrhea

• Dysgeusia

• Duodenal erosions

• Edema

• Eczema

• Dysphagia

• Epilepsy

• Spontaneous nose bleeds

• Erythema nodosum

• CFS

• Growth retardation

• Mental retardation

• Secondary food allergy response

• Blood in the stool

• Gastric bloating

• Grave’s disease

• Bleeding gums

• Hair loss

• Heartburn

• H. pylori infection

• Hives

• NAFL

• Malnutrition and nutritional deficiencies

• Infertility

• Hypogonadism

• Hypoglycemia

• Hypospenism

• Thrombocytopenia

• Impotence

• Osteoporosis

• Insomnia

• IBS (irritable bowel syndrome)

• Keratomalacia

• Lactose intolerance

• Loss of smell

• Non Hodgkin lymphoma

• Early menopause

• Migraine headache

• Multiple sclerosis

• Muscle wasting

• Myopathy

• Obesity

• Osteomalacia

• Osteopenia

• Parathyroid carcinoma

• Pancreatic insufficiency

• Polymyositis

• PMS

• Biliary cirrhosis

• Psoriasis

• Dermatitis

• Sjogren’s syndrome

• Short stature

• Scleroderma

• Steatorrhea

• Spina bifida

• SLE

• Tremors

• Parkinson’s disease

• Glossitis

• Vitiligo

• Vomiting

• Vaginitis

• UTI

Umpf, still with me? Quite the list aye? So you might suffer from Fibromyalgia and not even know it could be gluten related!

My symptoms were incredibly wide. Most important I suffer from migraines that will last days. I will wake up various times per night, usually bathing in sweat. My joints feel like they’re at about to explode, or have rusted solid. My skin will look horrid as well. Other symptoms I have are: ADHD, bone fractures, exzema, depression,… .

Quite the list right? And all that for something most people haven’t heard about! And here lies the problem. Because it is a bit of an unknown issue, a lot of gluten sensitive people remain undiagnosed. The big problem is that they may think they are gluten intolerant and will have scratched wheat, but will keep poisoning themselves with other grains such as rice and corn.

Sound familiar? Well, here are a few tips to help you out.

Keep a food diary. I seriously can’t stress this out enough how important this is! However with sensitivities it is always important to keep in mind you might be dealing with delayed reactions.. Keeping a food diary will provide a good summary and will give you a nice insight of all the symptoms you have.

Go grainfree! I know this sounds really hard, especially in this society where everything is made out of grains but trust me, it is possible! You can look up some very nice paleo cooking sites that will help you get creative in the kitchen.

If you feel improvement after having gone grainfree, you can either get tested or just continue going grainfree. After all, the human body was never engineered to digest grains…

Here’s a full very helpful websites:

http://www.purehealthshop.co.uk/shop/article_112/TrulyGlutenFree-ebook.html?shop_param=cid%3D4%26aid%3D112%26

I found this book very very helpfull! Not only explains it why gluten are bad for you, but also provides helpfull tips and tricks in how to deal with it! Definetly worth its money!!

http://trulyglutenfree.co.uk/

Michaela Rose’s website. She has NCGS herself, and she bombs this blog with tons and tons of info regarding food, supplements, cross contamination and tests! Very helpfull!

http://www.glutenfreesociety.org/

This society does genetic testing for NCGS. Definetly well worth taking a look around their website..

http://www.elanaspantry.com/

and some paleo cooking. Do be carefull tho! If you are very sensitive to grain, you will most likely not be able to tolerate grainfed chickens, or grainfed meat in general. Also, always go for line caught eco sustainable fish rather then aquaculture.

All the best!

nele