Possible Celiac

[Steve3005]

Hi, I've just signed up and would like some thoughts on my condition. Sorry if I ramble on a bit it's been a tough year. 

All my life I've struggled with heartburn and digestive issues and I noticed this would be worse after things like toast or cereals. So I've always considered a gluten allergy but symptoms never improved after going gluten free. I also took a test a few years back which said negative for celiac. However this was an in the post diy test so who knows the reliability? 

About 18 months ago I went the docs with what was to be the beginning of a host of neurological complaints. First I was noticing my hands not working properly. Fine Motor skills seemed harder (but never really progressed). Gradually I started getting muscle twitches all over, nerve pain in hands and feet, muscles can fatigue easily, then came swallowing difficulties where food gets stuck in throat. Mainly dry crumbly food. I've been referred to a neurologist to be tested for scary things which is causing a lot of stress. 

Up until a few weeks back I was managing but then in work I was getting dizzy spells. Then one day i got really bad. I could barely walk my heart was racing and I ended up in hospital where they found heart rhythm issues but they could be a red herring. After monitoring the cardiologist is happy my heart is healthy despite these findings. 

Since then I've had lots of dizzy spells followed by feeling terrible for hours after. Last week I noticed that it was worse after eating so I cut out gluten and within a couple of days I thought I was better. Loads of energy, dizziness gone but still light Headed. I did loads of research on what I can't eat, food labels etc. However, on Monday I went back to work and started feeling bad again. By Tuesday I was fully back to being ill and dizzy. I can't think of what I could have eaten but my stomach was so bloated and now I'm on the toilet (sorry) every time I try and eat. Not diarrhoea but loose enough. 

So my question is does any of this sound familiar in any way? If so can it really be so bad that it can attack your nervous system? I need to get tested but doctors appointments are hard to get at the moment and my neurology appointment is months away. So stressful. It's most likely not celiac but it does crop up on Google every time I investigate symptoms. 

Thanks everyone

Steve

[GFinDC]

Hi Steve,

Sure sounds like celiac to me.  You should not stop eating gluten before getting tested.  All celiac testing depends on the person having been on a gluten diet for a while.

One of the problems with celiac is it causes malabsorption of nutrients.  So we may not get the vitamins and minerals from our food that our body needs to function and heal.  Your doctor can test you for nutrient deficiencies.

[Steve3005]

Thanks for the reply, 

I have been tested for deficiencies and all bloods came back ok for vitamins, thyroid, anemia etc. I've also had a brain CT to rule out a tumor. I'm thinking about going private to a neurologist and mentioning possible gluten ataxia/ neuropathy. It certainly sounds plausible considering I've always suspected gluten as the cause of digestion issues before all this happened. Could do with an MRI. Anyway,... 

So, I've been gluten free for 2 weeks is that too long to show in a blood test now? I'm worried about eating it because it gets really severe. (if that is the cause) and how long do I need to continue eating gluten for before the test? 

Thanks again

 

[cyclinglady]

Talk with your doctors, but all celiac disease testing does require you to be on gluten.  Since you have only been off for two weeks (and odds are you have still consumed gluten unknowingly since the diet has a steep learning curve), you can still get tested.  I am not a doctor, but I would go for it.  I would also insist or even pay for the full celiac panel (TTG, DGP, EMA and get tested for Immunoglobulin A (IgA) levels to see of you are IgA deficient).  (In case you are IgA deficient, any celiac IgA test would not work).  You would have to do IgG testing.

Healthcare providers often just run the very good, but not perfect TTG tests.  This saves money.  I suspect you are in in the UK or Canada since you mention “private”.  Good for screening, but it does not catch all celiacs like me.  I only had a positive DGP IgA on the complete panel, yet intestinal biopsies revealed moderate to severe patches of damage.  

So, get back on gluten if you want to pursue a celiac disease diagnosis.  A slice of bread a day (or equivalent) should be enough for a few days, to maintain the antibodies in your blood stream.  Some celiacs can heal in just two weeks.  At least that is the lab theory or knowledge, but in real life, it is hard to avoid gluten.  Again, you have to be on gluten, so if you want to avoid getting sicker, get that test fast.  We have walk-in labs here in the US in many states.  Maybe you have that option?  

Gluten ataxia is rare.  Rare in that most doctors are not aware of it.  There is a doctor in the UK who specializes in it.  He is the world’s leading expert.  Sheffield, is the town I think.  In the US, there is not as much support, but a celiac research center like Mayo or University of Chicago) would be best.   If you do have gluten ataxia you must be super, super strict.  Healing the brain and nerves is not as easy as healing the gut.  Obviously, we all know that otherwise no one would have to live in a wheelchair if we could easily fix nerves and the brain.  

There is a test for gluten ataxia.  I think it is the TTG 6, but that test is hard to get.  But it could be critical since someone with gluten ataxia could fail the traditional celiac tests.  

https://www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/neurological-conditions/

I hope this helps.  Whatever you do, keep researching and advocating for yourself! 

Edited October 24, 2019 by cyclinglady

[Steve3005]

Thanks for all that! Lots of good information there and plenty to think about. I'll keep the thread updated if I manage to get some answers. 

Take care 

Steve 

[anjum]

On 10/24/2019 at 6:22 AM, Steve3005 said:

Hi, I've just signed up and would like some thoughts on my condition. Sorry if I ramble on a bit it's been a tough year. 

All my life I've struggled with heartburn and digestive issues and I noticed this would be worse after things like toast or cereals. So I've always considered a gluten allergy but symptoms never improved after going gluten free. I also took a test a few years back which said negative for celiac. However this was an in the post diy test so who knows the reliability? 

About 18 months ago I went the docs with what was to be the beginning of a host of neurological complaints. First I was noticing my hands not working properly. Fine Motor skills seemed harder (but never really progressed). Gradually I started getting muscle twitches all over, nerve pain in hands and feet, muscles can fatigue easily, then came swallowing difficulties where food gets stuck in throat. Mainly dry crumbly food. I've been referred to a neurologist to be tested for scary things which is causing a lot of stress. 

Up until a few weeks back I was managing but then in work I was getting dizzy spells. Then one day i got really bad. I could barely walk my heart was racing and I ended up in hospital where they found heart rhythm issues but they could be a red herring. After monitoring the cardiologist is happy my heart is healthy despite these findings. 

Since then I've had lots of dizzy spells followed by feeling terrible for hours after. Last week I noticed that it was worse after eating so I cut out gluten and within a couple of days I thought I was better. Loads of energy, dizziness gone but still light Headed. I did loads of research on what I can't eat, food labels etc. However, on Monday I went back to work and started feeling bad again. By Tuesday I was fully back to being ill and dizzy. I can't think of what I could have eaten but my stomach was so bloated and now I'm on the toilet (sorry) every time I try and eat. Not diarrhoea but loose enough. 

So my question is does any of this sound familiar in any way? If so can it really be so bad that it can attack your nervous system? I need to get tested but doctors appointments are hard to get at the moment and my neurology appointment is months away. So stressful. It's most likely not celiac but it does crop up on Google every time I investigate symptoms. 

Thanks everyone

Steve

HI Steve,

I would definitely see a doc perhaps a gastrointrogist. Try to eliminate one food at a time from your diet and see what happens. You might be dealing with two separate issues.Dizzy spells are more of neuro issue and diarrhoea is more food related. Are you lactose intolerant? try to notice after what kind of food you eat that your stomach behaves this way, keep a food journal and write everything down. You might have wheat sensitivity, dont eat a wheat based things for two days and see hoe you feel.

[TD16]

HI Steve,

You sound just like me 20 years ago. I was so sick with diarrhea etc. and they thought I had MS due to my neurological symptoms. I went through every neurological test including an MRI and they couldn't find a thing. I finally tested positive for Celiac and using the internet I concluded I also had gluten ataxia. After eliminating gluten my neurological symptoms started to go away but it took about 2 years to feel 100%. Even now, when I accidentally ingest gluten, a few gluten ataxia symptoms show up and take a few days to go away. It is a little unnerving as I know what it is doing to my brain as well. I have not done the test for gluten ataxia and never will but that is my choice, but perhaps that is something you do. 

Hope that helps and know you are not alone. Keep persevering until you find the answers!

[Steve3005]

It's very interesting you had similar issues many years ago. I've got a neurology appointment this week, I've decided to go private, and my referal from my GP suggests MS to be looked at. worrying. 

I started on gluten again yesterday as I've ordered a test and felt OK mostly. Today though I'm definitly having dizzy spells more. Feels a bit like I've spun around a few times then tried to walk. My speech is slightly clumsy and so are my hands. It's all so confusing. 

Hopefully some answers soon. 

Thanks for your replies everyone

Steve 

[Awol cast iron stomach]

On 10/24/2019 at 6:22 AM, Steve3005 said:

Hi, I've just signed up and would like some thoughts on my condition. Sorry if I ramble on a bit it's been a tough year

About 18 months ago I went the docs with what was to be the beginning of a host of neurological complaints. First I was noticing my hands not working properly. Fine Motor skills seemed harder (but never really progressed). Gradually I started getting muscle twitches all over, nerve pain in hands and feet, muscles can fatigue easily, then came swallowing difficulties where food gets stuck in throat. Mainly dry crumbly food. I've been referred to a neurologist to be tested for scary things which is causing a lot of stress. 

Up until a few weeks back I was managing but then in work I was getting dizzy spells. Then one day i got really bad. I could barely walk my heart was racing and I ended up in hospital where they found heart rhythm issues but they could be a red herring. After monitoring the cardiologist is happy my heart is healthy despite these findings. 

Since then I've had lots of dizzy spells followed by feeling terrible for hours after. Last week I noticed that it was worse after eating so I cut out gluten and within a couple of days I thought I was better. Loads of energy, dizziness gone but still light Headed. I did loads of research on what I can't eat, food labels etc. However, on Monday I went back to work and started feeling bad again. By Tuesday I was fully back to being ill and dizzy. I can't think of what I could have eaten but my stomach was so bloated and now I'm on the toilet (sorry) every time I try and eat. Not diarrhoea but loose enough. 

So my question is does any of this sound familiar in any way? If so can it really be so bad that it can attack your nervous system? I need to get tested but doctors appointments are hard to get at the moment and my neurology appointment is months away. So stressful. It's most likely not celiac but it does crop up on Google every time I investigate symptoms. 

Thanks everyone

Steve

Welcome and ramble on...

muscle twitches all over,( check) nerve pain in hands and feet, (check) muscles can fatigue easily,(check ache often in certain areas with gluten or after cc) 

then came swallowing difficulties where food gets stuck in throat ( check- happened during my gluten challenge , but thankfully diligently gluten-free this was not an issue after.

I will add I lost feelings in my left upper arm , big toes, then feet and that's when I first gave up gluten. 

These are mostly gone currently as I am strictly and likely bordering on "paranoid" to stay /be gluten-free. 

Since my challenge when exposed to cc and the weeks after these symptoms come flooding back, I  fall off curbs ( my husband always will walk on the side closest to curbs if I'm symptomatic) my cerebellum can feel inflamed, I get neuropathy numbing and sometimes shooting burning pain in same limb. One side numb other shooting pain. It tends to be worst at night.

So yes you do sound as if you need to look into this further. I was diagnosed IBS for ( by symptoms only) 20 plus years, but now I realize it was always this. At 28 I was concerned I was getting symptoms of MS. I was tested for celiac, AI's, food allergies, and  a food intolerance diet 3 years ago. 

For bloating it helped to go gluten-free for sure. I still struggle with digestive issues as I am now finding I have symptoms of post pradinal  hypotension.

Which technically is cardiovascular , but likely the cns- ans ties in. I have to ensure I get enough protein, and electrolytes, and wear compression socks at work. I suspect the dysfunction  is from  nerve issues from having undiagnosed celiac so long  (possible) combined with the paternal side of my family that often has (good blood pressure/ low) that is also the likely celiac side (paternal cousin is celiac). 

Now that my diet contains few processed fortified foods etc. I have corn and cow milk intolerance too . I find to work full time I must look after not only the celiac/DH/ and my vitamin d, B's and magnesium, but my protein and electrolytes too to keep my unique homeostasis in balance.

I did try acupuncture for a time (2 years) while it did help for a time heal and get symptoms under control. This past summer I saw an Acupuncturist that specialized in nerve issues , but that treatment actually exacerbated things for my body so I stopped acupuncture altogether.

In general most nerve issues are under control, but the nerve/ blood vessel autonomic post pradinal/ POTS like flushing symptoms are things  I am learning to accept and manage. I have had flushing my whole life. Some flushing was due to food intolerance and immune (prostraglandins)and it also ties in to low blood pressure too. This flushing code has taken 45 years to figure out it is based on 3 components. ?

Best wishes on your journey on uncovering your symptoms of concern.

Edited October 29, 2019 by Awol cast iron stomach
Typos

[Steve3005]

57 minutes ago, Awol cast iron stomach said:

Welcome and ramble on...

muscle twitches all over,( check) nerve pain in hands and feet, (check) muscles can fatigue easily,(check ache often in certain areas with gluten or after cc) 

then came swallowing difficulties where food gets stuck in throat ( check- happened during my gluten challenge , but thankfully diligently gluten-free this was not an issue after.

I will add I lost feelings in my left upper arm , big toes, then feet and that's when I first gave up gluten. 

These are mostly gone currently as I am strictly and likely bordering on "paranoid" to stay /be gluten-free. 

Since my challenge when exposed to cc and the weeks after these symptoms come flooding back, I  fall off curbs ( my husband always will walk on the side closest to curbs if I'm symptomatic) my cerebellum can feel inflamed, I get neuropathy numbing and sometimes shooting burning pain in same limb. One side numb other shooting pain. It tends to be worst at night.

So yes you do sound as if you need to look into this further. I was diagnosed IBS for ( by symptoms only) 20 plus years, but now I realize it was always this. At 28 I was concerned I was getting symptoms of MS. I was tested for celiac, AI's, food allergies, and  a food intolerance diet 3 years ago. 

For bloating it helped to go gluten-free for sure. I still struggle with digestive issues as I am now finding I have symptoms of post pradinal  hypotension.

Which technically is cardiovascular , but likely the cns- ans ties in. I have to ensure I get enough protein, and electrolytes, and wear compression socks at work. I suspect the dysfunction  is from  nerve issues from having undiagnosed celiac so long  (possible) combined with the paternal side of my family that often has (good blood pressure/ low) that is also the likely celiac side (paternal cousin is celiac). 

Now that my diet contains few processed fortified foods etc. I have corn and cow milk intolerance too . I find to work full time I must look after not only the celiac/DH/ and my vitamin d, B's and magnesium, but my protein and electrolytes too to keep my unique homeostasis in balance.

I did try acupuncture for a time (2 years) while it did help for a time heal and get symptoms under control. This past summer I saw an Acupuncturist that specialized in nerve issues , but that treatment actually exacerbated things for my body so I stopped acupuncture altogether.

In general most nerve issues are under control, but the nerve/ blood vessel autonomic post pradinal/ POTS like flushing symptoms are things  I am learning to accept and manage. I have had flushing my whole life. Some flushing was due to food intolerance and immune (prostraglandins)and it also ties in to low blood pressure too. This flushing code has taken 45 years to figure out it is based on 3 components. ?

Best wishes on your journey on uncovering your symptoms of concern.

Omg what an awful time you've had sorry to hear all this but glad you've fought it. Gluten is just poison to some people. 

It's interesting you mention the autonomous system too as I've also noticed my breathing stop when falling asleep. I wake up and I'm just like "why aren't I breathing? best start again for the good of my health". Apparently this is central sleep apnea caused by problems in that autonomous department. 

Also, the ' cerebellum feeling inflamed ' part you mention. What do you mean? It wouldn't by chance be a pain in the back of your head around the base of your skull? I've had chronic pain there for years. Doctors brush it off as poor posture but I can't fix it. 

Been eating loads of gluten today ready for a blood test and as I'm writing this I've got such bad chest pain. Feels like a heart attack but I know from previous experience it's my esophagus very irritated and inflamed. 

The fight goes on. 

 

 

[aiellokrista]

On 10/24/2019 at 7:22 AM, Steve3005 said:

Hi, I've just signed up and would like some thoughts on my condition. Sorry if I ramble on a bit it's been a tough year. 

All my life I've struggled with heartburn and digestive issues and I noticed this would be worse after things like toast or cereals. So I've always considered a gluten allergy but symptoms never improved after going gluten free. I also took a test a few years back which said negative for celiac. However this was an in the post diy test so who knows the reliability? 

About 18 months ago I went the docs with what was to be the beginning of a host of neurological complaints. First I was noticing my hands not working properly. Fine Motor skills seemed harder (but never really progressed). Gradually I started getting muscle twitches all over, nerve pain in hands and feet, muscles can fatigue easily, then came swallowing difficulties where food gets stuck in throat. Mainly dry crumbly food. I've been referred to a neurologist to be tested for scary things which is causing a lot of stress. 

Up until a few weeks back I was managing but then in work I was getting dizzy spells. Then one day i got really bad. I could barely walk my heart was racing and I ended up in hospital where they found heart rhythm issues but they could be a red herring. After monitoring the cardiologist is happy my heart is healthy despite these findings. 

Since then I've had lots of dizzy spells followed by feeling terrible for hours after. Last week I noticed that it was worse after eating so I cut out gluten and within a couple of days I thought I was better. Loads of energy, dizziness gone but still light Headed. I did loads of research on what I can't eat, food labels etc. However, on Monday I went back to work and started feeling bad again. By Tuesday I was fully back to being ill and dizzy. I can't think of what I could have eaten but my stomach was so bloated and now I'm on the toilet (sorry) every time I try and eat. Not diarrhoea but loose enough. 

So my question is does any of this sound familiar in any way? If so can it really be so bad that it can attack your nervous system? I need to get tested but doctors appointments are hard to get at the moment and my neurology appointment is months away. So stressful. It's most likely not celiac but it does crop up on Google every time I investigate symptoms. 

Thanks everyone

Steve

Hi, Steve

I’ve been gluten-free for 7 years due to celiac disease. However, based upon what you have described it sounds as if you may have developed Vestibular Migraines. Yes, you can have them without the classic “headache” associated with them. I’ve had migraines for years until 1-1/2 years ago when they suddenly jumped into another stratosphere and went vestibular (causing vertigo). Absolutely horrible sensation. 

[Steve3005]

7 hours ago, aiellokrista said:

Hi, Steve

I’ve been gluten-free for 7 years due to celiac disease. However, based upon what you have described it sounds as if you may have developed Vestibular Migraines. Yes, you can have them without the classic “headache” associated with them. I’ve had migraines for years until 1-1/2 years ago when they suddenly jumped into another stratosphere and went vestibular (causing vertigo). Absolutely horrible sensation. 

It does sound like that! I'd always have thought migraine to be associated with headaches. The periodic nature of it followed by the hangover stage sounds very familiar. I can't see any connection to celiac though is that what you would connect yours to? I'd imagine it's hard to say. 

[Awol cast iron stomach]

23 hours ago, Steve3005 said:

Omg what an awful time you've had sorry to hear all this but glad you've fought it. Gluten is just poison to some people. 

It's interesting you mention the autonomous system too as I've also noticed my breathing stop when falling asleep. I wake up and I'm just like "why aren't I breathing? best start again for the good of my health". Apparently this is central sleep apnea caused by problems in that autonomous department. 

Also, the ' cerebellum feeling inflamed ' part you mention. What do you mean? It wouldn't by chance be a pain in the back of your head around the base of your skull? I've had chronic pain there for years. Doctors brush it off as poor posture but I can't fix it. 

Been eating loads of gluten today ready for a blood test and as I'm writing this I've got such bad chest pain. Feels like a heart attack but I know from previous experience it's my esophagus very irritated and inflamed. 

The fight goes on. 

 

 

Yes, it is exactly inflammation that then escalates to pain at the base of my skull at neck. 

Edited October 30, 2019 by Awol cast iron stomach
Missed word