I don’t understand

[Solafide3]

Hi everyone,

I apologize if this is a long post, but I am in desperate need of help. I started having neurological symptoms in Dec 2018. Muscle twitching, muscle weakness, balance problems, joint and muscle pain. Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity.

1.This is where my first problem starts. Other doctors have told me that NCGS isn’t real. I have also read the blood tests aren’t reliable, but this neurologist is swearing by it?

2.I admit I haven’t managed to stay gluten free for a whole 2 weeks yet. It seems that my muscle twitching (I have no vitamin deficiencies) gets way worse when I stop eating gluten, and gets better when I reintroduce gluten. Is this some sort of weird withdrawal?

3.I have a dull ache that only happens on the right side of my body. On my palm, my butt bone, and bottom of my foot. It also feels like my ankle and wrist are weak when I walk. Does anybody else have this?

I will be so grateful if someone can answer these questions. I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs. I don’t mean to be dramatic but I just can’t function with this worry. Thank you

Erica

[cyclinglady]

Welcome!  

I am sorry you are struggling.

There is no test for Non-Celiac Gluten Sensitivity (or Intolerance).  Doctors usually come to a NCGS diagnosis after firmly ruling out celiac disease (blood tests and intestinal biopsies).  Blood tests alone are not enough since some celiacs (about 10%) have negative blood tests yet still have intestinal damage.  The celiac rash, Dermatitis Herpetiformis can also be hard to get positive blood tests.  

Your doctor may be suspecting Gluten Ataxia.  GS is relatively new and you are lucky your doctor has considered it.  

It does not hurt to trial the diet.  It will not harm you unless you eat gluten-free junk food.  Focus on non-processed foods as much as possible and DO NOT EAT OUT until you see improvement.  Gluten Ataxia damages the neurological system which takes much longer to heal.  Most celiacs take a year to heal due to learning the diet. Ataxia and DH sufferers can take much longer.  But you can get well.  If you have Gluten Ataxia, at least it is treatable — no gluten.  

Many celiacs have withdrawals from gluten.  It gets better within a few weeks.  I think you need to be patient which is really hard.  

Learn all that you can about the diet and you have to be really strict from what I read.  What am I saying?  I consider myself to be very strict since active celiac flare ups impact or aggravate my other autoimmune disorders. 

Eating a clean gluten-free diet might help you even if you do not have ataxia.  Check out the Autoimmune Paleo Diet too.  It is gluten free and seems to help people who are ill.  Good food can not hurt.  No bad side effects!  

I sincerely hope you do not have ALS.  

 

 

[Ennis-TX]

3 hours ago, Solafide3 said:

Hi everyone,

I apologize if this is a long post, but I am in desperate need of help. I started having neurological symptoms in Dec 2018. Muscle twitching, muscle weakness, balance problems, joint and muscle pain. Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity.

1.This is where my first problem starts. Other doctors have told me that NCGS isn’t real. I have also read the blood tests aren’t reliable, but this neurologist is swearing by it?

2.I admit I haven’t managed to stay gluten free for a whole 2 weeks yet. It seems that my muscle twitching (I have no vitamin deficiencies) gets way worse when I stop eating gluten, and gets better when I reintroduce gluten. Is this some sort of weird withdrawal?

3.I have a dull ache that only happens on the right side of my body. On my palm, my butt bone, and bottom of my foot. It also feels like my ankle and wrist are weak when I walk. Does anybody else have this?

I will be so grateful if someone can answer these questions. I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs. I don’t mean to be dramatic but I just can’t function with this worry. Thank you

Erica

I have celiac but ignored the issues til I started having gluten ataxia issues. It really is the scariest thing in the world when your own body does not react like it should and starts turning against you and bugging out. My damage became quite severe, I lost the ability to do some things I even went to college for, I lost some feelings for hot/cold and touch in my extremities for a few years, and some other things. There are some withdrawal issues and it seems get better and worse off and on. One thing to consider is that many Gluten foods are fortified with B-vitamins, Magnesium, etc. These extra vitamins can help cover symptoms, gluten free food is not fortified so you need to eat a rounded whole food diet and or supplement for B-vitamins, Vitamin D, and especially Magnesium if your having nerve issues.

I was adopted and in my small town in Texas I am sort of the odd ball out, and lost many friends and extended family. I have found a few local people who also have issues with gluten when I started selling gluten free and paleo baked goods and meals at farmers markets. I found these forums, local celiac support groups, etc. Many Celiac groups also have NCGS people in them as they also have to adhere to a gluten free diet.