Negative Blood Test (Opinions Needed Please)

[LePandaRouge]

Hi there,

As the title says, I was just tested for Celiac disease and got a negative result. I had never heard about celiac disease before I went to see a GP about the many symptoms I've had for years. After being in his office for 5 minutes, he said "I'm having you tested for celiac disease!!". It sounded as though he had never been so sure about anything in his life. lol

Here are some of my symptoms:

- Chronic migraines

- Bloating / abdominal pain / diarrhoea / constipation / feeling sick

- Chronic fatigue (long lasting - over 10 years)

- Aching joints and muscles

- Feeling weak / dizzy

- Numbness and weakness in right arm/hand

- Acne / psoriasis

- Back / neck / Shoulder / knees pain (despite exercising)

- Reaction to gluten (and more recently also to lactose)

- Depression / Anxiety / Fear and avoidance of social situations (made much worse - if not caused - by the fatigue and constantly feeling ill)

- I'm underweight no matter how much I eat (I'm 5'8 and 100-110 pounds... I dropped at 85 a few years ago)

- Anaemia on/off

- Feeling dehydrated despite drinking enough water

- Random sore throats

- Sometimes get lymph nodes on my neck that are quite painful and make my neck swell

- Asthma / hyperventilation

- Feeling spaced out (to the point of feeling like my movements are a bit delayed sometimes)

- As a child doctors couldn't figure out why i couldn't put on weight, I had anaemia to the point of having so many bruises the doctors thought my parents were beating me.

Maybe I should precise I'm 26.

Anyway, I tested negative for celiac disease and the other tests suggested everything is fine... no serious vitamin deficiency, all organs working fine etc. So what the hell is wrong with me then? My doctor was very understanding at the start and took this very seriously (to my surprise - I hear a lot of doctors are unhelpful when it comes to things like celiac disease).. but since receiving the results, I felt he looked at me as though I'm imagining all this. I'm no hypochondriac, gosh! He seemed to still be convinced I have celiac disease but just gave me prescription for asthma and pretty much told me "maybe you do, maybe you don't have celiac disease, who knows, bye".

I started the gluten free diet anyway and I'll see the result, but what do you guys think? Has anyone had serious symptoms specific to celiac disease and tested negative with no vitamin deficiency?

(Sorry for the long post and thanks for bothering reading it.)

[ravenwoodglass]

I am one of the estimated 20% (NIH) of celiacs who test negative on blood tests. It delayed my diagnosis by many, many years. Has your doctor mentioned you having an endoscopy with biopsies? If he has and you are going to do that keep on gluten until that is done. Otherwise I would give the diet a good strict try and see if it helps. You could also do Enterolab testing which does not require you to be on gluten at the time of testing.

[GFinDC]

Yes, several people have posted in the past about having negative tests but having lots of symptoms. And then getting better on the gluten-free diet. There are also people who have no GI symptoms and test positive for celiac. The tests for celiac are not at all perfect right now, even the endoscopy misses some cases.

A real good real test is if it makes you feel bad, don't do it. So you could try the gluten-free diet for a couple months and see if you start to feel different. You don't need a doctor to tell you to change your diet. I am going to assume you eat a typical modern diet with lots of packaged and processed foods, which by the way often have gluten added as filler or emulsifier. Keep a food journal or eat a very simple whole foods diet to start off. Avoid all processed foods, and cook all your foods at home. No restaraunts. Read a lot on this site about vitamins and cross contamination (CC). The gluten-free diet can be a doctor free way of improving your health. If you do a good job of sticking with the gluten-free diet for a couple months you should have your answer. Even if you don't have celiac you will have improved your diet by avoiding a lot of preservatives and food dyes etc that are in processed foods.

[tarnalberry]

What tests did he run?

What were the results?

The tests are not a clear cut yes/no - they generally need a fair amount of interpretation.

Have you tried the diet? That is a valid, and important, test itself.

[nora-n]

Yes, as above, which tests were done, and what were the results.

Dr. Lewwy writes that the tests miss 50% of early celiac.

www.thefooddoc.com.

And, if you have asthma, then it might be almost impossible to get positive tests since asthma patients also must use steroids. Inhaled steroids also work onthe rest of the body.

Any kind of steroids will make the villi grow back, even patients with total villous atrophy on steroids will have villi growing back, and the blood tests are for the antibodies that spill over into the blood after severe tissue damage. The celiac is still there, but the tests do not pick it up.

recently there was another explanation for negative tests, and that was if someone takes b-12, it works so strong at repairing tissue and damage, that it might cause negative celiac blood tests.

[LePandaRouge]

Thanks for the replies!

Has your doctor mentioned you having an endoscopy with biopsies?

He didn't mention doing a biopsy/endoscopy. I expected him to suggest this as he initially said himself that we might require more than a blood test to get to the bottom of it, but it's like he wasn't as concerned anymore after I got the negative results.

A real good real test is if it makes you feel bad, don't do it. So you could try the gluten-free diet for a couple months and see if you start to feel different. You don't need a doctor to tell you to change your diet.

Thanks! You're right, I don't need a doctor to tell me to change my diet. So I went gluten free 3 weeks ago and am testing this by myself. It's only been 3 weeks so no major changes, but I'm noticing that my acne is clearing up!!!! I can't believe it! I started doing a lot of reading and already am a bit of a health freak so I should be alright witth he diet... my problem will be restaurants... I LOVE eating out.

Yes, as above, which tests were done, and what were the results.

Any kind of steroids will make the villi grow back

recently there was another explanation for negative tests, and that was if someone takes b-12, it works so strong at repairing tissue and damage, that it might cause negative celiac blood tests.

Sadly my doctor didn't print out the results for me... but the tests ran were to check for celiac antibodies + any vitamin deficiencies + red/white blood count + cholesterol + tyroid, liver, pancreas (etc) function. Everything came back looking fine according to my doctor. He said the red blood count and iron was a little low, but nothing dramatic.

As for steroids, I have not taken medication for asthma since I was a child. I was prescribed something now, but haven't started taking it yet.

I do take a lot of vitamin B supplements though!

----

I guess I am anxious to have an official diagnosis because my mum has had the same symptoms all her life... doctors never found what it was... and in recent years she developped neurological symptoms.. she suffered nerve dammage and was diagnosed with unexplained Cerebellar Ataxia and Fibromyalgia... and obviously I'm afraid to go down the same path. Maybe all this time she's been suffering from Celiac disease too...

[nora-n]

wow check out glutan ataxia.

Google for hadjivassiliou, and there are several papers on gluten ataxia.

20% of these patients have DQ1, whereas celiacs are mainly DQ2 (90%) or DQ8 (6%)

The DQ1 most likely will have negative celiac tests or gut biopsies but they are even more intolerant to gluten than celiacs.

[LePandaRouge]

wow check out glutan ataxia.

Google for hadjivassiliou, and there are several papers on gluten ataxia.

20% of these patients have DQ1, whereas celiacs are mainly DQ2 (90%) or DQ8 (6%)

The DQ1 most likely will have negative celiac tests or gut biopsies but they are even more intolerant to gluten than celiacs.

Ohh, that's a very interesting piece of information. Thanks a lot for that!

I think I might have just got closer to the answer.

I'm off to research this and let my mum know.

[newgfcali]

Ohh, that's a very interesting piece of information. Thanks a lot for that!

I think I might have just got closer to the answer.

I'm off to research this and let my mum know.

Panda~ I'm gluten intolerant, per Enterolab tests, and a double DQ1. I do have some GI symptoms, but my main problem is peripheral neuropathy. It's very common for DQ1's to have neurological symptoms like ataxia and neuropathy. Many have no GI symptoms at all... just the neuro problems. So maybe you and your mum are non-Celiac gluten intolerant. It's no less severe than Celiac... just different genes and different maladies caused by gluten. So if you come back negative for Celiac, you're probably NCGI. You certainly exhibit many of the symptoms, and if being gluten free makes you feel better, then you should probably keep up the diet for a good long test.