Failed gluten challenge due to nerve pain??

[EF-ATL]

Well, with a GI doc's encouragement, I started a gluten challenge to be tested for celiac, as I was already living a mostly (though not strictly) gluten-free life. I have always been underweight, with hormonal and anxiety issues, and a couple weeks ago my knees and elbows broke out in itchy bumps. So it was time to get serious about a diagnosis.

The doc said 12 weeks was ideal, but 2 weeks could still be helpful if it's all I could stand or I was worried about coronavirus. Y'all .... I barely made it a week. On day 1, I started noticing tingling in my arms and legs, and by the third night I couldn't sleep from the feelings of pinched nerves in my limbs and my hands falling asleep! After a few sleepless nights and feeling like, "What am I doing to my body??" I threw in the towel. Took the blood test anyway but am expecting negative. But neuropathy can be an indicator of celiac, yes?? Or at least a vicious gluten intolerance? Today is my first day back off gluten, and I'm really hoping to get normal feeling back in my extremities soon.

[GFinDC]

Hi Et,

Yes, nerve pain/damage can be a result of celiac.   There are possible nerve issues due to malabsorption of nutrients and also possible direct attack by antibodies.

[cyclinglady]

Less than 20 years ago, celiac disease was thought to only to affect the small intestine.  Celiac researchers know now that it is systemic and can affect other organs and body systems.  Some celiacs have less small intestinal damage, but have skin issues.  The Dermatitis Herpetiformis rash is celiac disease.  Some celiacs are diagnosed via skin biopsies.  No need for a small intestinal biopsy or even the blood tests.  The antibodies are found in the skin just adjacent to the lesions (outbreak).  Some celiacs develop what is called gluten ataxia. This affects nerves and the brain.  
 

The problem is that most doctors, still think celiac disease just affects the gut.  It is getting better though.  Thankfully, Dr. Shelia Crowe was the head of the GI Association a few years ago and celiac disease is her specialty (I think her Mother-in-Law has celiac disease).  So, more GI’s are becoming knowledgeable if they keep up with research.  A bit hard for PCPs who must cover all illnesses.  Still, Dr. Google makes research much easier.  
 

Is your doctor willing to give you a diagnosis based on your symptoms?  If you need a firm diagnosis, go for the skin biopsy.  Chances are the rash is going to come back because dietary mistakes will be made eventually. Otherwise, remain gluten-free and heal!  

Edited June 26, 2020 by cyclinglady

[Awol cast iron stomach]

I didn't finish my 2 week challenge. I technically am NCGS in my records, but DH comes back every misfortunate cc . My cousin is a gold standard celiac. So clearly I'm on the spectrum. I suspect I'm a DH.

Just a few lowlights of my challenge:

I had to pull my car over many times during my challenge as I was nauseous and ready to vomit.

My boss sent me home as I looked horrible, she was concerned, and we had a slow shift. 

Another day I had to pull over and call in sick minutes before my shift as I had soiled my second set of pants on my commute. I had already stopped and changed prior. I didn't bring a third. I knew quite frankly if I couldn't make it through my commute to work I clearly would not make it through my shift. My boss got a friend's spouse to begin to take my shifts as I likely was not going to be reliable.

I stopped driving and had to walk to my local bakery to gluten myself. I fell off curbs as I clearly had increasing cns & brain  issues.

My mood became very negative, irritable, and weepy. My family knew my diagnosis was coming. They  had determined they were all going gluten-free at this point as clearly if it wasn't celiac, they didn't want me eating gluten. My arm was involuntarily shaking and tremoringband my husband holding my hand did not stop it.

I lost feeling in my feet, left arm, etc. Simultaneous shooting nerve and numb in same forearm.This symptom was  why I initially went gluten-free years before. Migraines, muscle pain list goes on. Gi issues of course. I always had those as I was misdiagnosed IBS for 20 plus years.

This was all by day 6. 

I was sad I didn't get my Chicago deep dish pizza gluten self  meal, but knew I would be eating it in the bathroom . No thanks, I have boundaries and I reached it.

My mood became so bad and I was so ill. I thought I can't finish this past day 6 as my children need a mother to raise them. No gluten challenge was worth my husband and children losing their wife/mom to an illness that does this to her. 

Current date I got cc in mid April my DH eruption lasted 7 weeks during our stay at home order.  I still am discolored in that erupted area although my skin is smooth.

So yes to your question and then some . Gluten can do horrible things to your body if you are celiac/DH/ NCGS.

Welcome to the forum and best wishes on your path to healing.

 

[EF-ATL]

12 hours ago, Awol cast iron stomach said:

I didn't finish my 2 week challenge. I technically am NCGS in my records, but DH comes back every misfortunate cc . My cousin is a gold standard celiac. So clearly I'm on the spectrum. I suspect I'm a DH.

Just a few lowlights of my challenge:

I had to pull my car over many times during my challenge as I was nauseous and ready to vomit.

My boss sent me home as I looked horrible, she was concerned, and we had a slow shift. 

Another day I had to pull over and call in sick minutes before my shift as I had soiled my second set of pants on my commute. I had already stopped and changed prior. I didn't bring a third. I knew quite frankly if I couldn't make it through my commute to work I clearly would not make it through my shift. My boss got a friend's spouse to begin to take my shifts as I likely was not going to be reliable.

I stopped driving and had to walk to my local bakery to gluten myself. I fell off curbs as I clearly had increasing cns & brain  issues.

My mood became very negative, irritable, and weepy. My family knew my diagnosis was coming. They  had determined they were all going gluten-free at this point as clearly if it wasn't celiac, they didn't want me eating gluten. My arm was involuntarily shaking and tremoringband my husband holding my hand did not stop it.

I lost feeling in my feet, left arm, etc. Simultaneous shooting nerve and numb in same forearm.This symptom was  why I initially went gluten-free years before. Migraines, muscle pain list goes on. Gi issues of course. I always had those as I was misdiagnosed IBS for 20 plus years.

This was all by day 6. 

I was sad I didn't get my Chicago deep dish pizza gluten self  meal, but knew I would be eating it in the bathroom . No thanks, I have boundaries and I reached it.

My mood became so bad and I was so ill. I thought I can't finish this past day 6 as my children need a mother to raise them. No gluten challenge was worth my husband and children losing their wife/mom to an illness that does this to her. 

Current date I got cc in mid April my DH eruption lasted 7 weeks during our stay at home order.  I still am discolored in that erupted area although my skin is smooth.

So yes to your question and then some . Gluten can do horrible things to your body if you are celiac/DH/ NCGS.

Welcome to the forum and best wishes on your path to healing.

 

Oh my goodness that sounds like hell. I'm so sorry you went through that. I have two little kids too, so I hear you, a possible diagnosis wasn't worth not being able to be a good mother to them during "the challenge." It is just so crazy to me that the people who need the diagnosis the most often can't get it (if they've already gone gluten free). We are essentially being asked to eat poison. 

[cristiana]

On 6/26/2020 at 1:41 PM, EF_ATL said:

On day 1, I started noticing tingling in my arms and legs....   my hands falling asleep.

But neuropathy can be an indicator of celiac, yes?? 

Just to say I had tingling arms and legs, hands falling asleep (both arms numb on waking), twitching and buzzing.   

I wondered if I'd ever get better.  It comes back from time to time but thankfully never for very long.   

I do think it may have also been connected to low B12, ferritin and magnesium.  My doctor asked me to supplement ferritin, but I took it into my own hands to supplement B12 and magnesium.  

[Lyns5201]

On 6/28/2020 at 5:02 PM, Awol cast iron stomach said:

I didn't finish my 2 week challenge. I technically am NCGS in my records, but DH comes back every misfortunate cc . My cousin is a gold standard celiac. So clearly I'm on the spectrum. I suspect I'm a DH.

Just a few lowlights of my challenge:

I had to pull my car over many times during my challenge as I was nauseous and ready to vomit.

My boss sent me home as I looked horrible, she was concerned, and we had a slow shift. 

Another day I had to pull over and call in sick minutes before my shift as I had soiled my second set of pants on my commute. I had already stopped and changed prior. I didn't bring a third. I knew quite frankly if I couldn't make it through my commute to work I clearly would not make it through my shift. My boss got a friend's spouse to begin to take my shifts as I likely was not going to be reliable.

I stopped driving and had to walk to my local bakery to gluten myself. I fell off curbs as I clearly had increasing cns & brain  issues.

My mood became very negative, irritable, and weepy. My family knew my diagnosis was coming. They  had determined they were all going gluten-free at this point as clearly if it wasn't celiac, they didn't want me eating gluten. My arm was involuntarily shaking and tremoringband my husband holding my hand did not stop it.

I lost feeling in my feet, left arm, etc. Simultaneous shooting nerve and numb in same forearm.This symptom was  why I initially went gluten-free years before. Migraines, muscle pain list goes on. Gi issues of course. I always had those as I was misdiagnosed IBS for 20 plus years.

This was all by day 6. 

I was sad I didn't get my Chicago deep dish pizza gluten self  meal, but knew I would be eating it in the bathroom . No thanks, I have boundaries and I reached it.

My mood became so bad and I was so ill. I thought I can't finish this past day 6 as my children need a mother to raise them. No gluten challenge was worth my husband and children losing their wife/mom to an illness that does this to her. 

Current date I got cc in mid April my DH eruption lasted 7 weeks during our stay at home order.  I still am discolored in that erupted area although my skin is smooth.

So yes to your question and then some . Gluten can do horrible things to your body if you are celiac/DH/ NCGS.

Welcome to the forum and best wishes on your path to healing.

 

What where all the types of symptoms how long does it take for your nerve pain symptoms to go away ?im almost 4 months golyten free and still suffering from nerve pain,headache/eye ache,sharp pains and electric shock feeling in different places…

[Mira333]

On 6/26/2020 at 7:41 AM, EF_ATL said:

Well, with a GI doc's encouragement, I started a gluten challenge to be tested for celiac, as I was already living a mostly (though not strictly) gluten-free life. I have always been underweight, with hormonal and anxiety issues, and a couple weeks ago my knees and elbows broke out in itchy bumps. So it was time to get serious about a diagnosis.

The doc said 12 weeks was ideal, but 2 weeks could still be helpful if it's all I could stand or I was worried about coronavirus. Y'all .... I barely made it a week. On day 1, I started noticing tingling in my arms and legs, and by the third night I couldn't sleep from the feelings of pinched nerves in my limbs and my hands falling asleep! After a few sleepless nights and feeling like, "What am I doing to my body??" I threw in the towel. Took the blood test anyway but am expecting negative. But neuropathy can be an indicator of celiac, yes?? Or at least a vicious gluten intolerance? Today is my first day back off gluten, and I'm really hoping to get normal feeling back in my extremities soon.

Hello EF, 

I had this same exact reaction to a glutening and after 4 days of hands falling asleep I went to the ER. The ER checked me for other things and did a CT to make sure there was no spinal compression and sent me home with steroids. I had been gluten free for 4 months when this happened. My doctor suggested a gluten challenge recently and I said no way. Were you ever diagnosed or did you just continue the gluten free diet? Did your hands ever go back entirely to normal? I worry some of this nerve damage is not reversible.

[trents]

Welcome to the forum, Mira333!

I would point out to you that you replied to a post that is almost 2 hears old. So you may not get a response.

Unfortunately, it is sometimes the case that gluten-related nerve damage is not completely reversible. But let me ask, are you on vitamin and mineral supplementation? Neurological issues can be tied to vitamin and mineral deficiencies and vitamin and mineral deficiencies are typical with celiac disease. We commonly recommend taking a high potency B-complex along with D3 (5000iu would be my recommendation).