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I Think My Doctor Is Wrong?

janedoe

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janedoe Newbie
janedoe
Posted

I have been diagnosed with Celiac Disease over ten years ago, even when not much was  known about it.  Over the years, I have led a normal lifestyle up until about eight months ago (November). I started having changing symptoms including sharp pains that lasted for 5 seconds and would leave me stunned. In April, the symptoms changed, and became worse. I threw up several times and I started to become weaker.

Let me note that I have had blood pressure issues, blood sugar issues, thyroid issues, and circulatory problems my whole life. I also would have these episodes where I could not move a muscle in my body except for moving my eyes, which was difficult. They could last anywhere from 5 minutes to 15. Sometimes all of my muscles could clench and all I could do is relax or the opposite, I become a rag doll. I would also have dizzy spells or would occasionally pass out but I would know it was coming, I would feel very light and off balance beforehand.

They became worse too. I now have other issues. I cannot see well out of my right eye and have problems with anything connected to the left side of the brain. I was even born right handed and it seems as if my body is trying to switch to left handedness (which is controlled by the right side of the brain). At the moment I am ambidextrous. I also have a problem with malabsorption and I eat much more than someone of my size should and still not gaining weight. 

I went to a chiropractor back in May to discuss the issues. He told me I had a leaky gut and that I should not eat a list of foods: oats, any dairy, yeast, coffee, millet, hemp, sorghum, whey protein, teff, and casein.  I obliged and have not been eating any of the items in over a month. A couple weeks after I started, I was skeptical, I felt no difference in any of my symptoms. They actually seemed to get worse. I have lost five pounds and I am still eating the same amount. I am also very light to begin with so this is scary. I have also started having dizzy spells and I am now passing out without any warning, sometimes even having a muscle episode right before, so I could not even sit down. Should I stop the diet? Is there something else that could be going on with me besides a leaky gut?

 

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GF Lover Rising Star
GF Lover
Posted

I would suggest you contact your Doctor right away.  A Celiac does not typically develop leaky gut after 12 years, that can happen very early in diagnosis.  If you a still eating gluten free this probably has nothing to do with Celiac.  You should see a REAL Medical Doctor or Neurologist about your symptoms.

 

None of us here are doctors and should not help you with your current symptoms unless you want to talk about diet changes.

 

I would again stress calling your Medical Doctor.

 

Colleen

Gemini Experienced
Gemini
Posted

I have the utmost faith in chiropractors and mine has helped me out tremendously over the years with bone and muscle problems BUT for symptoms like these, Kareng is right. You need to see a Primary care who can then refer you to a specialist. Chiropractors are doctors, they go to school almost as long as a GP but they are for skeletal and some associated muscle problems and should not be advising people how to eat. Your symptoms sound serious and I hope you see a doctor who can address them.

Gemini Experienced
Gemini
Posted

Sorry Colleen........I meant to say you and not Kareng! Although you both are on a par with giving good advice! I need to wear my glasses when attempting to post....blind as a bat I am.

kareng Grand Master
kareng
Posted

Sorry Colleen........I meant to say you and not Kareng! Although you both are on a par with giving good advice! I need to wear my glasses when attempting to post....blind as a bat I am.

I saw that and thought... Well, I would have said the same. It would scare the hell out of me to be suffering stroke or epilepsy symptoms. The last place I would be going is a chiropracter! And honestly, I wouldn't be waiting months and calmly typing on a forum asking for advice! Get yourself to a real docotor! Maybe even an Emergency room when the next stroke/ seizure happens.

1desperateladysaved Proficient
1desperateladysaved
Posted

I took this to mean that that Jane Doe continued to eat a normal diet rather than adopting a gluten free one.  If a celiac is not conforming to the diet they can expect sooner or later to have one or more of 300 symptoms.  Yes, see a doctor, but while you are waiting, learn about and follow the gluten free diet.  This diet may seem hard, but eating gluten is much harder in my opinion.  If you weren't convinced the first time that you had celiac and are on a normal diet; it may be a good thing to test until you are thoroughly convinced.  I care about you Jane Doe and wish you the very best in healing whatever is the problem.

 

Dee

kareng Grand Master
kareng
Posted

I took this to mean that that Jane Doe continued to eat a normal diet rather than adopting a gluten free one.  If a celiac is not conforming to the diet they can expect sooner or later to have one or more of 300 symptoms.  Yes, see a doctor, but while you are waiting, learn about and follow the gluten free diet.  This diet may seem hard, but eating gluten is much harder in my opinion.  If you weren't convinced the first time that you had celiac and are on a normal diet; it may be a good thing to test until you are thoroughly convinced.  I care about you Jane Doe and wish you the very best in healing whatever is the problem.

 

Dee

I did wonder about that too. If she isn't eating gluten free, then that could be the cause. I gave her the benefit of the doubt and figured she was gluten-free and having these awful problems.

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LauraTX Rising Star
LauraTX
Posted

I have been diagnosed with Celiac Disease over ten years ago, even when not much was  known about it.  Over the years, I have led a normal lifestyle...

 

Janedoe, does this mean you have not been eating gluten free?  Or have you been gluten-free for ten years?  That makes a huge difference.  

1desperateladysaved Proficient
1desperateladysaved
Posted

JaneDoe, What is the doctor wrong about? :unsure:  Perhaps the newer diet?

janedoe Newbie
janedoe
Posted
  • Author

I am sorry for taking so long to reply. I have been eating the strictest gluten free diet the past ten years. I started when I was very little so I've never wanted to strive to eat gluten. If I even have a little gluten, I will feel it within 30 minutes and it is not pretty. I was pressured into the "leaky gut" diet but now I am on my first day off of it. I am feeling no difference. All of the symptoms are still there.

LauraTX Rising Star
LauraTX
Posted

I'm relieved to hear you were gluten-free for all those years.  I highly recommend going to see a real doctor.  I would start with a visit with your primary care doctor, and they can refer you from there.  

janedoe Newbie
janedoe
Posted
  • Author

I am seeing him in two days. Hopefully we will solve all of this! I also scheduled an appointment with the Center of Celiac Research in Boston just in case it was related to Celiac Disease and they would hopefully they would know.

GF Lover Rising Star
GF Lover
Posted

Glad to hear your seeing the Doctors.  I hope they find some answers too.

 

Colleen

  • 3 months later...
janedoe Newbie
janedoe
Posted
  • Author

I do not know if any of you are still interested but they still haven't diagnosed me. It has gotten worse, I pass out every week and with other complications. They (cardiologist) do think it is Recurrent Vasovagal Synopsis, but there is no test for it. I am also going to a neurologist soon.

icelandgirl Proficient
icelandgirl
Posted

That must be frustrating. Have you been to Boston yet to see if there's anything they can do? Does anything seem to help? I hope that you find a resolution soon.

GFinDC Veteran
GFinDC
Posted

Hi Janedoe,

 

Maybe it makes sense to try some food eliminations?  Some of the foods that seem to cause problems for some of us are nightshades, soy, dairy, eggs, and corn.  There are probably others I am not thinking of right now.  Anyhow, some of the other food intolerances can cause fainting symptoms for some people.  An elimination diet can help you determine if it is a food related issue.  A mistake people sometimes make is thinking elimination diets are about eating less food.  They are really about eating fewer foods, but as much of those foods as you want.

janedoe Newbie
janedoe
Posted
  • Author

The people in Boston do not think it is related. I am seeing a cardiologist and a neurologist about the vasovagal. 

To GFinDC, yes I said in my first post that they did try that but it made my symptoms worse and more dangerous. Also, I know I eat plenty. I have about 6 meals a day and eat much more than a regular person. I also monitor my water intake and make sure I have enough.

SMRI Collaborator
SMRI
Posted

Have they done an MRI or CT?  Your symptoms sound like either seizures or mini-strokes.  

janedoe Newbie
janedoe
Posted
  • Author

They have done an EKG (determines if epilepsy is present), ultrasounds on my arteries and heart. I'm also on a heart monitor, I do not know if I said that already.

The Vasovagal is when the blood pressure and heart rate become too low. This results in not enough oxygen to the brain, causing complications.

beth01 Enthusiast
beth01
Posted

An EEG would determine if epilepsy is present, an EKG is a tracing of your heart. Just an FYI

  • 2 weeks later...
John Burlingame Explorer
John Burlingame
Posted

Have you tried not eating soy? Soy had started to give me some messed up symptoms, I thought I had a stroke and was slowly dieing, brain fog,memory loss,panic attacks on the hour. no energy. the soy in my body was making every cell fight it self.

John Burlingame Explorer
John Burlingame
Posted

Have you tried not eating soy? Soy had started to give me some messed up symptoms, I thought I had a stroke and was slowly dieing, brain fog,memory loss,panic attacks on the hour. no energy. the soy in my body was making every cell fight it self.

it is in everything. Im about to start my own garden just so I dont have to buy the stuff at the store because they cover everything in soy to preserve the food. I did ekg and mri and exrays and just about everything else. Sounds like your eating something that you body is at war with.

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