Anosmia - no sense of smell?

[HeidiParthena]

Hello! I am mom to a celiac son who is 24 years old. We have known he is celiac since he was 2.5 years old. His grandmother is also celiac, diagnosed back in the 70s when nobody even knew what the heck it was. Anyway. My son has never had a sense of smell. Ever. We know now that he was likely celiac from a VERY young age (like 2 weeks when he started being uber fussy and didn't stop until diagnosis) so that he likely had some damage. Could anosmia be part of that? I have seen a few anecdotes that may support this, but wanted to ask here. I have often suggested he get more in-depth work done to determine this loss of a sense, but since he's never had it, he can't be bothered. He is also VERY thin due to having no sense of smell and therefore very limited appetite. He is likely also somewhere on the Marfan spectrum (which would also cause that super thinness) but not enough to cause health issues (thank God!).

Sooooo we are just wondering if any other celiacs out there permanently lost their sense of smell? He attributes it to developmental issues due to his undiagnosed celiac, saying his body compensated everything else (e.g his growth was REALLY stunted when he was little and he was predicted to be 5'7" but is now 6' tall and doctor said his body compensated and caught up) and that it just gave up on his sense of smell. This is my brainy, very easy-going kid (man) making light of things as always. 

Anyone else have anosmia? Thanks!

[trents]

Welcome to the forum, Heidi!

One of the well known effects of untreated (by a gluten free diet) Celiac disease is neurological damage. An example is gluten-induced ataxia. Could this neurological damage also effect the sense of smell? Your post is the first one to report loss of sensory function that I can remember on this forum but it just made me think of that possible connection.

[Wheatwacked]

Thiamine Deficiency.  It's been reported in people with Covid and Wernicke Encephalopathy.

        Wernicke Encephalopathy From Olfactory Dysfunction After COVID-19 Infection  "She was started on parenteral thiamine replacement and had significant neurological improvement."

       Locating the cause for lost sense of smell    "The test checks the subject’s ability to recognize odors by injecting thiamine (vitamin B1) into the vein; the vitamin’s odor proliferates in the relatively enclosed cavity of the lung’s air sacs and increasing numbers of olfactory sensory neurons are stimulated over a short period of time through respiratory activity."

 

[Scott Adams]

While anosmia (loss of the sense of smell) is not a typical or common symptom of gluten ataxia or celiac disease, neurological conditions can potentially impact various sensory functions, including the sense of smell. It's important to note that any neurological condition that affects the brain and nervous system has the potential to cause a wide range of symptoms beyond its primary characteristics.

It's hard to say at this point what the exact cause of your son's anosmia might be, but has he been 100% gluten-free since he was 2.5 years old? If so, many of his gluten ataxia issue should have resolved by now, although this does not always happen.

[HeidiParthena]

Yes he has. He is one who gets ill from small amounts so has never even been tempted. In fact he will avoid eating out if he has plans the next day because as he says "it's 50/50 I will get sick" so yes, very much gluten-free since 2.5. We have always assumed (and his doc supported) that it was developmental due to all the BS his poor little body went through. It is not that he lost his sense of smell - he just never developed it? So weird.

[trents]

23 minutes ago, HeidiParthena said:

Yes he has. He is one who gets ill from small amounts so has never even been tempted. In fact he will avoid eating out if he has plans the next day because as he says "it's 50/50 I will get sick" so yes, very much gluten-free since 2.5. We have always assumed (and his doc supported) that it was developmental due to all the BS his poor little body went through. It is not that he lost his sense of smell - he just never developed it? So weird.

Do children not have a sense of smell at birth? I don't know. I'm certainly not a pediatrician. 

[knitty kitty]

@HeidiParthena,

Is your son taking any nutritional supplements?   The gluten free diet can be low in the essential B vitamins.  

I lost my sense of smell for years prior to diagnosis because I was low in Thiamine Vitamin B 1.  I took Benfotiamine (a form of Thiamine) and B Complex.  My sense of smell returned when my Thiamine deficiency was corrected.  Vitamin C and zinc may help, too.  

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

[Wheatwacked]

Does he get sick alot?

 

[jan7]

Hi, I lost my sense of smell completely as a consequence of late onset Celiac disease at 56 - I've regained a modicum of my original sense after years of a strict gluten-free diet but still can't smell many things (especially bad smells as it happens!) my feeling is that B vitamins are important but I'm not sure which ones...I'd guess b12 and b1

[trents]

The B-vitamins support one another as a group and it is wisest to supplement the whole spectrum of B's instead of targeting just one. They need to be in balance with each other. So, a B-complex supplement is best IMO.

[jan7]

I do agree with that idea in general, however, I was severely deficient in b12 due to celiac which caused peripheral neuropathy ... So I needed high doses of b12 - If I'd taken similarly high doses of b6 that could actually have caused further neuropathy 

[trents]

36 minutes ago, jan7 said:

I do agree with that idea in general, however, I was severely deficient in b12 due to celiac which caused peripheral neuropathy ... So I needed high doses of b12 - If I'd taken similarly high doses of b6 that could actually have caused further neuropathy 

Why do you say that?

[knitty kitty]

There's several B vitamins which if deficient can cause neuropathy.  B12 deficiency can cause neuropathy as can deficiencies in Thiamine B1, Niacin B 3, Pyridoxine B6, and Folate B 9.  

Yes, excessive Pyridoxine B6 can cause neuropathy if there's an excessive amount from supplementing, but not from dietary sources.  

Zinc is also important to the sense of smell.  People who lost their sense of smell after having Covid were found to be deficient in Zinc.  Zinc is important to the immune system, along with Thiamine.  

You can take a B Complex, but if afraid of too much B 6 Pyridoxine included in the complex, you can take the other B vitamins separately.  

Usually in Celiac Disease, one becomes deficient in the B vitamins across the board.  Because the B vitamins interact with each other, it's better to supplement them all together than just one at a time.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8435108/

https://pubmed.ncbi.nlm.nih.gov/19154566/

[trents]

Here's the NatureMade B-complex product I use with percentages RMDA percentages I get it at Costco.

[knitty kitty]

Thiamine Mononitrate is not utilized very well by the body.  Only about twenty percent of that big dose will actually get used.  

Thiamine Mononitrate is shelf-stable, meaning it won't breakdown while sitting in a bottle on a shelf.  It also means that thiamine mononitrate is difficult for the body to break down and use, too.  

A better, more useable form of Thiamine is thiamine hydrochloride or Benfotiamine.  

Taking both Benfotiamine and the B Complex will be fine.  

[Beverage]

I lost my sense of smell years ago, it was what made me try a naturopathic doctor in 2015, and he diagnosed me with Celiacs. It's come back from time to time, some supplements seemed to help, like thiamine and K2, but then it faded away again. Since it came back occasionally, it gave me hope that it wasn't nerve damage.  Weirdly, it came back like gang busters when I got covid, then faded away after about 4 months.

Earlier this year, my sinuses got significantly worse, completely blocked after inhaling black dust, possibly mold, when I was tearing off upholstery from some antique chairs.  Couldn't breathe, asthma severe, bad cough, couldn't sleep. I called for an appointment with my old ENT, but it was over a month out.

In the meantime, I dug out my blood test results from when I was diagnosed with Celiacs, and saw that I tested pretty high on dairy. All the attention went to Celiacs at the time, then I had to go to a different doc bcuz of my insurance, so the dairy issue was forgotten by me.   In the meantime they did a CT scan.

While waiting for my appointment, I cut out dairy starting in June, and my sinuses got a little better, much less swollen feeling, my face actually looked less swollen, and I was getting a few tiny sniffs of smelling.  Then I got to my appointment, and the ENT said I had a huge polyp, and CT scan showed lots of swelling, so he wanted me to try Dupixent.

In June, within 24 hours of the first Dupixent shot, my sense of smell returned.  Dupixent is taken every 2 weeks, but the injector malfunctioned on my 2nd shot and I only got about 1/4 of the dose, but I can still smell everything.  Dupixent is a "biologic", not a steroid, that blocks some inflammatory markers (IL4 & Il13), so that is why I believe it worked for me.

So this is a long story, but for me, it seemed to be a combination that helped, cutting out dairy and the Dupixent. I have no idea if it will last, but this does feel different. But for your son, possibly something to explore is if he also has some food for other sensitivities that may be contributing, or pursuing a good ENT, there are new options available from even a few years ago.  I was undiagnosed with Celiacs for probably decades, and I got lucky with this naturopathic doctor (MD) in 2015 that he figured it out rather quickly, and identified these other issues.