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Any possibility of neurological symptoms being gluten related?

cari83

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cari83 Rookie
cari83
Posted

Hello,

I developed scary neurological symptoms (tremor, muscle jerks) nearly a year ago only a day or two after a head injury. It's very upsetting. Around the same time (6 or 7 days before symptoms started) I also went back on gluten after a month off gluten. I asked my doctor to do the blood test for gluten sensitivity and I'll include the image of the results he sent me. But basically it's saying I don't have any problem with gluten. I have had some pain under my left rib off and on for a while and that pain wasn't present at all during my month off gluten. I'm just wondering if you can have such low results, totally not sensitive to gluten, on these tests, and possibly have gluten-related neurological symptoms? Any advice related to gluten would be very much appreciated.

 

Carla

testresults.webp

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kareng Grand Master
kareng
Posted
40 minutes ago, cari83 said:

Hello,

I developed scary neurological symptoms (tremor, muscle jerks) nearly a year ago only a day or two after a head injury. It's very upsetting. Around the same time (6 or 7 days before symptoms started) I also went back on gluten after a month off gluten. I asked my doctor to do the blood test for gluten sensitivity and I'll include the image of the results he sent me. But basically it's saying I don't have any problem with gluten. I have had some pain under my left rib off and on for a while and that pain wasn't present at all during my month off gluten. I'm just wondering if you can have such low results, totally not sensitive to gluten, on these tests, and possibly have gluten-related neurological symptoms? Any advice related to gluten would be very much appreciated.

 

Carla

testresults.webp

I think the logical thought would be that the symptoms, which appeared with a head injury, are related to the head injury.  

 

Also, those are not tests for Celiac disease.  Maybe you should see a MD neurologist? 

Ennis-TX Grand Master
Ennis-TX
Posted
3 hours ago, cari83 said:

Hello,

I developed scary neurological symptoms (tremor, muscle jerks) nearly a year ago only a day or two after a head injury. It's very upsetting. Around the same time (6 or 7 days before symptoms started) I also went back on gluten after a month off gluten. I asked my doctor to do the blood test for gluten sensitivity and I'll include the image of the results he sent me. But basically it's saying I don't have any problem with gluten. I have had some pain under my left rib off and on for a while and that pain wasn't present at all during my month off gluten. I'm just wondering if you can have such low results, totally not sensitive to gluten, on these tests, and possibly have gluten-related neurological symptoms? Any advice related to gluten would be very much appreciated.

 

Carla

testresults.webp

In addition I would like to say with celiac testing if you get a actual celiac test.....you have to be eating gluten for 8-12 weeks prior or it nullifies the test. If you were gluten free a month prior then just started up on gluten before any test for celiac the test would be invalid.
If you concerned for celiac you have to eat gluten daily then get tested here is some info
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

Also yes gluten can cause all kinds of issues with some, it is often reffered to as gluten ataxia. I would say your head injury is you likely cause but if you wish to check all the bases do feel free. My ataxia causes motor control issues, brain damage, nerve damge.  Here are some info on it
https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia/?fbclid=IwAR1iTd-xI0pXBrnWbARsjnQifa-zMktAszSxWbcJA9l7T8Smu1F3T9RDwn8
https://www.medicalnewstoday.com/articles/320730.php
 

cari83 Rookie
cari83
Posted
  • Author

Okay, well...it will probably be impossible getting the correct tests run in the country where I'm living. I live abroad. If the doctor doesn't even know the right tests to run, there doesn't seem much hope of getting a correct diagnosis. I am aware that the head injury is most-likely the cause. It's just that the doctors here do not know what they're doing, as evidenced by the doctor who ran the wrong celiac test. So I wasn't that eager to visit a neurologist and do the 3-minute appointment thing that they do in this country, where they don't listen to symptoms, etc., and misdiagnosis you because they don't care to run the right tests. Also it was many months ago that I went back on gluten so the 8-12 weeks thing isn't an issue.

cyclinglady Grand Master
cyclinglady
Posted

Why did you go off gluten in the first place (prior to your head injury)?  

Here are the actual celiac tests:

http://www.cureceliacdisease.org/screening/

Do you have any classic risk factors for celiac disease?

https://www.beyondceliac.org/celiac-disease/risk-factors/

Do you have anemia?  

I found this blog (not sure it is credible), about digestion, the vagus nerve and head injuries (concussion).  The blog is about SIBO which is a small bacterial overgrowth.  Not saying you have SIBO but  the site explains concussions and the vagus nerve.  If your vagus nerve was damaged, it could explain GI issues after your head injury.  Something to research:

http://www.sibodoctors.ca/blog/2016/10/12/the-sibo-concussion-connection

I hope you are able to figure it out. 

cari83 Rookie
cari83
Posted
  • Author

Thank you for your response, cyclinglady. My stomach pain (under my left rib) started before the head injury, and was hurting off-and-on for a couple of years, so I decided to try a gluten-free diet since doctors all had different answers about what it was. The pain didn't happen during that gluten-free month.

I was diagnosed with GERD as a teenager and was anemic once during my teens. Recently my ferritin, which is iron I guess, tested as 18. Normal is 13-150 so I think 18 is kind of low. My vitamin D is always pretty low, last test said 29, in 2017 it tested as 26 even though I'd been taking 5,000IU of Vitamin D daily for 3 months right before that test. In 2013 my vitamin D tested as 12. (I stopped being vegetarian in 2011, so maybe that's why it was so low? But it's still insufficient even now.) My B12, most recent test in 2018, was not a deficiency but it was 278 which is "suboptimal" my doctor said. So since I never really feel super healthy, and I'd had that gastrointestinal pain, I had wanted to try a gluten-free diet.

Thank you for the link to the correct screening tests. I'm not sure what test my doctor gave me or why. Celiac disease is not common in this country at all, in fact I found a study from 2013 talking about a case of it that said, "this is a first case of celiac disease" in the country. :( So I guess I shouldn't be surprised if the doctor is running the wrong tests.

 

 

 

cyclinglady Grand Master
cyclinglady
Posted

Since it might be impossible to get the needed celiac disease blood tests in the country you are residing in, then consider the gluten free diet since you noticed improvement while you were on it prior to your head injury.  Celiac disease is genetic.  Some 30% carries the genes that may develop into celiac disease.  You might consider genetic testing to rule out celiac disease.  The country you are in might not have many people or even none with these genes.  Hence, the lack of knowledge.  

While I am firmly diagnosed, my hubby is not.  He went gluten free 12 years prior to my diagnosis per the poor advice of two medical doctors.  Now, he refuses to do a gluten challenge and I can not blame him.  You can go gluten free on your own. Expect that if your neurological issues are related to celiac disease, it may take years to resolve.  Every gluten exposure can set you back, so strict adherence is critical, especially with neurological issues.    But it can be done!  If your neurological injuries are not related to celiac disease, just eating a very clean diet that does not cause inflammation may support healing.  So avoid gluten-free cookies and cakes!  Focus on single ingredients that have been minimally processed.  

In six months ask for those biomarkers to be rechecked (ferritin, etc.).  If improved without supplementation, it may indicate you are on the right path.  

Keep reading through the forum to get valuable tips on managing the diet.  Ask questions.  We are here to help!  

 

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cari83 Rookie
cari83
Posted
  • Author

Thank you again for your advice, cyclinglady. :) I don't blame your husband for not wanting to try a gluten challenge, if being gluten free helps him. I'm going to try gluten free again and see if it helps at all. 

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