Gluten sensitive. Gluten what???

18 Mar

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:










Irritable Bowel Syndrome


Chronic Constipation

Iron deficiency anemia


High Cholesterol

Non alcoholic fatty liver disease


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


• 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


• 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


• 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


• Biliary cirrhosis

• Psoriasis

• Dermatitis

• Sjogren’s syndrome

• Short stature

• Scleroderma

• Steatorrhea

• Spina bifida


• Tremors

• Parkinson’s disease

• Glossitis

• Vitiligo

• Vomiting

• Vaginitis


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:

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!!

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!

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

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!


6 Responses to “Gluten sensitive. Gluten what???”

  1. Jackie March 23, 2012 at 9:01 am #

    Hi Nele,

    What do you mean by “DG1/DG1 double whammy”? I’ve googled this DG1 thing and can’t find anything on it. Is that what they tested you for?

    I’m the opposite of you… I stopped eating gluten ages ago and still have loads of problems, which I only linked to a histamine intolerance yesterday and hope to go get tested asap.

    Where are you located? I’m in the UK, although I’m American, and worried about finding a doctor who will willingly send me to a nutritionist for my problems.


  2. playingthehandiwasdealt March 27, 2013 at 11:34 am #

    HI Nele,

    Great blog! I referred a friend (also a WP friend) to this post. She’s so excited to read this due to her myriad of health issues! I have a few thoughts/questions due to my own issues, if you don’t mind lending an ear. 🙂

    Part 1:
    I have a genetic connective tissue disorder called Ehlers-Danlos syndrome (EDS), Type II. It causes the body to not produce/synthesize collagen correctly. I got sick from it 12 yrs ago, but I developed severe GI issues a couple years prior. I removed gluten from my diet (negative for Celiac Disease per biopsy/tests) and was like you but GI-wise. I thought the gluten helped but I was still a mess until I realized I swapped gluten for lots of polenta (corn) and tortillas (corn). Ditched the corn and all grains but rice and was great for years. I still only eat rice. GI issues are a symptom of EDS. Then, things got bad again about 5 years ago. I discovered the FODMAPs diet, which doesn’t really fit with your blog here, but it seems to be the cure for me (deals with major food intolerances, so might help your readers). Not sure why I can’t digest anything–EDS? Who knows?

    Part 2:
    About 3 years ago, I got massive skin allergies (ulcerated, itchy, horrid mess) and mainly on my legs, but had it on my back for a while. I get big red splotches, hives, chronic red bumps, and wake myself up scratching. I noticed that cinnamon made me itch, then every other spice, then 95% of food. No doctor could help. It took 2 years to discover they all had salicylates in them (high histamine as you know). I found one thread of “itchy legs and EDS” and comments were closed. No EDS doctors here. My derm is lost (biopsy did show mast cells but allergist says it’s not Mast Cell Disease as I asked). The pathology report said NOT eczema (have had it before) and it’s not like eczema at all! My legs aren’t good right now as I moved, so there is some environmental factor to this too, but the trigger foods are the worst and I avoid as much as possible.

    I know you’re not a medical professional, but if you have any posts on here or if you’ve heard of this on your blog or elsewhere, I’d love to know. Does this sound like Mast Cell Disease, which I presume pops up on here? That seems like way more than crazy, itchy skin. I tend to not trust the doctors out here in the States as we get 5 minutes with them! I blog on health issues too, so no worries with me.

    Thanks so much and sorry for the long comment (long story!),
    Alisa 🙂

  3. A-Lai May 22, 2013 at 1:59 pm #


    My children and myself are histamine sensitive. But lately I have been wondering about gluten for my 18 mo girl who has improved a lot in many fields with the low histamine regime because while she finally sleeps all night long she has been gradually reducing her sleeping time in the morning. This influences the siesta which is always difficult ans she lacks at least 1h30 to 2h30 sleeping time per 24h. I am wondering because this could be related to my using less rice and much more wheat pasta (instead of wheat or other non or low gluten cereals). So I was thinking of the possibility of being not intolerant but sensitive to a lesser degree.

    But how to combine low histamine and low gluten regimes ?
    I have te impression to sart again from zero 😦

    Tks for your comments

    • histamine intolerance August 7, 2013 at 12:44 pm #

      I have NCGS, or non celiac gluten sensitivity. It means I can’t tolerate any grains, nor rice or corn. It takes a bit of adjusting to scratch that, but once you’re used to it, it’s very easy to obtain 🙂
      PS: I have a double DQ1 whammy in my ncgs. This means that gene is defect and that gene is also responsible for…sleep. Look out for purehealthclinic with Micki Rose for proper testing. She’s an angel.

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