Gluten Withdrawal? Ear Issues?

[basilicious]

Hi all,

I've previously posted about my negative blood panel and biopsy, but my doctors have told me I am definitely gluten sensitive and to go gluten-free for now. My gluten symptoms are both digestive and neurological, but for their respective spectrums of severity, my neurological symptoms are worse than my digestive symptoms. I am also waiting for my genetic test results and have an MRI and EEG scheduled in the next two weeks.

I've been gluten-free for almost exactly a month now, and while my digestive system seems to be normalizing pretty rapidly, my neurological and some other physical symptoms are lingering, and at times they are worse. Also, they are a bit more varied. For example, I've had an ear ache off and on for the last several months (which I generally ignored due to all the gluten stuff going on), but then this week I had an intensifying of ear pressure and ringing in my ears. I've also been getting very dizzy sitting at my desk - a different type of dizzy that I believe may be a kind of vertigo. My eyes feel kind of "flashy" - they feel like they're moving more rapidly, and everything around where my eyes are focused feel like they're moving a bit. Like my eyes aren't grounded or steady in the way they usually are. These symptoms are really anxiety provoking because they interfere with my concentration and create a different kind of brain fog. Also, I've had a recurring stiffness in my neck as well as neck and shoulder aches and head pains that are more dull and smaller in area. I've also had greater sensory sensitivity - feeling overstimulated more readily, blurring of my vision at times and really vivid dreams and night sweats on a few occasions.

Not to lead the responses, but could these symptoms be from gluten withdrawal? I have experienced them ever since the week of my biopsy, which was preceded by a moderate gluten challenge. It's odd, though, that some (the ear pressure, dizziness/eye issues and head pain) have intensified just this week.

I have also done some reading about TMJ/TMD, Eustachian Tube Dysfunction and Labyrinthitis. That was on a migraines board, and some also mentioned personal experiences being diagnosed with silent migraines, which I had never heard of. Any thoughts on these? My jaw has hurt on occasion but not in the last few weeks. Also, my balance is actually pretty good the vast majority of the time. I do get lightheaded pretty easily and get dizzy when I have to turn my head to talk to someone behind me.

Thanks very much for your input. (Also, I hope I posted this on the correct board! To me this is about as pre-diagnosis as you get, sadly.)

[basilicious]

Sorry for the double post, but I wanted to mention that after emailing my neurologist about my symptoms, she had someone from the office call and schedule me for a Videonystagmogram (VNG). It evaluates dizziness and vertigo. Thankfully I go in first thing on Monday morning. The test takes about two hours - yikes. Anyone have any experience with it? I wear contacts, and apparently I can't wear them during the test, which is a little frustrating. Anyway, wanted to mention this update...

[ciamarie]

I would suspect it may be at least partially due to withdrawal, and your body adjusting to less inflammation. However, it may point to nutritional deficiencies (s?) such as B12, and/or issues with excitotoxins in your diet; namely aspartame and / or msg. I'd suspect you probably avoid those anyway, but thought I'd throw it out there.

I also have issues with ringing in my ears, some days more than others (along with DH which is mostly controlled now...), and I have noticed a correlation to diet. I really hope to have that issue resolve soon, too! But dizziness is pretty much gone since I've been gluten-free.

[Avalon451]

Those sound like scary symptoms. I hope you get some answers on Monday.

I just wanted to say that the flashy vision thing reminds me of my ocular migraines. Is that the same thing as "silent" migraines? I was surprised as anyone to find out that ocular migraines are really migraines, but they don't always hurt. Mine start as a blurry spot in the center of my vision-- can't focus or read because the center is blurred out-- then it spreads in a ring formation out to the edges of my vision. The edge of the line is blurry/flashy. It makes me disoriented for hours afterward. There is more information online, with descriptions, etc. They normally don't last long (20-40 minutes, maybe?) but they leave you feeling disoriented and stressed. My GI doc said that they can be associated with celiac.

[Bubba's Mom]

Hi all,

I've previously posted about my negative blood panel and biopsy, but my doctors have told me I am definitely gluten sensitive and to go gluten-free for now. My gluten symptoms are both digestive and neurological, but for their respective spectrums of severity, my neurological symptoms are worse than my digestive symptoms. I am also waiting for my genetic test results and have an MRI and EEG scheduled in the next two weeks.

I've been gluten-free for almost exactly a month now, and while my digestive system seems to be normalizing pretty rapidly, my neurological and some other physical symptoms are lingering, and at times they are worse. Also, they are a bit more varied. For example, I've had an ear ache off and on for the last several months (which I generally ignored due to all the gluten stuff going on), but then this week I had an intensifying of ear pressure and ringing in my ears. I've also been getting very dizzy sitting at my desk - a different type of dizzy that I believe may be a kind of vertigo. My eyes feel kind of "flashy" - they feel like they're moving more rapidly, and everything around where my eyes are focused feel like they're moving a bit. Like my eyes aren't grounded or steady in the way they usually are. These symptoms are really anxiety provoking because they interfere with my concentration and create a different kind of brain fog. Also, I've had a recurring stiffness in my neck as well as neck and shoulder aches and head pains that are more dull and smaller in area. I've also had greater sensory sensitivity - feeling overstimulated more readily, blurring of my vision at times and really vivid dreams and night sweats on a few occasions.

Not to lead the responses, but could these symptoms be from gluten withdrawal? I have experienced them ever since the week of my biopsy, which was preceded by a moderate gluten challenge. It's odd, though, that some (the ear pressure, dizziness/eye issues and head pain) have intensified just this week.

I have also done some reading about TMJ/TMD, Eustachian Tube Dysfunction and Labyrinthitis. That was on a migraines board, and some also mentioned personal experiences being diagnosed with silent migraines, which I had never heard of. Any thoughts on these? My jaw has hurt on occasion but not in the last few weeks. Also, my balance is actually pretty good the vast majority of the time. I do get lightheaded pretty easily and get dizzy when I have to turn my head to talk to someone behind me.

Thanks very much for your input. (Also, I hope I posted this on the correct board! To me this is about as pre-diagnosis as you get, sadly.)

The pain in the ear symptom is what I get if I consume MSG or autolized yeast extract. It took me a while to figure it out. It takes away most brands of chicken broth.

I'm still experiencing the dizzyness and off-balance thing. I had a bad reaction to a gluten free lunch meat I got at a deli almost 6 weeks ago. I think it may have been cc? I still have it..but it's not as severe. I haven't had any tests for it,so I'm interested in your experience with it. I hope you'll share what the test is like..and they find answers for you.

I recommend keeping a food log of everything you eat, along with any symptoms. Many food reactions are delayed and having a log will help figure it out. That's how I knew my "ear migraines" were caused by MSG. Yours could be something different, like dairy or some coloring or chemical put in food?

[Kamma]

The squeezing pain in the ears, ear ringing and constant and severe vertigo were amongst the first symptoms that I had before suspecting that I was celiac. Then came the ataxia and balance issues.

I was tested with all the vestibular tests over a two year period and they showed no problems with my inner ears.

After diagnosis with celiac, I would still get the ringing, pain and vertigo but it lessened over time to the point where I hardly experience it. However, I do notice if I have overdid things physically, tired or get over heated, the symptoms come back for a couple of hours.

Hope this helps.

[basilicious]

Hi all, wanted to give an update about my ear and neuro problems. I still have only completed part of the VNG test, because apparently I have a lot of earwax, which interferes with the last portion of the test. I am a diligent Q-tip user, which is probably why I have this problem in the first place, but I have tried cleaning my ears 4 times with hydrogen peroxide and still could not complete the test when I went back to the neuro's office for a second attempt today. Pretty embarrassing, but maybe it provides a clue as to why I am having some problems.

Of greater importance, though, is that in the meantime I had my MRI and just got the results today. The results were communicated to me by the receptionist, and she said "The doctor says they're normal". What a relief, right? Not so fast. Then I asked for a copy of the results, and my relief was quickly replaced with confusion as I saw that I have a posterior fossa arachnoid cyst that is approximately a 2"x1"x1" oval. My neuro, who I had just seen once, is unfortunately now on maternity leave (good for her; bad for me), so I am reliant on the attending physicians and feel like I'm slipping through the cracks a little, as realistically I should have received these results several days ago.

When I got home, I did a little research online and read horror stories of people requiring brain surgery and shunts for this condition. Many people pointed to symptoms such as dizziness and vertigo. Not wanting to make myself sick with worry, I called back the doctor's office and asked to speak with a doctor to find out a little more context. (Is it big/small/common/rare? Do I need to monitor it and get another MRI at some point? etc...) The person I spoke with called me back a few minutes later and said that the doctor said that the cyst is not consistent with my neuro symptoms, to wait until I get my VNG and EEG results and then to schedule a follow-up appointment.

I did a search on here and have seen some older questions regarding a possible relationship between celiac and this type of cyst. Does anyone know anything about this?

[Fiddle-Faddle]

I have had very similar symptoms to what you describe.

Various doctors came up with various diagnoses: migraine disorder, cochlear hydrops, Meniere's Disease, Benign Positional Vertigo, etc.

Turned out, I had B12 deficiency, which probably started before I went off gluten, and was exacerbated by 10 years of Prilosec (for gluten-induced acid reflux). Those acid blockers block the acid we need to properly absorb B12, and the resulting deficiency can cause all kinds of neuro symptoms, including dizziness, tinnitus, fluctuating hearing loss, etc.

If you are taking acid blockers, DO NOT QUIT COLD TURKEY. You wil have a rebound reaction that will give you the worst acid reflux of your life. Wean off very slowly!

Vegans are also at extremely high risk for B12 deficiency, unless they are taking adequate suppplementation, as red meat is the primary dietary source of B12. (I always thought it was in leafy greens, but it isn't--the other B vitamins are, but not B12.)

Also, don't just start taking B12. Get a baseline test first, and be aware that what is currently considered "low normal" serum B12 in the US (200) is well below the standard in some other countries, and that anything under 500 can cause neuro problems.

The pernicious anemia websites recommend sublingual methylcobalamin (preferably with folic acid), NOT cyanocobalamin. The sublingual methylcobalamin is considered to be nearly as effective as B12 shots.

In my case there was also a viral component and a mechanical component.

The viral component was a reactivated chicken pox virus (herpes zoster) that, in my case, affected the spinal nerve that went closest to the ear. I had two "attacks" like you describe, several months apart. In both cases, these attacks exactly coincided with my husband's shingles attacks. (I've had shingles, decades ago--it's no picnic. UGH.) For whatever reason, this seemed to trigger my own virus to come out of dormancy, and caused/exacerbated symptoms, including nystagmus and that feeling of fullness in the ear.

For me, that was treated with L-lysine, which for me, works very well, but most people seem to need antivirals for effective treatment of persistent herpes virus (chicken pox/shingles is herpes zoster).

The mechanical component was vertebral misalignment in my neck (from wearing my arm in a sling for a month following a severe shoulder injury). When this was corrected by a chiropractor, the tinnitus, neck and head pain, and brain fog instantly disappeared and never returned. I was also given a stern lecture by the chiropractor about how sleeping with too many pillows, reading in bed, and hunching over a computer can screw up your neck.

There are migraine support forums and Meniere's support forums that provide quite a lot of information. The only thing is, both migraine disorder and Meniere's Disease are actually syndromes--meaning that they are a collection of symptoms of unknown origin. In both cases, these are frequently diagnosed as such, but without ruling out all possible causes of the same symptoms (like B12 deficiency, viral problems, vertebral misalignment, and other factors, like TMJ, food allergies, and systemic candida infection).

And not one of the doctors who tried to diagnose me with a syndrome bothered to consider any of those possibilities, let alone a combination.

Is your neuro the only neuro your insurance will cover? Seems to me an immediate follow-up visit is indicated. My neurologist did have some interesting supplement recommendations for migraine disorder: magnesium, B-complex vitamin supplement, butterbur, and coenzyme Q10. You might want to ask your neurologist about these.

Best of luck to you. These symptoms are very frightening. I don't know that anything I learned will correspond exactly to your situation (everybody's different), but at least it gives you a starting point to do more research.

[basilicious]

Fiddle-Faddle,

Thank you so much for sharing your experience with me! I am positive that I have low acid, so that may be contributing to this. I switched to a sublingual B-12 supplement but will check whether it is the kind you mentioned. Also, I definitely have a little eye twitching and involuntary movement - feels like my eyes have ADD but my brain doesn't (but that it will if my eyes keep it up; it's very distracting).

I have also been wondering if there is something viral going on, as I've been running a low-grade fever off and on for a few months...and since I am a desk worker, I have also been paying more attention to posture to hopefully avoid mechanical issues that you described. It is incredible how all this comes together. I am quite nervous because the cyst sounds like it is close to my cerebellum, and apparently nystagmus can be caused by cerebellar problems. I am not going to jump to conclusions, though - the remaining portion of my VNG should confirm whether my eye issues are actually nystagmus - but at least I will now be armed with a question about that when I have my appointment. Nystagmus can also be caused by a thiamine deficiency, and I JUST began taking fat-soluble thiamine this week because my mom read that it is extremely helpful in treating neuropathy...hopefully that will help, and I will definitely ask my doctor about supplements.

This information is so helpful, because I have been feeling so much better off gluten but have had these odd neurological and ear symptoms...working through the layers of your personal physiology is so complex. I'm relieved to know I'm not the only one who's dealt with this array of symptoms.

[basilicious]

Those sound like scary symptoms. I hope you get some answers on Monday.

I just wanted to say that the flashy vision thing reminds me of my ocular migraines. Is that the same thing as "silent" migraines? I was surprised as anyone to find out that ocular migraines are really migraines, but they don't always hurt. Mine start as a blurry spot in the center of my vision-- can't focus or read because the center is blurred out-- then it spreads in a ring formation out to the edges of my vision. The edge of the line is blurry/flashy. It makes me disoriented for hours afterward. There is more information online, with descriptions, etc. They normally don't last long (20-40 minutes, maybe?) but they leave you feeling disoriented and stressed. My GI doc said that they can be associated with celiac.

Avalon, I had not previously experienced that vision ring you mentioned, as when I wrote the original post I was having more of a vertigo issue. However, hearing about this issue was a lifesaver, because last week I had a migraine aura, which is exactly what you described and lasted about 25 minutes. It was extremely disorienting, and it would have been even worse if I had not read your comment. Thanks to your post, I was not as concerned about permanent vision loss etc, and then it gave me a thread to research once I was feeling better.

Coincidentally, that was also when I was expecting to get my final results - EEG and VNG - so I called the neurologist's office and basically demanded a phone call from the acting neuro (while my dr is on maternity leave), since that is what my doctor had promised. The good news is that the EEG and VNG were normal, so I don't have nystagmus or other inner ear issues. When I asked the dr. about the migraine aura, she tried to put me off until my appointment - in mid-April! Unbelievable. I appealed to her anti-litigation side and told her I was concerned it might happen again while I was driving and that it would cause an accident. When I asked if there was anything I could do to prevent this, she promptly told me that I could begin supplementing with 200mg of riboflavin daily.

Then, I was actually able to get in to see the acting neuro yesterday - she put me on the cancellation list, and I scored! My expectations were low since she was not communicative over the phone, but the appointment went well, and she seemed pretty knowledgeable about neurological issues from gluten. After a review of everything she said she thinks that what I'm experiencing is neuro toxicity from the gluten. She wants to determine for sure whether there's nerve damage, though, so I'll have an EMG next week. The cyst is not attached to anything, so it appears to have a slim chance of contributing to my symptoms. They'll continue to monitor it annually or if I get new symptoms. The doctor drew my thiamine, B12 and folate levels, so hopefully that will offer some baseline (though I have been supplementing 1 mcg of B12 and had just begun supplementing thiamine - hopefully it will still be somewhat accurate). Will check in again with those results, but thank you everyone for chiming in about your experiences. It is easier to weather the ups and downs knowing that this is part of the healing process, rather than worrying constantly about new, unsettling symptoms. I am getting better at avoiding cc - my husband is not gluten-free, but we have done a better job of organizing our kitchen and cooking practices - so hopefully I can just continue getting the gluten out without letting more in!

Someone had asked about the VNG test, so although that makes for a longer post, here's a quick overview:

-During the test, you wear some high-tech goggles that have a cover. Depending on the part of the test, the cover is down or up, but either way, the glasses use infrared technology to record eye movement and electrical activity.

-The test has three parts: 1) following flashing lights along a light bar 2) lying down and going through various motions (getting up, turning, etc) 3) air being pumped into your ear, first warm air and then cold air.

-The test intentionally gets you dizzy, so the whole thing is no fun, but the first two parts were relatively simple.

-The third part is extremely difficult to get through, as the air gun/blower is actually making direct, extended contact with the part of your ear that makes you feel dizzy. They put the air pump in my right ear first, let it make contact with my ear for a full minute - it feels like 5 minutes! - and then they record your eyes for an additional 2 minutes after the air pump is taken out. That is much-needed recovery time. Then it's repeated on the left ear. Then they repeat that process with cold air. Many people cannot handle the third part at all and opt not to do it. That day, the tech told me that 2 out of the 3 people who he had seen that day had opted out. It's a personal decision based on how you feel. I was able to do the warm air portion in both ears (which was necessary for that part to count), but then I opted out of doing the cold air portion. It didn't seem like they would get much more data out of it, and I had to function once I got back to work!

Hope this information is helpful for those who may have to get it. There are some scary complaints about it online, but being in the celiac crowd makes us all a bit tougher.

[pricklypear1971]

I'm glad you got in to see the neuro.

Regarding Celiac and neuro issues, as many here will tell you , they seem to be the last to go and first to come back.

For me, in the beginning, they were triggered by gluten, sugar, and processed foods like flavored/colored chips (gluten-free but contained types of MSG). I'd suggest following your doctors suggestions, as well as the posters. You'll notice there's a lot in common.

Also, you mentioned a low-grade fever. Those are common in autoimmune disease, especially multiple ai and during a "flare". I would assume your body is going through 100 changes right now, so expect the unexpected and breathe.

Most of what's happening will make sense in retrospect, but that's not very comforting in the beginning, I know.

[basilicious]

I'm glad you got in to see the neuro.

Regarding Celiac and neuro issues, as many here will tell you , they seem to be the last to go and first to come back.

For me, in the beginning, they were triggered by gluten, sugar, and processed foods like flavored/colored chips (gluten-free but contained types of MSG). I'd suggest following your doctors suggestions, as well as the posters. You'll notice there's a lot in common.

Also, you mentioned a low-grade fever. Those are common in autoimmune disease, especially multiple ai and during a "flare". I would assume your body is going through 100 changes right now, so expect the unexpected and breathe.

Most of what's happening will make sense in retrospect, but that's not very comforting in the beginning, I know.

Thanks, pricklypear. That's very interesting about the low-grade fever. My mom has Hashimoto's but when my doctor did thorough testing of my thyroid, all was quite normal. Some of the thyroid symptoms I was experiencing went away once gluten was eliminated, so perhaps I have dodged a bullet. Either way, your comment and those of the other posters are helping me shift perspectives...now that I've had the thrill of some symptoms resolving, guess I'd better buckle up since apparently I'm in for a bumpy ride!

[pricklypear1971]

Thanks, pricklypear. That's very interesting about the low-grade fever. My mom has Hashimoto's but when my doctor did thorough testing of my thyroid, all was quite normal. Some of the thyroid symptoms I was experiencing went away once gluten was eliminated, so perhaps I have dodged a bullet. Either way, your comment and those of the other posters are helping me shift perspectives...now that I've had the thrill of some symptoms resolving, guess I'd better buckle up since apparently I'm in for a bumpy ride!

Yes, lots of ai diseases overlap which makes it a pain to dx. One thing I wish I'd learned years ago when dx'ed with Hashis was to treat myself like an ai patient, not just a Hashis patient. There are differences to all ai diseases and treatments and apparently just as many commonalities. Right now I'm concentrating on the ai syndrome instead of just Celiac/Hashis/Endo (remission). I hope to avoid ai disease # 4 .