Celiac and nerve issues?: I was... - Gluten Free Guerr...

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Celiac and nerve issues?

rozee1972
rozee1972

I was diagnosed three years ago. I am 48 and have since noticed a plethora of other issues that seem to have coincided with my celiac diagnosis. The two most noticeable are weird nerve issues - shooting pains and such along with weird feelings/ sensations in my body and head. Also, my skin on my face is terrible- never had issues with my skin or complexion but now have dermatitis, and mild rosacea. Anyone experience these things with celiacs? I just feel like doctors are not trained or knowledgeable enough about celiacs to connect all these dots and it’s beyond frustrating.(I’m in the US) I also suffer from hypothyroidism, GERD, prediabetes, Cholesterol, and anxiety. I am sick of pumping my body full of meds. I’m also on the low end with my hemoglobin levels despite the fact that I no longer get a period and I follow a GF diet. I’m so frustrated and depressed to be honest. Any input is greatly appreciated.

30 Replies
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Hi, could hormonal fluctuation be part of the issue also?

Nuerological symptoms are associated with untreated coeliac, but if you are following gluten free diet fully then those should resolve.

How 'gluten free' is your gluten free diet, i.e. how stringently do you follow the diet?

Also, sounds like a lot of meds might be causing 'system overload' and becoming toxic and showing on your skin.

Have you considered visiting a dietician who specialises in helping individuals with complex health conditions that may be related to food/gut damage?

rozee1972
rozee1972 in reply to Mise

Maybe hormones are contributing? Could that be? I had a hysterectomy when my daughter was born 20 years ago so I have no idea if I’m experiencing menopause symptoms or not ( I still have my ovaries) that’s interesting though. Could hormones affect the nervous system?

Everything I eat is ‘gluten free’ as far as I know. I’m not very careful about cross contamination however. I am going to be now!

Your theory of system overload makes sense. It’s just so difficult to find someone here who is an expert in all things celiac. I guess I need to investigate a bit more. Any other input is greatly appreciated!! Thanks.

Mise
Mise in reply to rozee1972

Hormones - one for the doctors, but I have heard women can have problems with skin conditions flairing up in relation to hormone fluctuations. In terms of nerve pains - honestly not sure, but people do say they get dizzy heads, etc. Worth checking out.

Gluten free diet - as posted elsewhere on here, I've had to revise how safe gluten free commercial products are and have to switch to whole food diet with no grains or sugar. Also looking at lectins, another protein in some foods. There is the codex level of 20ppm which you also have in US - this may still be too much for some people with coeliac. Worth following/checking out Gluten Free Watchdog (glutenfreewatchdog.org) who are US-based.

Toxic overload - all meds will have side effects and often doctors fail to check the potential interactions between drugs when prescribing new ones. If possible, worth asking for a proper meds review from your doctor/a doctor to see if any are at risk of interactions.

rozee1972
rozee1972 in reply to Mise

Lots to think about- which I will. Thanks for taking the time to talk! I’m just so frustrated and you would think three years in my frustration would dissipate, but it’s only gotten worse.

rozee1972
rozee1972 in reply to Mise

Also, has there been any info out out there regarding low end of normal hemoglobin levels? I’m not anemic but my numbers are always at the low end of normal. I don’t take a supplement but I may talk to my dr about it.

Mise
Mise in reply to rozee1972

Low vitamin/mineral levels are common for coeliac, and supplementation is often required in recovery. B12, Vitamin D and Iron are the most common. Ferritin levels are also important and may be low. A blood test will show if you are low in anything, but no harm in doing a good quality iron/multivamin supplement - just make sure to choose one that is gluten free with no dicey ingredients.

rozee1972
rozee1972 in reply to Mise

Thanks, Mise. I do take a multi, vitamin c, vitamin d, and vitamin e. I’m considering taking iron but I’m not sure if I can just take it without my dr knowing. She had me on iron for a year following my diagnosis 2017-2018. My levels were good then. Since 2018 my levels have gone down slowly so that leads me to believe my diet doesn’t contain enough iron and/or celiac is depleting me even on gf diet/ OR the meds I’m on are anti iron absorbing (omeprazole/levothyroxine/metformin) or all of the above.) this is where my frustration grows. I feel like I need to take control and to heck with my drs bc they are not really good for anything other than ordering tests / labs. Sorry. I’m clearly on a rant!

Do you know how much iron supplementation is good?

Mise
Mise in reply to rozee1972

Yes, get the frustration. I'm not very knowledgeable on iron levels/best ways to supplement, but there are some other threads on here that do discuss that topic. Do you have contact with any celiac societies/charities for support?

rozee1972
rozee1972 in reply to Mise

I only visit celiac.org now and again. I guess that is something to do soon!

Ukulelelady1
Ukulelelady1 in reply to Mise

If you do take iron supplements you need to get regular blood tests as too much iron is as bad for you as too little, so that type advice needs to come from a doctor as they need to keep a check on the levels. It obviously won’t be an issue in the short term, but you mustn’t take iron long term without advice from a doctor. I’m only mentioning this as I don’t think enough people realise it.

Mise
Mise in reply to Ukulelelady1

The challenge with doctors testing for iron levels is that they don't test (in UK at least) for ferritin levels, and this is what individuals are most frequently low on. Also iron levels are measured on a 'mean' scale of what is considerd normal so you could actually be at the very lowest level of what is considerd ok, but still be told you are 'normal'. Rule of thumb is breaking nails, hair loss, heart palpitations, pale insides on eyelids, shortness of breath on exertion and low energy can be down to low iron and also B12.

Ukulelelady1
Ukulelelady1 in reply to Mise

They do test ferritin levels! That was what led to my diagnosis of coeliac disease, so maybe in your experience, they didn’t test, but it’s not always the case.

Mise
Mise in reply to Ukulelelady1

Doh - my error! Apologies. Seem to have mixed my facts up.....

Dermatitis is very common with celiac. Sometimes it's the only symptom. I've read sometimes celiac patients have to give up dairy or soy, or both before they get better. I'm 28 and got diagnosed with hypothyroidism last year. Ive also dealt with anxiety/depression. I have a lot of the symptoms of celiac so I just decided to go gluten free anyway and I've seen improvements. I think it could take a long time to fully heal but I'm hopeful. Just curious have you had any dental/mouth issues like canker sores or transclusent teeth? I've had both of those and they are common with celiac.

Yes! Before I was diagnosed I suffered from canker sores in my mouth frequently. Since going gf I have noticed a significant decrease.

If translucent teeth means your teeth have thinned or it’s like you can see they have almost thinned , yes I have noticed that but attributed it to aging not even thinking it could be related!

Yea it's like when the tips of your teeth are almost see through. I hope your symptoms get better soon, celiac can be dangerous when left untreated and it affects the whole body. I've read that 90% of celiacs are undiagnosed so who knows how long you could've been dealing with celiac before you were diagnosed.

Also, from what I’ve heard hypo and celiacs often go hand in hand.

I really think that you should have your B12 serum blood tested. Your nerve symptoms do suggest that you are deficient in this vitamin. Please research pernicious anemia.

All the best.

rozee1972
rozee1972 in reply to jointpain

Thank you, joint pain ! I will certainly research that. Do you know if it possible that, even tho I have been gf for three years, the damage to my nerves done before my diagnosis is still healing or will continue to heal?

jointpain
jointpain in reply to rozee1972

My own experience is the nerve damage and digestion problems occurred due to eating gluten for many years. Once my digestive system was unable to take lactose due to damage to the villi in the ileum my B12 dropped off a cliff, causing real problems to my nervous system. Since being gf and injecting B12 things have got much better over two years later. My villi has repaired I can eat and drink milk products, though still need B12 and stay gf. Virtually all other gastric problems are resolved or at least manageable.

It's a long process and not fixed overnight. Far from it.

I wish you all the best. I am 64 and for over forty years had terrible gut problems. My GPs over the years have proved to be of very little help.

Mise
Mise in reply to jointpain

The level of medical negligence in recognising and diagnosing coeliac is off the scale. For any other illness this would big news and outcry. 90% not getting diagnosis, and many having to suffer for decades before any tests for coeliac is just not acceptable. This, from my view, is a massive failing on part of CUK - this needs to be a frontline major campaign for them, but is not nor does it ever seem to be. GPs also need to look to themselves and their own profession for fact they are without knowledge on a common, prevalent and highly impactful illness.

rozee1972
rozee1972 in reply to Mise

I completely agree!! Here, in the US, it is the same. I feel like I can’t find a single doctor or medical professional who is knowledgeable about celiacs. I am beyond frustrated. I feel like I’m doing research and finding things out to bring back to my dr, when it should be the other way around. She and my gastroenterologist have limited, if any, knowledge about celiacs and it’s really disheartening, but more so frustrating and unacceptable. 😩

Mise
Mise in reply to rozee1972

Something is very wrong somewhere in our respective health professions and coeliac/celiac societies. It should not be this way in 2020.

Cooper27
Cooper27 in reply to rozee1972

Sometimes the damage caused by vitamin B12 deficiency is not reversible (not meaning that it's the case with you), so if the B12 theory is correct, you might find at least a small amount of damage is permanent.

As you are in the US, have a look for books /You tube by Dr Alessio Fasano. He is a specialist on the subject of coeliac disease.

It is possible to have nerve problems because of gluten without having low levels of B12.

rozee1972
rozee1972 in reply to Penel

Thanks, Penel! Do you know if it is possible to have low b-12 even on a gf diet?

I’m fairly similar to you in that I have nerve damage (and take amitriptyline for the pain), I also have diabetes and a severely under active thyroid, which did improve a little after I was diagnosed with coeliac disease (which was a long time), because my gut is now absorbing my thyroid medication better now). My ferritin levels were very low too and had to take iron from the doctor - please see my note above though, as you need to be careful with iron. I had a hysterectomy about 18 years ago, so mine was also nothing to do with periods. I also had my ovaries removed, so immediately went through the menopause, and on top of that almost 6 weeks to the day after my hysterectomy, started with my first symptoms of fibromyalgia. I also had low vitamin D levels and was diagnosed with osteopenia, which is a pre-curser to osteoporosis. I was prescribed vitamin D and calcium tablets and have to have a DEXA scan every few years to check my bone density. (I’m intolerant to dairy so drink fortified non-dairy milk). I suffer with GERD too. So my symptoms are similar to yours.

Wow- Your symptoms are very similar! Do you find yourself deficient in any other areas ?

Not deficient exactly, I have eczema, which is classed as irritant contact dermatitis, and anxiety. I also have a lot of food intolerances, which I’ve being doing the low FODmap diet for, These intolerances became apparent after my gluten free and dairy free diet became established. I must admit it’s very strange how we have so many common symptoms.

Check out GABA and inositol also vitamin b 12 which helps absorb iron

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