Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Curious About An Odd Symptom

Kamma

Recommended Posts

Kamma Explorer
Kamma
Posted

I'm just wondering how many people experience pain in their ears and hyperacuity to sound when they get glutened.

When I was at my worst before getting diagnosed, I would get these pinching pains in my ears and sounds were unbearable to me. I also had extreme sensitivity to vibrations. Both sound and vibrations would cause vertigo. I had all the vestibular testing done which came back normal and I was diagnosed with Tullios Syndrome which is sound induced vertigo but since I have been gluten free, the hyperacuity is gone and vibrations dont bother me as much.

Anyone else experience this?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I have had 'superman hearing' since I was a child and still do. I keep the TV on whenever I am awake and do the sleep feature at night so it turns off after I go to sleep. Otherwise I startle over every little noise. I won't keep a regular clock in my house anywhere because I can hear it even if it is downstairs and I am upstairs. That hasn't changed going gluten free.

My gluten ataxia which affected my balance and other things has resolved gluten free though.

pricklypear1971 Community Regular
pricklypear1971
Posted

I don't know if this is the same thing or not, but around dx time when I was getting shots of steroids to reduce the rash (DH) my adrenals went into overdrive...

As an example, a shower would overstimulate my senses - sound of water and sensation of water hitting my skin was too much.

After going gluten-free, the overstimulation would occur if I got glutened or my rash broke out.

So, gluten affects my adrenals (as well as steroids, which is why they are a big no-no for me).

Kamma Explorer
Kamma
Posted
  • Author

I have had 'superman hearing' since I was a child and still do. I keep the TV on whenever I am awake and do the sleep feature at night so it turns off after I go to sleep. Otherwise I startle over every little noise. I won't keep a regular clock in my house anywhere because I can hear it even if it is downstairs and I am upstairs. That hasn't changed going gluten free.

My gluten ataxia which affected my balance and other things has resolved gluten free though.

Ravenwoodglass, thanks for this. Experiences like yours and mine give new impetus to the words, "Silence is golden." Haha. When I would have to walk down the street during my worst times, I looked like a drunk reeling back and forth and the sounds of traffic rumbling and whooshing past me would give me waves of vertigo and make me cringe at the loudness of it all. I used to brace myself before going out the door and repeat the lines from the desiderata, "Go placidly amid the noise and haste and remember what peace there is in silence", over and over in my head while I was walking and tilting over. I hated sounds!

Kamma Explorer
Kamma
Posted
  • Author

I don't know if this is the same thing or not, but around dx time when I was getting shots of steroids to reduce the rash (DH) my adrenals went into overdrive...

As an example, a shower would overstimulate my senses - sound of water and sensation of water hitting my skin was too much.

After going gluten-free, the overstimulation would occur if I got glutened or my rash broke out.

So, gluten affects my adrenals (as well as steroids, which is why they are a big no-no for me).

It surely sounds similar, pricklypear. Running water and the toilet flushing would always get me as well. I'll have to look into the adrenal end of things. :)

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, adrenal healing takes a while. Don't be shocked if you take 2 steps forward, one back.

Keep it clean (food, liquids), try not to eat too much sugar. I went through a hypoglycemic phase of healing. After that, I haven't had the adrenal issues I had previously when glutened. Maybe my body was adjusting.

Kamma Explorer
Kamma
Posted
  • Author

Well, adrenal healing takes a while. Don't be shocked if you take 2 steps forward, one back.

Keep it clean (food, liquids), try not to eat too much sugar. I went through a hypoglycemic phase of healing. After that, I haven't had the adrenal issues I had previously when glutened. Maybe my body was adjusting.

Hey! You mentioning the sugar thing reminded me of something that happened this week that I'd like to as you about: I rarely eat sugar, sweets, pop or anything like that but this week I baked myself a coconut merangue rice flour square thingy and stuffed the entire thing into my mouth. :blink::( The next day I was depressed, anxious and kind of had that panicky feeling all day. I kind of made the connection a few days later that it was the sugar and made a mental note not to do that again.

Is that what you're hypoglycemia was like?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

No, mine was a shaky, bottom-out feeling immediately when my blood sugar was too high or low. Like I was crashing fast and had to get food in there.

I was hungry every 2 hours, had to eat protein and slow carbs (turkey and an apple for example). Fiber helped a lot. Cuban black beans cooked with a zillion veggies over rice was the perfect food.

For some reason I could eat ice cream. Maybe the fats with the sugar???

But that's me...it could still be adrenal, just expressed differently. Or, you could have a problem processing sugars. There are others here with sucrose/fructose issues.

ravenwoodglass Mentor
ravenwoodglass
Posted

Ravenwoodglass, thanks for this. Experiences like yours and mine give new impetus to the words, "Silence is golden." Haha. When I would have to walk down the street during my worst times, I looked like a drunk reeling back and forth and the sounds of traffic rumbling and whooshing past me would give me waves of vertigo and make me cringe at the loudness of it all. I used to brace myself before going out the door and repeat the lines from the desiderata, "Go placidly amid the noise and haste and remember what peace there is in silence", over and over in my head while I was walking and tilting over. I hated sounds!

I know what you mean about walking like your drunk. I used to compare it to walking on a ship's deck in the high seas. I got so bad I needed canes for support. For some reason I used to always feel like I was falling to the right.

The one good thing about hyper hearing is the birds in the woods. So many little voices singing pleasent tunes. I love being away from city noise and able to listen to nature and hear the rustles that tune me into a glimpse of a fox or a deer walking by. Big rustles make me walk much faster though. :o

Kamma Explorer
Kamma
Posted
  • Author

I know what you mean about walking like your drunk. I used to compare it to walking on a ship's deck in the high seas. I got so bad I needed canes for support. For some reason I used to always feel like I was falling to the right.

The one good thing about hyper hearing is the birds in the woods. So many little voices singing pleasent tunes. I love being away from city noise and able to listen to nature and hear the rustles that tune me into a glimpse of a fox or a deer walking by. Big rustles make me walk much faster though. :o

:lol::lol:

Yup, you never know what and how big the thing is that's making the big rustling noises.

...and yeah, you're right. The birds in the morning on a warm summer day are awe inspiring and peace bringing.

Funny, but I always would tilt to the right as well. Are you right handed by any chance? Wonder if that makes a difference.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,196
    • Most Online (within 30 mins)
      7,748
    Dreamstar
    Newest Member
    Dreamstar
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...