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   I need to make a post because I am starting to really trust my gut. (*IT is a SUPER LONG POST). I am very curious if anyone else in this world has experienced or is experiencing something similar to this. I don't know where to go where anyone will believe me. I have had 3 separate passing out/ still conscious incidents where I end up having muscle convulsions.

   The first one happened New Year's Day 2017, I wasn't eating gluten free at this time. I keep being told I am negative for celiac disease. I was drinking and eating a s$#& ton of gluten. I went to the bathroom and my heart was beating too fast. I felt like I was dizzy, lightheaded, and I was going to faint. I eventually had convulsions on the toilet. Then they stopped I was able to wash my hands then go to the couch. My head dropped losing muscle tone in my body and falling to the floor. On the floor I had were 20-30 different muscle contractions/convulsions. I kept crying and I couldn't talk when they were happening. Eventually, they stopped.

   April 2017 I had another one in the waiting area of a new GI doctors waiting area. I had just started a high blood pressure medication. I went to pee before my appointment. I sat down. I started sweating on my palms, getting really hot, my heart palpitating, and I got really dizzy again. I told the nurse I am going to faint. My head dropped, and lose muscle tone before convulsing. Of course, my blood pressure dropped too low but was also not gluten free at this point. I was 100% alert and hearing everyone freaking out.

   I want everyone to understand from August 2017 until end-January 2018 I was on a gluten-free diet. The reason I got off of it at the end of January was for a food sensitivity/allergy test in February. My GI doctor said celiac disease was negative (again) but it seemed that a gluten-free diet would be best.

   The third time was February 18, 2018. I was at a wedding. I was drinking (and when I was on a gluten-free diet, of course, I made sure what I was eating, and drinking was gluten-free). I am drinking, and I have no care if it's made with gluten. I was eating food too. I sat down for the dinner and the hot sweaty feeling happened, my heart is racing, I feel sick. I feel worried. I know I am going to faint. In the women's bathroom, on this fancy couch with my fiancé. She and I are sitting there and my head drops… I lose all muscle tone. And I have multiple muscle convulsions on the ground… until the ambulance came.

   I have been to two neurologists who refuse to believe me that the ONE thing these 3 incidents have in common is the fact I was not eating gluten-free. They said to stop drinking.. but I was in Mexico for 1-week January 6th to 13th. Drinking every day and eating gluten-free with no incident like this. They refuse to take a head scan or believe this can be caused by gluten. The people who see it believe they are seizures, but I am 100% alert. It cannot be a seizure. Doctors think it can be trauma, anxiety, convulsion disorder or some other mental illness. I need to know I am not crazy and I know I am not. I believe it is gluten related. My body is telling me it is. Also, I have passed out other times in my life without convulsions that I alreadys related to some kind of food but I didn't know which kind.

Thank you for reading.

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Gluten can cause neurological issues. You said you went back on gluten in Jan and were tested in Feb. if you mean blood tested your doctor did the test too soon. If your symptoms are mostly neuro in presentation you might not have significant damage in your intestines. Your body is clearly telling you that it needs to be gluten free. IMHO to do a full challenge would be quite dangerous. Too bad the doctors wouldn't do an MRI as it can show UBO's which are lesions that show up when the antibodies are attacking the brain.  Of course then the Neurologist needs to know what they mean. Mine didn't and it cost a few more years of suffering before I was finally diagnosed.

Do be sure to read the Newbie 101 thread at the top of the Coping section to be sure you are doing all you can to keep yourself safe.  Folks with neuro issues can take a bit of time to heal but it sounds like you already had great relief the times you were already gluten free. Sometimes the body has to give us the diagnosis that the doctors can't...or won't.

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Minor exposures will cause me numbness, fog, and various gut issues. But last straight up consumption of gluten for me was back in June 2016. I lost full motor control and was on the floor vomiting for hours unable to move more then my eyes and my head a bit. My pulse dropped to the 30s by my fit bit, my friend thought I was dead since I turned completely white.
I had have a few previous issues with this before going gluten free over 5 years ago but those times are well....foggy in memory now.

Gluten Ataxia is what you need to look into, I have it with my celiac disease and another AI disease.

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I just want to add, because this was not clear to me from your narrative, that alcoholic beverages are not to be considered gluten free by default. All spirits can contain at least traces of gluten unless they are produced from gluten free grains/plants and stored in containers not contaminated by gluten. As an example of the latter, wines are sometimes stored in barrels that use glues and sealers made from wheat. Having said all that, distilled spirits are generally safe.

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You can be alert and still have a seizure. There are different types of seizures. I agree that there is often a neurological component to celiac. I wish you all the best in pursuing causes. Please keep us updated!

Plumbago

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8 hours ago, jetplanelovers said:

I have been to two neurologists who refuse to believe me that the ONE thing these 3 incidents have in common is the fact I was not eating gluten-free.

Jetplanelovers,

You are not crazy.

As Ennis_Tx mentioned it falls under the broad category of "Ataxia' which is mainly neurologic problems including anything related to the mind and it's function.

The one I remember that stuck out is this one a year ago that triggered psychosis from eating gluten.

http://www.foxnews.com/health/2016/06/28/gluten-triggers-strange-delusions-in-woman-with-celiac-disease.html

obviously it is usually not this extreme but it is real and under reported.

Your doctor's need to be looking for Tg6 antibodies to prove the "Gluten Ataxia" connection.

see link below about this connection.

see also this research entitled "Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

but your "smoking gun" is probably this new research about this very phenomena you originally asked about.

It is only 6 months old so it very new research.  . . this new research can take a while to trickle down to the clinical level.

here is the link entitled "Is tremor related to celiac disease?" where they note it (tremors) occurs as 2x in Celiacs than at the rate in the general population.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5473133/

they begin by saying

"Neurological features in celiac disease (celiac disease) are not rare (5%-36%), but tremor is scarcely described." but I think for most doctor's they are not aware it (neurologic) issues can affect more than a 1/3 celiac's considering it mainly a GI disease.

Which is so not true . . .

Most of my neurologic symptom's were depressive in nature.

It should also be noted many autoimmune disease like Cerebral Palsy and MS have gluten antibodies in their systems at diagnosis.

Who knows? if it is gluten ataxia undiganosed/misdiagnosed without further studies/research on this topic.

too often it is up to us as patients to educate our doctor's to these very real problems celiac's suffer from.  But it  we/they don't have case studies on the subject it is hard for doctor's to compare it to anything.

I remember when I was first diagnosed my doctor dismissed the idea my depression could be linked to my celiac diagnosis.

the good news for you the rate in the celiac population has been established and you can tell them with hard evidence it is not all in your head!

be your own advocate!

And yes it was survey based so it has limitations (as they admit) but it is the best and most up to date evidence I am aware of.

they note " Further confirmatory studies are required to confirm the exact frequency of tremor in celiac disease and the associated clinical correlates." but it does set a base line for comparison and it like sounds so far you don't have any good ammo to fight back with.

So I hope this is helpful.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

**** this is not medical but I hope it helps you to know you are not crazy!

posterboy by the grace of God,

 

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I get anxiety and confusion if I accidentally eat something with gluten. A lot of people get neurological problems or ataxia after eating wheat. There is a lot of information and studies online about this but nobody knows for sure why. It may be different for different people.  In some cases celiac disease can trigger autoimmune encephalitis. A food allergy (IGE) can also  cause mental problems. I wouldn't eat wheat if you suspect it is causing problems.  A blood test may not be able to detect all types of wheat sensitivity or celiac disease. 

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I was just diagnosed with Celiac after 19 years of chronic sternum pain. No one knew the cause. I also have a history of passing out. See a cardiologist to rule out heart problems. There are many things that could cause it. I have low blood pressure and dehydration have even put me on the ground. 

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I have the same manifestations. No neurologist believes me, but I do think depending where you live you should try to find one who is already familiar with celiac. I know it is yet another appointment, but please go see a cardiologist just to rule heart issues out. I also agree that you have to be your own advocate, but please take at least 1 day or 2 off of your research a week, the stress from not being heard, understood or taken seriously can cause severe frustration and provoke more attacks. All my best to you. Don’t forget to try to find joy anytime you can. The answer will come at some point. 

How are your iron levels ? Rule out other allergies, vitamin deficiency etc  

All my best to you. 

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Celiac Disease causes malabsorption which results in malnutrition and vitamin deficiencies.  

Alcohol consumption causes low levels of vitamin B6 (pyridoxine).  

Loss of vitamin B6 (pyridoxine) will cause seizures. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4494992/

Take vitamin B6 in the form of P5P to restore your level. 

And quit drinking.  

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hey All I just came back from the doctors. I have high levels of ammonia in my blood. Oh and a bit of Lyme disease  starting treatment as soon as they finish my cardio exams. Hope this can help someone ! It took a lot of research and insinsting ! Never give up  i have a heart monitor attached to me for 2 weeks. Sexy ;) 

have a nice day. Here is some info.

Elevated concentrations of ammonia in the brainas a result of hyperammonemia leads to cerebral dysfunction involving a spectrum of neuropsychiatric and neurological symptoms (impaired memory, shortened attention span, sleep-wake inversions, brain edema, intracranial hypertension, seizures, ataxia and coma).

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In 2016 I started having esophageal paralysis. I would bloat at night and in the morning.. Both ends.. This happened daily for 2 year's. During this time I was diagnosed with cervical cancer so my symptoms were written off. Cancer was cured but the symptoms remained. 

In October of 2018 I began having heart arrhythmia, loss of consciousness, dizziness, migraines, weight loss, hair loss, rashes on my hands (touching gluten, still happens when I make sandwich for my kid's), memory loss, anxiety, depression, and lethargy. My mom is celiac, so I kept asking the doc's to test me (I kept switching because they said it was all in my head, and I knew better)! No one would listen till doc number 5 and the bloody stool. She tested me and my results were 34>10. I had NO vitamin B6, B12, flic acid, or folate in my body. None! She called me in then rushed for biopsies of stomach and intestines, I still haven't went back for the colonoscopy. She said my intestines were dying, but it should reverse and to go on a gluten free diet. So I found a multi B supplement she ordered some extra to take on top of it, but I don't believe it's absorbing (dead intestines and all) and I can't convince them to give me shots. They referred me to a neurologist but my insurance won't approve it. They want me tested for MS I have been having random bouts of muscle weakness and paralysis of limbs along with a myriad of neurological symptoms. This is my 3rd AI disorder and my mom has had 5 AI so.. 

Here I am down from 135 to 105 and still losing. I have no support from my husband I love him dearly but he just doesn't understand. I can't find anyone in Southern Louisiana who knows about celiac or side effects or how to help me reverse the memory loss and anxiety. Or to help treat other symptoms. I feel so overwhelmed by it all. My mom lives out of state and she she's an internal med specialist for other reasons but he helps treat her Celiac, she is so lucky. 

So long story short yes your symptoms or some of them can be celiac related.

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9 hours ago, healthysquirrel said:

hey All I just came back from the doctors. I have high levels of ammonia in my blood. Oh and a bit of Lyme disease  starting treatment as soon as they finish my cardio exams. Hope this can help someone ! It took a lot of research and insinsting ! Never give up  i have a heart monitor attached to me for 2 weeks. Sexy ;) 

have a nice day. Here is some info.

Elevated concentrations of ammonia in the brainas a result of hyperammonemia leads to cerebral dysfunction involving a spectrum of neuropsychiatric and neurological symptoms (impaired memory, shortened attention span, sleep-wake inversions, brain edema, intracranial hypertension, seizures, ataxia and coma).

Healthy Squirrel,

I am glad you found out what was going on with you.

I just wanted to post a few links for you to check out.

I ran across this one a few months ago about Lyme disease that might help you.

https://www.lymedisease.org/lyme-sci-mcas-agony/

The good news taking some antibiotics now that you caught the Lyme early can usually help you recover without further side effects from it.

I have been doing some research on SIBO lately and I think you might  have developed it as part of your/or after your Celiac diagnosis.

SIBO is common in Celiac's see this article about it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

I will quote their section on SIBO's relation in/to Celiac disease.

quoting

"Long-standing celiac disease can disturb gut motility, leading to small intestine dysmotility. A study of 15 celiac patients with persistent symptoms despite adherence to a strict gluten-free diet found that 66% had bacterial overgrowth on lactulose breath testing. All of these patients noted a resolution of their symptoms after being treated for bacterial overgrowth."

this might explain why you could still be having symptom's after going gluten free.

and having SIBO can also explain (in part) your high ammonia blood levels.

the medical  name is  hyperammonemia and if it effects your brain it is usually known as

Hepatic Encephalopathy if the cause is your liver and SIBO could be causing your high ammonia blood levels.

Here is an article about it entitled "Gut Microbiota: Its Role in Hepatic Encephalopathy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4442863/

It talks about SIBO role in elevating ammonia blood levels.

they conclude quoting in their paragraph on gut dysbosis

Modulation of gut microbiota (SIBO my words in) improves hepatic encephalopathy

"Now that gut microbiota (IE dysbosis's like SIBO) are clearly implicated in the development of HE (Hepatic Encephalopathy), their modulation by various agents provides an opportunity to treat covert and overt HE. Successful modulation of gut microbiota leading to improvement in HE strengthens the belief that derangement in microbiota is certainly an important factor in development of HE."

treating your SIBO un/misdiagnosed should help your mental state get better.

At very least it would be worth sharing this research with your team of doctors.

Now it is off/back to the hay field for a few days.

Again I am glad they found out what was causing your seizures.

Here is a similar article that explains your seizures (like yours) without the diagnosis of SIBO as the underlying cause.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4569228/

I hope this is helpful but it is not medical advice.

Posterboy,

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On 6/21/2019 at 8:49 AM, Princessnogluten said:

In 2016 I started having esophageal paralysis. I would bloat at night and in the morning.. Both ends.. This happened daily for 2 year's. During this time I was diagnosed with cervical cancer so my symptoms were written off. Cancer was cured but the symptoms remained. 

In October of 2018 I began having heart arrhythmia, loss of consciousness, dizziness, migraines, weight loss, hair loss, rashes on my hands (touching gluten, still happens when I make sandwich for my kid's), memory loss, anxiety, depression, and lethargy. My mom is celiac, so I kept asking the doc's to test me (I kept switching because they said it was all in my head, and I knew better)! No one would listen till doc number 5 and the bloody stool. She tested me and my results were 34>10. I had NO vitamin B6, B12, flic acid, or folate in my body. None! She called me in then rushed for biopsies of stomach and intestines, I still haven't went back for the colonoscopy. She said my intestines were dying, but it should reverse and to go on a gluten free diet. So I found a multi B supplement she ordered some extra to take on top of it, but I don't believe it's absorbing (dead intestines and all) and I can't convince them to give me shots. They referred me to a neurologist but my insurance won't approve it. They want me tested for MS I have been having random bouts of muscle weakness and paralysis of limbs along with a myriad of neurological symptoms. This is my 3rd AI disorder and my mom has had 5 AI so.. 

Here I am down from 135 to 105 and still losing. I have no support from my husband I love him dearly but he just doesn't understand. I can't find anyone in Southern Louisiana who knows about celiac or side effects or how to help me reverse the memory loss and anxiety. Or to help treat other symptoms. I feel so overwhelmed by it all. My mom lives out of state and she she's an internal med specialist for other reasons but he helps treat her Celiac, she is so lucky. 

So long story short yes your symptoms or some of them can be celiac related.

I am so sorry that went through a huge struggle in obtaining a diagnosis.  Unfortunately that has happened to so many of us.  

With so many deficiencies, please consider not eating out, make your kitchen safe and avoid processed foods.  It can take time to heal, but it is possible.

Get your kids tested for celiac disease if if they have NO symptoms!   That includes siblings too (well...they are probably adults and you can encourage them).  

If you need support (mental), just drop by the forum.    We have all walked in your shoes.  Sometimes it helps to vent (anonymously).  We can also help with Gluten Free questions too!  

Edited by cyclinglady

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On 6/21/2019 at 5:55 AM, healthysquirrel said:

hey All I just came back from the doctors. I have high levels of ammonia in my blood. Oh and a bit of Lyme disease  starting treatment as soon as they finish my cardio exams. Hope this can help someone ! It took a lot of research and insinsting ! Never give up  i have a heart monitor attached to me for 2 weeks. Sexy ;) 

have a nice day. Here is some info.

Elevated concentrations of ammonia in the brainas a result of hyperammonemia leads to cerebral dysfunction involving a spectrum of neuropsychiatric and neurological symptoms (impaired memory, shortened attention span, sleep-wake inversions, brain edema, intracranial hypertension, seizures, ataxia and coma).

This will sound weird, but I am so happy for you!  At least you know where you stand.  You are not crazy!  

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On 6/22/2019 at 8:46 PM, cyclinglady said:

This will sound weird, but I am so happy for you!  At least you know where you stand.  You are not crazy!  

Hello Cyclinglady, it does not sound weird at all. I am so happy it is a very strange feeling to know what is going on, it took soooooooo long. My anatomy and physiology class and your replies helped me to become very determined to get well, so thanks to you and to everyone! I am looking forward to not having seizures and to be perfectly honest. I can't wait to be able to think clearly again! yeah! 

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Healthy Squirrel,

Now that now what it is ..they need to find out what is causing it.

You mentioned you had Lyme disease recently ... hopefully treating it will help.

You should also have them check your EBV status ...it can lie dormant in adults and cause liver problems later in life.

Here is a study about it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4818405/

Here ares me non  heptatic (non liver) causes studies.

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2011.03279.x

https://pmj.bmj.com/content/77/913/717

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1829435/

when they find out what is the underlying cause of the elevated high ammonia levels  ....you will notice a high degree of remission or else it will keep coming back (idiopathetic for no known reason).

I think the Lyme and possible SIBO (which can cause similar symptom's) in a subset of the population might be where I start to see if one of these condition's are triggering your high ammonia blood levels.

Link posted here again for your reference entitled "Noncirrhotic hyperammonemia causing relapsing altered mental status"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4569228/

Let  us know if they ever find out what the underlying cause(s) were...it can/might help the next person suffering with the same thing.

I always like to say ....they way back...is not long...if you know the way...

And why the "why" is as important as the what. ...the doctor' know now what is happening....now why????

I hope this is helpful but it is not medical advice.

Posterboy,

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On 6/21/2019 at 5:49 PM, Princessnogluten said:

In 2016 I started having esophageal paralysis. I would bloat at night and in the morning.. Both ends.. This happened daily for 2 year's. During this time I was diagnosed with cervical cancer so my symptoms were written off. Cancer was cured but the symptoms remained. 

In October of 2018 I began having heart arrhythmia, loss of consciousness, dizziness, migraines, weight loss, hair loss, rashes on my hands (touching gluten, still happens when I make sandwich for my kid's), memory loss, anxiety, depression, and lethargy. My mom is celiac, so I kept asking the doc's to test me (I kept switching because they said it was all in my head, and I knew better)! No one would listen till doc number 5 and the bloody stool. She tested me and my results were 34>10. I had NO vitamin B6, B12, flic acid, or folate in my body. None! She called me in then rushed for biopsies of stomach and intestines, I still haven't went back for the colonoscopy. She said my intestines were dying, but it should reverse and to go on a gluten free diet. So I found a multi B supplement she ordered some extra to take on top of it, but I don't believe it's absorbing (dead intestines and all) and I can't convince them to give me shots. They referred me to a neurologist but my insurance won't approve it. They want me tested for MS I have been having random bouts of muscle weakness and paralysis of limbs along with a myriad of neurological symptoms. This is my 3rd AI disorder and my mom has had 5 AI so.. 

Here I am down from 135 to 105 and still losing. I have no support from my husband I love him dearly but he just doesn't understand. I can't find anyone in Southern Louisiana who knows about celiac or side effects or how to help me reverse the memory loss and anxiety. Or to help treat other symptoms. I feel so overwhelmed by it all. My mom lives out of state and she she's an internal med specialist for other reasons but he helps treat her Celiac, she is so lucky. 

So long story short yes your symptoms or some of them can be celiac related.

I am so sorry to read this. hope you are ok. Maybe let your husband read what you wrote, it could help him understand. What you are experiencing is a lot to take in at once and I am sending you kind thoughts. Try to find out the exact cost of that specialists would cost without insurance. Your heath is worth the cost if you can afford it. I personally tried everything and finally found a DR/micro-nutritionist and he is the only one who really took my symptoms seriously and with my own research and his crazy amount of testing, we found some answers. I hope someone on this forum can point you in the direction to a good doctor in Southern Louisiana. Anyone live in that area?? All my best !

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