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Neurological Symptoms?
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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:

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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.

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

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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.

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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.

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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...

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

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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."

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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!

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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

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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 :)

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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).

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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!

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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...

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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...

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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
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