Shaking/Tremors and Off Balance

[Ginger38]

I have about one more week to go on the gluten challenge; I’ve been noticing some odd things and am wondering if they are gluten related— chest pain, extreme sleepiness and yawning, feeling off balance and feeling like I’m walking sideways or something,  tremors and feeling like my insides are shaking. Ive noticed being forgetful and struggling to find words but I’ve also been stuttering some which is not something I ever do

 

[cristiana]

Hi @Ginger38

Well done on your challenge... nearly there.

I noticed odd shaking in my voice - I recall my voice sounded shaky - it was really weird.  Feeling off balance is something that people have posted about a lot to do with gluten exposure.  Ditto forgetfulness and struggling to find words.  Gluten assaults the system in many, many ways.

Once you are able to go gluten free, I expect you should see a gradual improvement, esp. if these are new symptoms to you.

What is the chest pain like - have you had it checked out?  

 

Edited September 18 by cristiana

[Scott Adams]

It's always best to get any chest pains checked out by your doctor, but as @cristiana mentioned, the other symptoms do sound like they could be related to the gluten, and the chest pains may be as well, but it's always a good idea to mention this to your doctor.

[cristiana]

Agreed, @Scott Adams.  

 

[Ginger38]

1 hour ago, cristiana said:

Hi @Ginger38

Well done on your challenge... nearly there.

I noticed odd shaking in my voice - I recall my voice sounded shaky - it was really weird.  Feeling off balance is something that people have posted about a lot to do with gluten exposure.  Ditto forgetfulness and struggling to find words.  Gluten assaults the system in many, many ways.

Once you are able to go gluten free, I expect you should see a gradual improvement, esp. if these are new symptoms to you.

What is the chest pain like - have you had it checked out?  

 

Thanks for the encouragement, I am honestly ready to give up! It is majorly interfering with my ability to function and work. Feeling off balance and having this sleepiness and the shakes is the worst!! The chest pain just comes and goes , nothing too concerning, I have noticed it before with gluten exposure. I have a cardiologist as well so it’s  nothing to be concerned about cardiac wise. Might just be gas pains 😐

58 minutes ago, Scott Adams said:

It's always best to get any chest pains checked out by your doctor, but as @cristiana mentioned, the other symptoms do sound like they could be related to the gluten, and the chest pains may be as well, but it's always a good idea to mention this to your doctor.

Thanks. The chest pain just comes and goes , nothing too concerning, I have noticed it before with gluten exposure. I have a cardiologist as well so it’s  nothing to be concerned about cardiac wise. Might just be gas pains 😐

[cristiana]

I've had to be checked out twice by cardiology at what we call in the UK 'Accident and Emergency' with chest pains the conclusion was reflux and  costochondritis.  Both are very bad when I've been glutened. I've also had very bad bloating in my  upper back when taking iron.  I'm glad you are being looked after by a cardiologist, though, as best to be safe than sorry.

 

[Ginger38]

8 hours ago, cristiana said:

I've had to be checked out twice by cardiology at what we call in the UK 'Accident and Emergency' with chest pains the conclusion was reflux and  costochondritis.  Both are very bad when I've been glutened. I've also had very bad bloating in my  upper back when taking iron.  I'm glad you are being looked after by a cardiologist, though, as best to be safe than sorry.

 

I have had a lot of reflux since starting the gluten challenge. My GI gave me some meds to take to hopefully help a little while on the gluten challenge

[cristiana]

The reflux according to the hospital can be the culprit.  I think sometimes, too, the medication that they gave me to stop it caused bloating which again  added to the pain in the back and chest.  I hope you get some answers soon, let us know how the results go.  

Edited September 19 by cristiana

[Ginger38]

9 hours ago, cristiana said:

The reflux according to the hospital can be the culprit.  I think sometimes, too, the medication that they gave me to stop it caused bloating which again  added to the pain in the back and chest.  I hope you get some answers soon, let us know how the results go.  

Yea the bloating is MISERABLE!! I have gained 7 pounds since starting the gluten challenge 😵‍💫😔 at times I look and feel extremely pregnant! I have measured myself and will sometimes deflate 2 inches overnight 🤦🏼‍♀️I hope this weight gain goes away after I get back to the gluten free lifestyle .. I can’t afford to keep this extra weight

Thank you!! Will do 

[Scott Adams]

I forgot, why are you doing the gluten challenge again? I ask only because it sounds like you will be gluten-free either way, even if your test results are negative.

[Ginger38]

17 minutes ago, Scott Adams said:

I forgot, why are you doing the gluten challenge again? I ask only because it sounds like you will be gluten-free either way, even if your test results are negative.

Basically because he was going to do the biopsy either way , so I agreed after him bugging me lol (after all this time of refusing) (and I’m already regretting) to do the gluten challenge.

But yes he’s already told me even in if the biopsy is negative I still have to live as a celiac for the rest of my life bc he’s certain I’m celiac positive regardless of what the biopsy shows. But he can’t put it on paper if it’s negative so I really don’t know what the point is. I have all the symptoms and have had positive IgA antibodies every time I’ve been tested. They did decrease after starting a gluten free diet but never made it to zero. 
Also my daughter is going to pediatric gastroenterology in a few months so I thought it may be helpful for her for me to have the procedure 🤷🏼‍♀️

[Scott Adams]

While I understand wanting a formal diagnosis, it sounds like you will likely remain gluten-free either way, even if you should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS). Keep in mind that there are also drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. 

Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis.

[Ginger38]

37 minutes ago, Scott Adams said:

While I understand wanting a formal diagnosis, it sounds like you will likely remain gluten-free either way, even if you should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS). Keep in mind that there are also drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. 

Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis.

Yes I figured out I couldn’t have gluten years ago when I was symptomatic and tested positive, but was misinformed and told I couldn’t have celiac but to go gluten free. I was already gluten free. I was never willing to go back on gluten and make myself so sick to have the biopsy especially when the biopsy isn’t 💯. But Now I have to have a procedure anyway and he told me he was doing the biopsy either way .. but I should consider the gluten challenge since I have never had the biopsy. He acted like it was super important to have this on paper. 

I had no idea there were any possible negative drawbacks to having a formal diagnosis 🤦🏼‍♀️

[cristiana]

Just to add something here... if any people in the UK are reading this, there can be definite advantages if you are formally diagnosed coeliac,  in terms of getting extra support from the NHS.  For free you get to see a nutritionist, additional vaccinations if deemed necessary, in some areas prescriptions for gluten free food; bone density scans, annual blood tests and reviews with a gastroenterologist, plus it has been my experience I've been able to see a gastroenterologist without a GP's re-referral when I've had complications. 

That said, I don't know what impact there would be on health insurance; but I have found that when it comes to travel insurance I have had to declare it but it hasn't made any difference to the premium.

However, I realise things can be very different in other parts of the world, and I am not sure where you are from, @Ginger38

 

Edited September 19 by cristiana

[Scott Adams]

In general I'm all for a formal diagnosis, except in cases where someone gets very sick when they eat gluten, and have already been on a gluten-free diet for a long time and don't plan to eat it again anyway.

There seems to be more drawbacks that keep popping up with being formally diagnosed--at least here in the USA. I can testify that it's definitely harder to obtain life insurance, and if you can get it the premiums are quite a bit higher than if I did not have it, at least from my fairly recent experience when getting a new policy. 

@Ginger38 you're very close to the end of your challenge, so let us know how it turns out.

[cristiana]

9 hours ago, Scott Adams said:

In general I'm all for a formal diagnosis, except in cases where someone gets very sick when they eat gluten, and have already been on a gluten-free diet for a long time and don't plan to eat it again anyway.

There seems to be more drawbacks that keep popping up with being formally diagnosed--at least here in the USA. I can testify that it's definitely harder to obtain life insurance, and if you can get it the premiums are quite a bit higher than if I did not have it, at least from my fairly recent experience when getting a new policy. 

@Ginger38 you're very close to the end of your challenge, so let us know how it turns out.

Thanks for drawing our attention to this, Scott.  I have no idea about this in the UK, I think I need to do some more homework!  

[Ginger38]

On 9/19/2024 at 7:37 PM, Scott Adams said:

In general I'm all for a formal diagnosis, except in cases where someone gets very sick when they eat gluten, and have already been on a gluten-free diet for a long time and don't plan to eat it again anyway.

There seems to be more drawbacks that keep popping up with being formally diagnosed--at least here in the USA. I can testify that it's definitely harder to obtain life insurance, and if you can get it the premiums are quite a bit higher than if I did not have it, at least from my fairly recent experience when getting a new policy. 

@Ginger38 you're very close to the end of your challenge, so let us know how it turns out.

Procedures are done , thank goodness 

[RMJ]

I hope your procedure was successful and that you get a definitive answer from the biopsies.

[Ginger38]

44 minutes ago, RMJ said:

I hope your procedure was successful and that you get a definitive answer from the biopsies.

Yes it was successful , have a really bad sore throat and some abdominal pain / gas but guess I’m okay. He took several biopsies of my duodenum, stomach and colon 

[Scott Adams]

Let us know how it turns out.

[Zipper1975]

I had 9 out 10 of your symptoms & most doctors don't pay attention about it. I figured out after extreme stomach pains I couldn't eat anything with regular flour or worse wheat. If u do few crumbs my stomach looked like I was 8 months pregnant no kidding. But I noticed what works for me is going green organic kectin free diet life style. Even gourmet chocolates made me bed doubled over in pain. Through research found out the problem was my gut health affect by lectin ( inflammation causing that's is naturally occuring in mostly night shade plants ex: zucchini) so to kill them I found out must pressure cook those veggies and other skin seeds from nature. And FYI: oats have naturally in them 5-8% gluten that definitely will cause me pain & inflammation. So I try my best eat organic grain free diet than there no pain & I feel more energy. Your symptoms are definitely from foods you are eating. And mushrooms are regular must because they help good bacteria balance growth in our gut to fight off inflammations and bad bacteria for our health. You also need to check if thyroid is intact and for B12 Deficiency & low Iron or low folic acid. I was severely anemic for years. And still am vitamin D deficiency from tears damage to my gut & lack of sunlight. Our gut is a responsible for absorbing vitamins. This is from personal experience not expertise but good luck with that with doctors are only trained 1 hour on nutrition in all their medical schooling as far as what a trusted sources I researched. Wish you all the best. Zohara R.

....I meant Lectin free diet not kectin lol.

[Ginger38]

On 9/27/2024 at 3:49 PM, RMJ said:

I hope your procedure was successful and that you get a definitive answer from the biopsies.

Thank you so much!! Me as well, my family doesn’t believe me And it is so frustrating 

On 9/27/2024 at 5:08 PM, Scott Adams said:

Let us know how it turns out.

Will do! Hoping for some definitive answers! My family doesn’t believe me and I wouLd love to have definitive proof 

[Ginger38]

On 9/27/2024 at 8:42 PM, Zipper1975 said:

I had 9 out 10 of your symptoms & most doctors don't pay attention about it. I figured out after extreme stomach pains I couldn't eat anything with regular flour or worse wheat. If u do few crumbs my stomach looked like I was 8 months pregnant no kidding. But I noticed what works for me is going green organic kectin free diet life style. Even gourmet chocolates made me bed doubled over in pain. Through research found out the problem was my gut health affect by lectin ( inflammation causing that's is naturally occuring in mostly night shade plants ex: zucchini) so to kill them I found out must pressure cook those veggies and other skin seeds from nature. And FYI: oats have naturally in them 5-8% gluten that definitely will cause me pain & inflammation. So I try my best eat organic grain free diet than there no pain & I feel more energy. Your symptoms are definitely from foods you are eating. And mushrooms are regular must because they help good bacteria balance growth in our gut to fight off inflammations and bad bacteria for our health. You also need to check if thyroid is intact and for B12 Deficiency & low Iron or low folic acid. I was severely anemic for years. And still am vitamin D deficiency from tears damage to my gut & lack of sunlight. Our gut is a responsible for absorbing vitamins. This is from personal experience not expertise but good luck with that with doctors are only trained 1 hour on nutrition in all their medical schooling as far as what a trusted sources I researched. Wish you all the best. Zohara R.

....I meant Lectin free diet not kectin lol.

I agree there is definitely something going on. I am having a terrible time with anything tomato, cucumbers, salad .. it’s like I’m not digesting my food. And it seems like my body does not like most all grains if any. I’m out of ideas on what to even eat to get to feeling better. I am so bloated right now, have to wear leggings - and I’ve also gained almost 10 pounds while doing the gluten challenge 

[Ginger38]

On 9/27/2024 at 5:08 PM, Scott Adams said:

Let us know how it turns out.

So what happens if a person doesn’t have any  damage yet? The biopsy would come back negative, correct? But does that mean you don’t have celiac or it was just caught before any major damage has been done? Im A bit confused 

[Scott Adams]

It could mean that:

1. You have celiac disease but caught it early, before villi damage (especially true if you had a positive blood test for celiac disease--but there is the Marsh scale, and even minor damage could be caused by celiac disease);
2. You have gluten sensitivity--approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
3. You don't have either of the conditions and can eat gluten normally.

From all of your posts I don't think you fit #3 here, so no matter the outcome a gluten-free diet might be your outcome for optimal health.