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Vertigo/Dizziness & Celiac

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As always, I am still stranded in diagnosis limbo, but what propelled me back into seriously taking another look into a possibility of being positive for celiac was a sudden and severe attack of vertigo that woke me up one night in late December, followed by a couple of weeks of sporadic dizziness, vomiting and nausea.  This happened to me once before in this same way, about 14 years ago, and at that time I also considered celiac (since my mother was celiac and since I have the gene) and couldn't get a diagnosis either because I never seem to get a clearly positive blood test.  The test I took in January was after about 8 days gluten free, but the company (imaware) said that shouldn't affect results too much since I had been eating gluten for months before that.  Again a negative result, with the test stating a "5% less likely" result, or 5-25% chance of having celiac.  Pretty vague.  Not sure how to interpret that other than not positive.  However,  I just read that about 10% of people may test negative for celiac yet still have it.  So I suppose that's still a possibility.  Anyhow, I just came across this article on vertigo and gluten, published in October 2020, and found it to be interesting.  Part of my puzzle, at the very least.

https://www.verywellhealth.com/gluten-and-vertigo-562319

Meanwhile, I've just finished 7 weeks gluten free and also dairy free, feeling a great deal better but not yet 100%, whatever 100% may be.  My neuropathy is definitely improved but nowhere near gone.  No more vertigo episodes, and dizziness has been gone for about the last 5 weeks.  No more nausea, abdominal pain or any of that.  Sleeping better.  No headaches.  Bloating gone.  All in all I see good improvement, although the digestive system could still be better.  There seem to be a great many foods I should avoid, most especially sugar and starches as well as certain veggies like cauliflower & broccoli in particular.  I don't do well with any of the gluten free crackers, cookies etc due to the starch content, so I need to entirely stay away from that junk.  I actually got WORSE joint pain (wrists, thumbs mostly) for awhile after stopping gluten, but I think that is again calming down and I hope it goes away.  I don't know why it would get worse once gluten and dairy were gone, seems odd as I had always figured they influenced it.  There are always more questions than answers with this.

I still wish I could get some sort of clear diagnosis, because if it's not celiac then I have to figure out what my problem actually is.  From what I've read lately, I'm thinking if I don't have celiac, then it must be gluten sensitivity (which is said to be more severe if you have the HLA-DQ2 or 8 genes), and of course NCGS is another giant black hole of questions with no answers and no testing to properly diagnose it.

CAROLE

-------------

Enterolab 1/2006 - IgA & tTg Positive

DQ2-0201 (celiac) + DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes, both kids have a celiac gene.

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I still think that being gluten-free 8 days before your blood test can definitely create a false negative, because it can put you below the cut-off line that would make your results positive. In theory, each day you go gluten-free your blood antibodies that are created when you eat gluten and are sensitive to it would drop, but it can take a long time for them to go really low, but this depends greatly from person to person.

Given that you're seeing some positive changes in many different areas it does sound like, at the very least, you are gluten sensitive, which affects ~12% of the population. I do hope they get a proper test for this soon, and researchers are working on this now.

If your arthritis is related to your gluten consumption, then it could take a lot longer than 8 days for you to notice positive changes, and this is also true for many other symptoms.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Gluten containing products are required by law to be enriched with minimal amounts of B vitamins and minerals to replace those lost during processing.  Since you have switched to a gluten free diet, you have lost that source of vitamins.  Poor digestion and absorption can cause nutritional deficiencies quickly. 

Deficiencies in Thiamine, niacin, pyridoxine, Cobalamine and magnesium can cause neuropathy.  

I had problems with vitamin deficiencies and had horrendous neuropathy which have resolved with supplementation of these vitamins and magnesium.

Nutritional Neuropathies

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/#!po=59.0000

Hope this helps!

P.S.   Correcting these deficiencies will help with the vertigo, too.  It's a neuropathy in the ear.  I had vertigo, too.  

Edited by knitty kitty
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