Jump to content
  • 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

I Need Some Help With This One Y'all


conniebky

Recommended Posts

conniebky Collaborator

Since I've been gluten-free, except for my two slip ups, I've been feeling so much better. I've felt like going out, etc.

This morning I went to the Peddlers Mall, saw some people I know (impossible not to in a small town), I LOVE going to vintage shops, Goodwill, thrift stores...anyway, after two aisles, I broke out into a sweat, panicked, sweating like my entire shirt was soaked, I mean THAT bad.

I had three of my Grandbabies with me and they were being Angels. I felt like everyone in there was going to start screaming at me....or the roof was going to fall in. We hightailed it home, I took a valium, after about two hours, I decided to go to the grocery to get all the stuff I'm going to cook this weekend for next week.

I flipped out in there, too! I was going to take a picture cuz my 7 year old, she got one of those little carts and in it was tomatoes, a pineapple, a salad, strawberries, cucumbers...that was her treats that she picked out. Seriously. No chips, no cookies, that's what she likes. And, yes, I have taught all of them that and yes I am proud about that.

Then I felt like the floor was, like, moving up towards me. My Grandbaby asked me a question and I said the "F" word to her :o Then I said honey, we got to get out of her, Nonnie don't feel so good. Well we went through that stupid u scan thing and it kept getting stuck and I kept getting more freaked out and then I yelled at the person who was supposed to be watching the u scan, but she was texting and I wanted to get out of there, so ....then it stopped again cuz my Grandbaby took a bag off the scale thing and put in the cart, so the girl came over and tried to explain to me about that, I said, "she's is TRYING to help me, please woman, Shut the F up".

She looked at me trying to decide about that and I said, "please, I have to get out of here" so then we looked at each other and she goes, "you are really really red in the face"

Know what? We put the groceries in the car, got the air going, and I was fine, right back to myself.

What's your alls opinion of this? My daughter says cuz I've been sick and haven't gone out by myself anywhere since February and I'm not used to it. This was not a gluten thing, this was a total freak out for no apparent reason. I wasn't dizzy, my heart wasn't beating fast, I was only sweating really bad and had like this animal instinct to get OUT ........

what do you all think?


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



Celiac.com Sponsor (A8-M):



looking4help Apprentice

I don't have an explanation for you but I can say that I totally GET what you are saying happened. This has happened to me a bit as well.

It's like the world is spinning, the heater is turned on full blast and someone is pouring the sweat all over me b/c I have never sweated like that b4 in my life! I can't breathe, my head pounds, my ears feel like they are going to explode off my head and then things really go black and narrow.

I too have to either get right in front of the A/C in my car or one day I just stripped off my shorts and literally fell in the pool b/c that was where I was standing. Thank goodness we have a privacy fence.

I know what you are feeling. I have been taking things really, really a lot slower. My body has been so sick for so long it's like I just can't do it. I keep being told I need to give it time.

I just want you to know you aren't alone. I hope someone has some suggestions for us. ((((hugs))) for you!

kareng Grand Master

I agree with Sis. You were panicking. Tomorrow, go to a grocery without the kids. Go up and down 4 aisles and buy 2-4 items. Even if you don't need anything, get a bag of frozen green beans and a container of salt or sugar. You can do that, right? You've done that a thousand times.

Here's what I was told to do when you are skiing and you get scared. Sing a silly song. In the store, maybe don't sing out loud. Pick something silly, the theme to Sesame Street, one of those country songs you like about getting revenge on a cheating spouse, ....and sing it in your head.

The other trick is to just get out of the car and rush right in. Hurry up and down your 4 aisles and grab your marshmallows and bag of carrots. Stuff you don't have to stop and read the ingredients. Don't give yourself time to panic.

Also, some of us around here wear light sun glasses in the grocery. The fluorescent lights can trigger migraines and bother a lot of women. Anyone comments, which is unlikely, just say allergies are making your eyes extra sensitive.

You can do this but the key is to get back on that horse soon, soon, soon! I have set the goal this time, you can add to it or keep it the same for a few tries.

Good luck! You can do it!

kimann79 Apprentice

I have OCD and have suffered from panic and anxiety attacks. That's what it sounds like to me.

I agree with the previous poster. Sensitize yourself to going to the grocery store and buying a couple things. Keep doing that until you are able to do a whole trip and than bring a grandchild along. I've learned with my anxiety that you have to keep exposing yourself to those triggers. Little bit by little bit until you are able to handle it without having a panic attack.

conniebky Collaborator

Wow that is bizzare! I thought at one point that I'd feel better if I could put on my sunglasses. There's a Wally World (wal mart) by us that I went in three years ago at Christmas and I've never been back.

It's big, warehouse, all high lighting, I can't take that place. If someone asks me why I have on sunglasses I'll tell them cuz I have pink eye - wanna see it? LOL! There was an old movie called Oh, God with John Denver and oh, who was that old man - George Burns, he played God. So, he appears to John Denver and JOhn Denver's too scared to talk to him, so "God" tells him, just do something normal, it'll take your mind off how big this is. So John Denver starts shaving and it helps.

I was trying to think about that when I started freaking, but that didn't work, so I'll just sing, "you ain't woman enough to take my man"....great advise and I will use it.

YEsterday I went to the Liquor Barn to get my gluten-free beer - Oh, and they had one that was FOURTEEN DOLLARS for six and it said, "guaranteed no more than 6 gluten PPM." the heck with YOU! That means it's gluten! Stupid! Anyway, they were giving out cheese and cracker samples and they would NOT leave me alone about having a sample. I go "I have allergies" he goes, "not to this you wont! It's great!" Seriously? :blink:

Anyway, I will do this tomorrow, good idea about buying things I don't have to read. Like, at the Peddlers Mall, that's ALL browsing, and I want to get back to where I can enjoy it.

K8ling Enthusiast

I have felt like this before too, it was hard for me to go out once I had my baby because I was so afraid something would happen to me and then what would happen to my baby?? I had panic attacks until I was diagnosed. Now I have a medic alert which I can take off and toss at people, and I can usually tell if I am having a bad stomach day in which case I just don't go out. It's gotten tons better. It took time for me to be ok going places with my little boy, but I ma much better now.

The sensitizing is a GREAT idea, I used to panic just going in for a few things and now I can go on a whole grocery shopping trip with my toddler, no problem, I do it 2x a month lol. It'll get better, it'll just take time.

ravenwoodglass Mentor

As someone who has been fighting serious agoraphobis now for a year and a half I have to agree with the little baby steps at first. That's how I have come along the best. Another thing you may want to consider is asking your doctor if it is okay to take a half a valium before you do something that has brought these attacks on. That's called propholactic (sp) use and is how I have been able to go back to college and now most days I can either go without it or only take a quarter tab before I leave for class.

I take alprazolam and when I first started this fight back into the world my doctor told me to take half a one with me (in the script bottle of course) and when the attack would start to put it under my tongue. It would then go very quickly into the bloodstream and directly to the brain. Please ask your doctor if the valium would work the same way before you try it and be aware it will taste awful.

Also have you made sure the valium your taking is gluten free? Here one dentist kept giving me the generic form, or tryed to anyway, and it wasn't gluten-free. Only the name brand was but it was very expensive. That's why my shrink uses the alprazolam for me, in that case the name brand, Xanax is not gluten free but the generic is. If you have gluten issues the Valium may help with the symptoms when you take it but if it is a form that is not gluten free it will keep the process going.


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Connie, luv, I think you're getting really bad hot flashes. You can get soaked with sweat, red in the face, anxious, dizzy, uneasy. If you were out in the heat, this might have triggered a couple. That's why you felt better back in the car with the A/C blasting.

kwylee Apprentice

Perhaps it is a hot flash, but I've run hot all my life. Always hotter than everybody else; so much so that for years I feared going through menopause figuring I'd probably spontaneously combust!!!! - but that came and went and I have yet to have a true hot flash as described by all of my contemporary friends.

Here's the weird thing about grocery stores, big box or high ceiling stores. Since I started symptoms of vertigo and dizziness years back, I feel strange in those places. I'll get up in the morning, feel fine, then walk into the grocery and somewhere along the way, will begin feeling "something isn't right". Sometimes I've been pretty dizzy during those times, like when I was going through gluten/casein withdrawal, but now that's 97% passed, I still detect it, some times worse than others. And some stores are consistently worse than others.

And I'm not alone. My sister in law is not gluten sensitive that I know of but swears that she gets dizzy in our Wal Mart "by the time she gets to the pork and beans", so for her, it's the same place in the store. My husband reports feeling crappy and bizarre in those places as well.

I agree those places are setting off some type of panic/anxiety response, but could it be more than gluten particles? Florescent(sp?) lighting? Subliminal suggestions coming over a loud speaker? High electro-magnetic fields? Weird frequency? I don't mean to sound like a nut case, but I was in a Wal Mart a couple years ago and witnessed a glass tumbler explode on the shelf before me, all by itself. I ran and got an employee and explained that I hadn't touched it, and she told me that she knew because she had seen it happen or heard others speak of it on numerous occasions. The shelf was sitting right next to one of those large columns and I wondered if massive electrical conduit was run through those pilasters, but my husband suspected it had more to do with unheard sound frequency.

Gluten (and for me, casein) affects my nervous system. It seems logical to think that my system would be really sensitive inside AND out.

gabby Enthusiast

I have sort of similar problems with big stores that have lights waaaaay up high.....and don't have lots of natural light. Never really figured it out, but I read somewhere that fluorescent lighting coupled with bad air circulation can affect sensitive people in all sorts of weird ways. One thing that was recommended was to wear brown tinted sunglasses indoors. The brown tint is supposed to block a certain part of the light spectrum (I think it is the blue spectrum) which helps to filter out the crazy flicker from various types of lighting. I tried it myself and it helps a lot. My problem is that I feel incredibly tired and lose all my energy. When I wear my brown tinted sunglasses, I don't feel tired.

Another thing that makes me feel awful and makes me have to leave a place immediately are these triggers: oranges, fertilizers in plastic bags at garden centers, any kind of weed killer or bug killer in the gardening section of the store, the perfume department, and anywhere where they are cutting up cardboard boxes.

Hope you get to the bottom of your triggers.

BethM55 Enthusiast

I have sort of similar problems with big stores that have lights waaaaay up high.....and don't have lots of natural light. Never really figured it out, but I read somewhere that fluorescent lighting coupled with bad air circulation can affect sensitive people in all sorts of weird ways. One thing that was recommended was to wear brown tinted sunglasses indoors. The brown tint is supposed to block a certain part of the light spectrum (I think it is the blue spectrum) which helps to filter out the crazy flicker from various types of lighting. I tried it myself and it helps a lot. My problem is that I feel incredibly tired and lose all my energy. When I wear my brown tinted sunglasses, I don't feel tired.

Another thing that makes me feel awful and makes me have to leave a place immediately are these triggers: oranges, fertilizers in plastic bags at garden centers, any kind of weed killer or bug killer in the gardening section of the store, the perfume department, and anywhere where they are cutting up cardboard boxes.

Hope you get to the bottom of your triggers.

Interesting! Maybe that's why I've always preferred amber lenses in my sunglasses. I, too, feel odd, stressed, sometimes dizzy, in big stores with fluorescent lighting and lots of noise. I'll try wearing my sunglasses in those sorts of stores, see if it helps. I have reading lenses in my sunglasses, so that's my excuse, if anyone asks! B)

mushroom Proficient

I have reading lenses in my sunglasses, so that's my excuse, if anyone asks! B)

Me too. I quite often wear sunglasses in there (unless I have to actually read something, in which case it's usually to dark to see with them :rolleyes: ) But I usually wear them in those huge malls where there are three floors and you look down from the top and see all the lines of people walking around like ants in a trail, and I get the heebies. Only good for about an hour in one of those places :huh:. But in the supermarket, it must be looking at all that gluten because I nearly always get diarrhea, the only time I do nowadays :lol:

sandsurfgirl Collaborator

I had horrible gluten induced panic attacks. When I went gluten free they nearly went away, but not completely.

I get dizzy, short of breath, my throat is tight, feel like I can't swallow, feel like the room is spinning and I might pass out.

My first grocery store trip after diagnosis I had a major anxiety attack and I left my entire cart of groceries in the aisle and ran out to my car crying hysterically. I barely made it the few blocks home because I thought I would pass out and have an accident. I cried like a crazy woman for about half an hour.

It didn't take long to get used to the lifestyle and shopping is fine now.

One thing that helps is to focus on blowing OUT not sucking air in. You feel like you are short of breath but in reality you are over breathing or hyperventilating. Take a small breath in and then slowly blow it all out until you have no air left in your lungs. Squeeze your stomach in so you force all the air out. After a few of these breaths the tightness in your chest will open up and you'll feel better.

Also recognizing that it's a panic attack and doing self talk in your head helps a lot.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.