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Migraines And Tinnitus With Celiac


Sher B.

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Sher B. Newbie

Does anyone have tinnitus and migraines with Celiac? My daughter was recently diagnosed and confirmed by positive biopsy and has been gluten-free since biopsy 6 weeks ago. Her gastro symptoms have subsided for the most part, but is experiencing severe migraines and constant tinnitus as well as fatigue and appears to be getting worse not better.

Her doc dismissed B12 insufficiency based on bloodtests, however her reading was at the low end of normal and with subtotal villous atrophy, I would think she is not aborbing vitamins at this time. She presents with every single symptom of lack of B-12. Doc also indicated that he has never seen tinnitus related to Celiac. I find this hard to believe, since it started along with migraines at the same time gastro symptoms began. Soooo, does anyone have tinnitus and migraines? If so any suggestions in regard to B-12 or any imput if those symtoms went away after being gluten-free for period of time? Thanks


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lizard00 Enthusiast

I've not had tinnitus, and my headaches did resolve with the gluten-free diet, but what I do know is this:

You cannot overdose b12, so you could always try and see if it works. Get a sublingual b12, as it is absorbed directly. At one point I was taking 3 sublinguals a day, which I want to say was 3mg, but I'm not sure on that.

Magnesium deficiency can also be associated with headaches. This is something else you can't overdose on, BUT, if you take too much, it will give you diarrhea. So, I would go with the recommended dosage on the label, and go from there.

I hope that your little girl gets better soon. You might also check into vitamin D deficiency, as it can be behind a long list of ailments. It is pretty common for celiacs to be deficient in Vitamin D, as vit d is absorbed in the small intestine.

Celiac symptoms are not limited to the small intestine, they can manifest in every body system.

lbd Rookie

My main symptom of gluten poisoning is a migraine. I had them for all of my life until I found out that gluten and casein were the causes. So, yes, migraines can definitely be caused by gluten intake.

Laurie

ang1e0251 Contributor

Remember that those tests only show the average for the whole population and each person's body is different. Low on the scale may be normal ( no symptoms) for the guy next to you but for your daughter, low might mean she is symptomatic. Some dr's won't use common sense to go with test results and read a patient's symptoms as in indicator along with test results.

Like was pointed out to you, since she can't take too much B12 , it may be worth a try. I certainly have measurable relief from it. Use the sublingual, methyl type.

D can run havoc on your system too, as was pointed out. Get a copy of your DD's reports. D is something you can take too much of so you need to know where she stands.

SadiraS Newbie
Does anyone have tinnitus and migraines with Celiac? My daughter was recently diagnosed and confirmed by positive biopsy and has been gluten-free since biopsy 6 weeks ago. Her gastro symptoms have subsided for the most part, but is experiencing severe migraines and constant tinnitus as well as fatigue and appears to be getting worse not better.

Her doc dismissed B12 insufficiency based on bloodtests, however her reading was at the low end of normal and with subtotal villous atrophy, I would think she is not aborbing vitamins at this time. She presents with every single symptom of lack of B-12. Doc also indicated that he has never seen tinnitus related to Celiac. I find this hard to believe, since it started along with migraines at the same time gastro symptoms began. Soooo, does anyone have tinnitus and migraines? If so any suggestions in regard to B-12 or any imput if those symtoms went away after being gluten-free for period of time? Thanks

Hi, I'm new to the board but I saw you post and really wanted to reply. I'm not diagnosed with celiac but I've been playing around with my diet for awhile trying to figure out if I have a food intolerance and I think wheat is definitely it. Migraines and tinnitus are two of my symptoms that I'm currently linking to wheat. More the tinnitus than the migraines, but thats only because I now take migraine preventative medication and I think it has helped a lot. but the tinnitus is horrible. I hear it when its quiet. Usually its ringing, but sometimes it sounds like a swoosh sound in time with my heart beat. I was gluten free for a couple of weeks and it was starting to get more quiet... well, yesterday I had chinese food not even thinking about soy sauce containing gluten and I have noticed that last night and today the tinnitus is really loud again. So, yeah, i think that it is definitely related.

mushroom Proficient

No migraines fir ne, not the nervous-symptom type of celiac. However, and strangely enough, developed tinnitus, in the right ear only, almost immediately after going gluten free, and continues to this day, 18 months later. It stops now and again, but not for long. My B12 and folate were both at the low end of normal, and when retested 9 mos. later B12 was even lower and folate was below normal. I have read (or heard somewhere) that the B12 that shows up in the tests (sorry, cannot provide reference) is a higher reading than what is actually available to your body, so if you are low normal you should be supplementing. I was also low on D.

ravenwoodglass Mentor
My B12 and folate were both at the low end of normal, and when retested 9 mos. later B12 was even lower and folate was below normal. I have read (or heard somewhere) that the B12 that shows up in the tests (sorry, cannot provide reference) is a higher reading than what is actually available to your body, so if you are low normal you should be supplementing. I was also low on D.

I have seen the same thing as far as the readings go. The blood test is measuring your stores not how well your body is able to utilize B12. It can be awhile after your body stops being able to process B12 before it will show up on blood work as other than a decrease in levels but still in normal ranges. Taking a supplement with folate can also effect the B12 blood tests giving a seemingly higher number than it really is. B12 has no toxic levels so supplementing it is not something that is dangerous and it can help a great deal.


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SGWhiskers Collaborator

My symptoms are primarily neuro. I was diagnosed through positive blood tests and biopsy. Migraines, tinnitus, nystagmus, nausea, photophobia, tactile sensitivity, confusion, ataxia, fatigue and PAIN. All have subsided with the gluten free diet, but have not been completely eliminated. I'm 6 months gluten-free. When I even smell gluten, several symptoms come back temporarily. I learned much about tinnitus when I was in graduate school for my profession, and never learned that celiac could cause it. I also know from personal experience that celiac caused my tinnitus. 100% sure of it.

So, while I would continue to let the doctor explore the possibility of another cause for tinnitus, keep in mind that even the experts are still learning the extent of the ways gluten can damage the body.

Also, NSAIDS are known to cause tinnitus. If she is taking any, that may be the culprit. I always get tinnitus when I take NSAIDS gluten or not.

pele Rookie

I just did a "dairy challange" after about 10 months completely dairy free. I ate a little homemade raw milk yogurt for 5 days in a row. My tinnitus got much worse, along with postnasal drip, brain fog and fatigue. So much for dairy!

  • 3 weeks later...
YoloGx Rookie

Anybody figured out some remedies that help get rid of tinnitus?

Just read that ashwaganda, zinc and ginkgo are good plus B vitamins (B1, B12, B6), vitamin E, Co-Q10 are helpful... Anyone here tried some of these?

For me by avoiding certain allergens my ear ringing stopped. However my friend who also has celiac seems to suffer from it continuously...

Bea

  • 2 years later...
Phantom Newbie

I have also had migraines and tinitis. I have had tinitis for some time and have always assumed that it was created by Rock and Roll <grin>. I have recently determined that I am gluten intolerant and my tinitis has gotten much worse and migraines (new to me) have been horrible. My tinitis used to be just when it was quiet, now its 24/7 and makes it difficult to here people in normal social situations.

cahill Collaborator

Does anyone have tinnitus and migraines with Celiac? My daughter was recently diagnosed and confirmed by positive biopsy and has been gluten-free since biopsy 6 weeks ago. Her gastro symptoms have subsided for the most part, but is experiencing severe migraines and constant tinnitus as well as fatigue and appears to be getting worse not better.

Her doc dismissed B12 insufficiency based on bloodtests, however her reading was at the low end of normal and with subtotal villous atrophy, I would think she is not aborbing vitamins at this time. She presents with every single symptom of lack of B-12. Doc also indicated that he has never seen tinnitus related to Celiac. I find this hard to believe, since it started along with migraines at the same time gastro symptoms began. Soooo, does anyone have tinnitus and migraines? If so any suggestions in regard to B-12 or any imput if those symtoms went away after being gluten-free for period of time? Thanks

My migraines were triggered by nightshades

My tinnitus is the VERY first sign that I have ingested soy. Even the smallest amount of cross contamination will cause ringing in my ears .

frieze Community Regular

No migraines fir ne, not the nervous-symptom type of celiac. However, and strangely enough, developed tinnitus, in the right ear only, almost immediately after going gluten free, and continues to this day, 18 months later. It stops now and again, but not for long. My B12 and folate were both at the low end of normal, and when retested 9 mos. later B12 was even lower and folate was below normal. I have read (or heard somewhere) that the B12 that shows up in the tests (sorry, cannot provide reference) is a higher reading than what is actually available to your body, so if you are low normal you should be supplementing. I was also low on D.

I have read that some of what is being measured is Vit B12 analog, not active B12.

if OPs daughter's reading is less than 500 supplementation should begin.

Ginger7 Rookie

Guidelines in Europe treat B12 deficiency if less than 500. US guidelines generally do not treat until levels fall below 200 unless you have a good dr who reads and understands this. As someone else said, it is a measure of storage which takes years to deplete so if one is already on low "normal" end, it could be that the stores are declining. I agree, if below 500, consider supplementation. Mine was and I'm currently getting weekly B12 shots.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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