Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Neurological Symptoms?
0

15 posts in this topic

Hi! I'm new to these forums (though I've lurked the last couple years), and I'm hoping you might have some advice, insight, or experiences to share with me.

My husband was "diagnosed" with celiac disease in late 2009. His blood tests were ordered by our family practitioner and they came back positive. We were referred to a local GI doc. The GI told my husband that it was fine to continue the gluten-free diet prior to the endoscopy (we now know that is not the case). The doc also took only 1 or 2 samples of the small intestine. The endoscopy came back negative. Our family practitioner told us she was certain my husband had it, and she was willing to refer us to a GI doctor in a local large city, but since we already had a $1000 bill from a procedure that was done incorrectly, and it was obvious the gluten-free diet was working, we declined.

Since then, my husband has maintained a strict gluten-free diet with no "cheating." He recently began having some neurological symptoms, mostly intermittent numbness/tingling in his arms and numbness and pain in his legs (especially the left). We've found a new GI and we're also seeing a neurologist.

Thus far, the neurologist had ordered a brain/spine MRI, which came back negative. Blood levels of B12 are normal (though he does have low Vitamin D levels). The neuro is scheduling him for an EMG. He wanted to know if our new GI was going to confirm the celiac diagnosis, because celiac can be a cause of nerve damage. We had discussed the possibility with our GI. He ran a celiac panel, which came back negative, as was expected since my husband consumes no gluten whatsoever. If he was to do an endoscopy, he'd have to do a gluten challenge, and I have reservations. Nerve damage is nerve damage---the gluten-free diet isn't solving the numbness issues, so do we really need a diagnosis in terms of how we'll treat the nerve problems? My husband will get really sick---I don't know if it's worth affecting his job performance (he's at a new job and there's no paid time off for him, plus he's in the running to move up pretty quickly), let alone the fact that we have three small children...I'm just wondering if having that official diagnosis is worth the path to get there, considering it doesn't really change anything that we'll be doing.

Anyway, it feels like we're hanging in limbo with no answers and it's frustrating. We're trying to figure out what's causing these nerve issues but we have no answers thus far. Also, if somehow it is celiac-related, obviously my husband is following his diet, so it doesn't look like there's much promise of the diet fixing the nerve issues.

If you have any experience, please share! I don't even know how to continue this post because that's how up-in-the-air we are right now. :wacko:

0

Share this post


Link to post
Share on other sites


Ads by Google:

It may be that his numbness is a symptom of cross contamination from gluten. Some people have severe neuro effects from gluten, and just because he didn't have these symptoms before doesn't mean he can't have them now.

Does he exercise? If he overexercises it could be a problem. lack of exercise can also cause oroblems. Has he seen a good massage therapist? Could it be a pinched nerve, etc?

It is also common, in celiac recovery, to go through stages. This could be a stage.

Could be a vitamin or mineral deficiency. Has he had a thorough vitamin panel? Most Celiacs have a few deficiencies that need supplementing - food alone usually won't resolve the deficiency.

It could be another food intolerance. That's common during healing. Some are temporary, others permanent.

The one thing Ive learned from this whole thing is to preface how I feel or my health with "right now". It helps to keep a journal - food, symptoms, etc. a journal can help him pinpoint what/when things happen.

Good luck to both of you.

1

Share this post


Link to post
Share on other sites

?diabetes?low vitamin B1, what was the B12 level? is he supplementing Vitamin D??

0

Share this post


Link to post
Share on other sites

It may be that his numbness is a symptom of cross contamination from gluten. Some people have severe neuro effects from gluten, and just because he didn't have these symptoms before doesn't mean he can't have them now.

It helps to keep a journal - food, symptoms, etc. a journal can help him pinpoint what/when things happen.

Pricklypear gave some good advice and suggestions of possibilities. I wanted to elaborate on the two points above. That was what happened to me. Cross contamination was the problem and a food/symptom journal helped me figure it out. We needed a gluten free household for my son and I to become symptoms free. We also went on a diet of unprocessed foods until we healed and then we add new item one per week so that we can track symptoms. We now have a few processed foods that we can eat. We had problems with even some produce.

My neurological symptoms went away when I got gluten free enough.

Some celiacs are sensitive to lower levels of gluten than others so that the food that others eat without issues can cause problems for some.

0

Share this post


Link to post
Share on other sites

Hi there, my neuro told me that low vit D can cause numbness and your hubby is low on vit D, so hope he's supplementing at a sensible high level. I've also read about vit D causing numbness in my research. I experience extreme numbness every day, getting my vit D level checked next week. I've only been gluten free for a couple of weeks.

0

Share this post


Link to post
Share on other sites




I have a very different set of neuro symptoms, but mine are definitely gluten related. They include transient anteretrograde amnesia affecting episodal memory (I don't remember a damn thing that happens), sensitivity to light, sound and movement (similar to visual migraines, but they last until the gluten clears my body), foggy thinking (I get stupid) and difficulty forming sentences. The symptoms start within 10 minutes of being glutened. The only blessing is that it makes it fairly easy to track down the source of gluten.

FWIW, the gluten free Rice Chex are definitely not gluten free...

0

Share this post


Link to post
Share on other sites

My neurological symptoms ( including ataxia ) were causes by ingesting soy .

0

Share this post


Link to post
Share on other sites

I had almost identical symptoms to your husband last year and had a full neurologic work-up for multiple sclerosis, lyme, etc. It ended up being due to gluten cross-contamination as well. I was strictly gluten free in a household of little gluten eaters, and even though I had a separate toaster, wash rag, pasta strainer, etc. it was not enough. I also had to stop all gluten-free processed foods and my neuro symptoms are finally gone (they did come back 1x following cross contamination from a restaurant). I have learned the hard way that I am "super sensitive."

0

Share this post


Link to post
Share on other sites

I just re-read your post. I was diagnosed based on family hx, symptoms, and sky high celiac antibodies (no biopsy). When I developed neurological symptoms I had negative celiac antibodies because of being gluten-free. I was offered an endoscopy and biopsy but I declined because I knew that my body would not be able to handle a gluten challenge (plus I couldn't see the point of paying money for the test when no matter what the result, I would continue to avoid gluten for life).

Gluten sensitivity (lumping together both celiac disease and non celiac gluten sensitivity) is the 3rd most common cause of peripheral neuropathy these days. When I was diagnosed with Celiac Disease 3 years ago I had no idea that I was risk of neurologic complications if I followed the diet. Now I know better!

0

Share this post


Link to post
Share on other sites

My daughter was diagnosed with celiac through bloodwork at her GI. The celiac panel was done as rule out because she had so many different types of vague symptoms including tremors in her hands. The endoscopy was done before the celiac panel came back (I feel they did not believe she had celiac) and we were told the endoscopy was normal showing no signs of damage. When her celiac panel came back, she was told her numbers were the highest they had seen for a patient. Since the first endoscopy was done before the positive blood test, they asked her to come back for a repeat endoscopy at their own expense and this time they took samples. Once again, the endoscopy came back normal even though her blood test was highly positive. We were told they felt she was a mystery. I guess my point in all this is that just because an endoscopy comes back negative it does not mean a person is not celiac. I have always found it troubling that medical providers find this to be the "gold standard" in diagnosis. Celiac can cause damage in insidious ways other than GI damage and the damage to intestines can be so patchy. I would think the neurologist could accept the positive blood test and positive response to the diet. My daughter could not go back on gluten now even if she tried because now that she has removed it from her diet even the tiniest amount makes her so ill she feels as though she is digesting razor blades. Thank goodness she does not get cc'd very often. I hope your husband stays away from gluten, especially since he is having neurological symptoms. It always bothers me when physicians want someone to intentionally make themselves sick by eating gluten just so they can prove the obvious through their testing. Medicine is not and never will be an exact science

0

Share this post


Link to post
Share on other sites

I also want to add that I wish you and your husband the best and I am sure that you will get to the bottom of this :)

0

Share this post


Link to post
Share on other sites

After reading ever1s post I started silently crying... I too have the hand tremors, mental fogginess, and see shadows out of the corners of my eyes. I'm glad I finally went to my Doc/friend and told her and she's running sooo many blood panels on me. Thank y'all for opening my eyes and showing me I'm not alone( even tho my older sister and I both have celiac disease, but we never talk about it).

1

Share this post


Link to post
Share on other sites

Just want to put this out there...see if neuro will run panels to check for other viruses active in body. I have nerve damage due to that very reason. It is painful and dibilitating....I take an anti-viral med along with lyrica and cymbalta to combat the pain...after 4 years the ebv seems to be down....however, I recently decreased my med and the pain has become more active...so going to see about increasing again! I orginally tested postive for active viruses of EBV, chicken pox, and Herpes Virus....what happens is your body is attacking itself so all the viruses you have immunity to...become active and attack the nerves....it is awful!

0

Share this post


Link to post
Share on other sites

Do you mean the Chex marked Gluten Free? My son (20) uses the cereal for snack food and goes through boxes of it!

 

Hi! I'm new to these forums (though I've lurked the last couple years), and I'm hoping you might have some advice, insight, or experiences to share with me.

My husband was "diagnosed" with celiac disease in late 2009. His blood tests were ordered by our family practitioner and they came back positive. We were referred to a local GI doc. The GI told my husband that it was fine to continue the gluten-free diet prior to the endoscopy (we now know that is not the case). The doc also took only 1 or 2 samples of the small intestine. The endoscopy came back negative. Our family practitioner told us she was certain my husband had it, and she was willing to refer us to a GI doctor in a local large city, but since we already had a $1000 bill from a procedure that was done incorrectly, and it was obvious the gluten-free diet was working, we declined.

Since then, my husband has maintained a strict gluten-free diet with no "cheating." He recently began having some neurological symptoms, mostly intermittent numbness/tingling in his arms and numbness and pain in his legs (especially the left). We've found a new GI and we're also seeing a neurologist.

Thus far, the neurologist had ordered a brain/spine MRI, which came back negative. Blood levels of B12 are normal (though he does have low Vitamin D levels). The neuro is scheduling him for an EMG. He wanted to know if our new GI was going to confirm the celiac diagnosis, because celiac can be a cause of nerve damage. We had discussed the possibility with our GI. He ran a celiac panel, which came back negative, as was expected since my husband consumes no gluten whatsoever. If he was to do an endoscopy, he'd have to do a gluten challenge, and I have reservations. Nerve damage is nerve damage---the gluten-free diet isn't solving the numbness issues, so do we really need a diagnosis in terms of how we'll treat the nerve problems? My husband will get really sick---I don't know if it's worth affecting his job performance (he's at a new job and there's no paid time off for him, plus he's in the running to move up pretty quickly), let alone the fact that we have three small children...I'm just wondering if having that official diagnosis is worth the path to get there, considering it doesn't really change anything that we'll be doing.

Anyway, it feels like we're hanging in limbo with no answers and it's frustrating. We're trying to figure out what's causing these nerve issues but we have no answers thus far. Also, if somehow it is celiac-related, obviously my husband is following his diet, so it doesn't look like there's much promise of the diet fixing the nerve issues.

If you have any experience, please share! I don't even know how to continue this post because that's how up-in-the-air we are right now. :wacko:

 

Hi, I'm so sorry for your struggle. I gave up on the tests myself as we had gone through out of pocket expenses for so many tests before a doctor thought of Celiac. My endoscopy was negative, blood test etc. I found a GI doc who believed me and we moved on to keep up on treatment. As to the neurological Symptoms it's a roller coaster for me. I think it's related to contamination as I find tiny exposure and more than one hit I have tingling, shakes, spasms and at it's worse need assistance to go downstairs. Strangely upstairs isn't as bad. I've come to understand my ability to process and intake through my small intestine is permanently impaired and any tiny ingestion prevents all those vitamins that are needed for the mechanics of movement and nerves. I have had success with liquid supplements and take Gabapentin for nerve pain. Calcium and magnesium are big for me as we'll as the B s. It's alot of hypervigilance. Good luck.

I have a very different set of neuro symptoms, but mine are definitely gluten related. They include transient anteretrograde amnesia affecting episodal memory (I don't remember a damn thing that happens), sensitivity to light, sound and movement (similar to visual migraines, but they last until the gluten clears my body), foggy thinking (I get stupid) and difficulty forming sentences. The symptoms start within 10 minutes of being glutened. The only blessing is that it makes it fairly easy to track down the source of gluten.

FWIW, the gluten free Rice Chex are definitely not gluten free...

0

Share this post


Link to post
Share on other sites

FWIW, the gluten free Rice Chex are definitely not gluten free...

That comment is completely off-topic, but also offers nothing to back it up with proof. The drive-by shooter, JoH, has not been back in over a month, so this is probably a dead end.

Now, if we want to go back to the original subject of Neurological Symptoms...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,098
    • Total Posts
      920,348
  • Topics

  • Posts

    • I eat them with no issues and know several other Celiacs that eat them with no issue.
    • I am sorry that you are sick! i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.   I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years. If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   
    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
    • I have also reacted to various Planters products, believing them to be safe because gluten is not listed in the allergens but have had almost identical reactions to yours.  It did not occur to me that I might be getting zapped from them until just recently when I ate some of their Salt and Vinegar almonds and became really ill and then recognized that I had reacted to them before. I have notice in the past few months that the 'Hermans' brand nuts, which have never mentioned wheat in their allergens now carries the 'processed in a plant that processes wheat' disclaimer.  It makes me wonder if all nuts are processed in the same manner and if all nuts and nut products should be considered unsafe? I know that I will not trust the Planters brand any longer regardless of whether wheat is listed or not.
    • I've heard some people say that they're gluten free, and some say they're not.. I had a container of planter's cashews that I ate a few days ago and I haven't been feeling that great since then. I thought I was fine, but yesterday I woke up with a headache and was feeling really gassy all day. Then since last night, every once in a while I'll have some stomach cramps. They last for a few minutes and then go away.. that has happened 3 or 4 times since last night. It seems weird that I wouldn't have a reaction right away though.. or at least within a few hours of eating them. I ate some on thursday and on friday, and I didn't really start to feel sick until saturday. It's been a while since I last got glutened though, so maybe my reaction has changed? Or maybe I'm being paranoid and I just ate too many cashews haha. But that's the only thing I've eaten in the past like 2 weeks that was different. Has anyone else had a problem with planter's nuts?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,133
    • Most Online
      1,763

    Newest Member
    Mycaringkidsmom
    Joined