Weak positive?

[metalhead]

Hey I am new here but I have been reading loads of posts trying to figure out if gluten is the cause of my ailments for so long. My doctor says these values are insignificant and show I am Celiac negative and have no abnormal reaction to gluten. This testing was performed after 1 week of being entirely gluten free.

My symptoms: mostly neurological, shaky eyes, migraines, dizzy when looking up/down, lack of concentration/memory, intrusive thoughts, depressive mood, strange sensations in my head, shaky limbs, tremor attacks, hands had intense tingling and was unable to move them for a short period, insomnia, always feeling sick with no culprit, sensations of movement under my skin, feeling incredibly faint and lightheaded, random pains that come and go, I had 3 times in the past year where there was a significant amount of fatty material in my stool, very pruny fingers after only minutes in shower

Testing that's been done and shown negative: brain MRI, every thyroid test they offer, routine CBCs and CMPs, ENT specialist, full autoimmune workup from rheumatologist, multiple EKGs and echocardiogram, Lyme disease, IRON, multiple physical exams, EPLEY maneuvers with no relief, eye exams

Results that were abnormal: had a low vitamin D, neurologist confirmed I have vertigo with eye test but could not find cause, low potassium at the ER that was corrected

I tried being gluten free on my own as a trial, after 1 week I have noticed significant improvement in vision, far less fainty, general well being improved but this comes and goes, had a day that all my symptoms actually disappeared besides some brain fog and I was the happiest Ive been in years (only for them to return later that evening). At this point I have noticed improvements but my brain has tons of pressure and I feel quite out of it, laying down flat seems to help these symptoms some. I took a B12 randomly one day and it helped a lot but briefly.

I really appreciate any insight you all can give me as I feel exhausted as is my family trying to figure out what is causing this. All my doctors have essentially given up on me and tell me I have depression and will need to learn to cope with these symptoms, to seek therapy, and take anti-depressants. I nearly fainted sitting on the chair in a recent visit and the doctor told me I need to get sunlight and try to stop being so depressed. This testing was done at my request but according to the doctor shows I am not at all celiac.

Thank you so much for your help

[Scott Adams]

To me both tests look positive, unless I am missing something here, and given the fact that you were 100% gluten-free for at least a week leading up to the test, they likely would have been even higher had you continued eating gluten. I welcome @trents and @GFinDC to weigh in on your results.

Neurological symptoms are common in celiac disease, and here are article on this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

 

[trents]

Ditto to what Scott said. It is unfortunate that you were already eating gluten-free before the tests as it likely had some moderating effects on the results. The rule of thumb before serum antibody testing is to be consuming at least the equivalent of one slice of wheat bread for 8 weeks. And you have a number of celiac symptoms.

[RMJ]

It looks like two positive tests! Luckily, the treatment for celiac disease (strict gluten free diet) doesn’t require a doctor. It sounds like it would be worth trying a strict gluten free diet for six months - knowing that symptoms may go up and down for a while.

[metalhead]

I really appreciate your responses! After seeing the results I felt it was obvious I had the antibodies even if it was weak and despite what my doctor has said. Perhaps I can repeat after eating gluten regularly again and see my levels. Thank you guys again and for providing more information 

[GFinDC]

Hi metalhead,

I agree that you may have celiac disease.  Your tests are positive even if the results are low positive.  It looks like you didn't get the full celiac antibodies test though?  The DGP IgG, DGP IgA, serum IgA  and EMA results are missing?  Perhaps those tests weren't done?  We have had people on the forum who only tested positive on IgG antibodies before.  So if that one test, DGP IgG wasn't done, they would not have been diagnosed.

Low vitamin D is typical for some people with celiac.  Also low B vitamins.  Nature Made is a good brand of vitamins to take, and not real $$$.  There are some minerals that tend to be low also, like magnesium, copper and zinc.  You may feel better if you can get a good B complex and a multivitamin and mineral complex.  B-12 is related to nerve health.  

Celiac disease can cause damage to the villi lining of the small intestine.  That damage prevents efficient absorption of nutrients.  So celiacs can be low on various vitamins and minerals.  Taking supplements can help, but with the gut damage they may not be well absorbed.

The gotcha is that without proper nutrient levels it is hard for the body to repair and maintain it's tissues.

 

[Redhed]

19 hours ago, metalhead said:

Hey I am new here but I have been reading loads of posts trying to figure out if gluten is the cause of my ailments for so long. My doctor says these values are insignificant and show I am Celiac negative and have no abnormal reaction to gluten. This testing was performed after 1 week of being entirely gluten free.

My symptoms: mostly neurological, shaky eyes, migraines, dizzy when looking up/down, lack of concentration/memory, intrusive thoughts, depressive mood, strange sensations in my head, shaky limbs, tremor attacks, hands had intense tingling and was unable to move them for a short period, insomnia, always feeling sick with no culprit, sensations of movement under my skin, feeling incredibly faint and lightheaded, random pains that come and go, I had 3 times in the past year where there was a significant amount of fatty material in my stool, very pruny fingers after only minutes in shower

Testing that's been done and shown negative: brain MRI, every thyroid test they offer, routine CBCs and CMPs, ENT specialist, full autoimmune workup from rheumatologist, multiple EKGs and echocardiogram, Lyme disease, IRON, multiple physical exams, EPLEY maneuvers with no relief, eye exams

Results that were abnormal: had a low vitamin D, neurologist confirmed I have vertigo with eye test but could not find cause, low potassium at the ER that was corrected

My symptoms were almost identical to yours... dizziness, vertigo, stomach problems, concentration problems, virtually non-existent vitamin D levels and very low (but still in normal range) for most other vitamins. I had a slightly "higher" positive blood test result than you, but doctor still said it was a weak positive. Similar to you, I did the vestibular therapy (epley maneuvers), neuro workup, vision correction, etc etc, and loads of other testing which was all normal. Eventually, got the endoscopy done and it came back positive for celiac disease. Ended up on some super high-dose vitamin supplements for awhile, but now I just take a multi-vitamin and extra vit D and I test in the normal ranges every time.

The ONLY thing that has helped has been the gluten-free diet. To be honest, even if they told me I did not have celiac disease, I would continue on the gluten-free diet because I feel normal again. I don't stare into space with glazed eyes or have dizzy spells anymore. It's like night and day. If it works for you and you feel better, that's all the evidence you need.

If you feel you do want confirmatory testing, beg for the endoscopy. I also have GERD and that was how I eventually got it approved by insurance, but they "also" took biopsies for celiac...luckily they did because even the GERD has partially resolved since the diagnosis.