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

Weird Symptoms


beelzebubble

Recommended Posts

beelzebubble Contributor

okay...so, i'm having some sort of episodes of something. i have no idea what, and i wanted to run it by you before i freak out and run off to the doctor (which i will probably do anyway, but you are always my first source of info).

okay, so, here are the weird symptoms...it usually starts when i can't sleep one night because my heart is pounding and i am so anxious that i can't function. it will take me hours to finally fall asleep. the next day, i keep feeling like i have to burp but i can't...the pressure builds up, until it's really uncomfortable. then i can start making myself burp, but it takes a lot of work. the trouble sleeping continues for a couple of nights, as the burping makes the tightness in my chest go away. i feel sort of spacey, tired, nauseous, and generally yucky. the last, and weirdest symptom (the one that makes me realize there is something autoimmune going on), is that the second day, i start to feel feverish, mostly around my face, but also everywhere else. the next morning, i will wake up and my cheeks and forehead will be BRIGHT pink and my face will be itchy. after a few hours, i will develop what look like blisters all over the red area. these blisters are almost like teeny pimples, but they are more oozy. these will pop sometime the next day, and then the skin on my face will get really dry and start to flake off. by this time, the other symptoms are starting to subside, but i still don't feel quite well. it takes about a week for these symptoms to go away completely.

phew. anyway, i am totally at a loss, and i know that if i go to the doctor he will think i am crazy. but, it's so uncomfortable, especially the anxiety and rash. this has happened, i think, 4 times this year and never before. if anyone has any thoughts, please, please, please share them with me.


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



Celiac.com Sponsor (A8-M):



judy05 Apprentice

okay...so, i'm having some sort of episodes of something. i have no idea what, and i wanted to run it by you before i freak out and run off to the doctor (which i will probably do anyway, but you are always my first source of info).

okay, so, here are the weird symptoms...it usually starts when i can't sleep one night because my heart is pounding and i am so anxious that i can't function. it will take me hours to finally fall asleep. the next day, i keep feeling like i have to burp but i can't...the pressure builds up, until it's really uncomfortable. then i can start making myself burp, but it takes a lot of work. the trouble sleeping continues for a couple of nights, as the burping makes the tightness in my chest go away. i feel sort of spacey, tired, nauseous, and generally yucky. the last, and weirdest symptom (the one that makes me realize there is something autoimmune going on), is that the second day, i start to feel feverish, mostly around my face, but also everywhere else. the next morning, i will wake up and my cheeks and forehead will be BRIGHT pink and my face will be itchy. after a few hours, i will develop what look like blisters all over the red area. these blisters are almost like teeny pimples, but they are more oozy. these will pop sometime the next day, and then the skin on my face will get really dry and start to flake off. by this time, the other symptoms are starting to subside, but i still don't feel quite well. it takes about a week for these symptoms to go away completely.

phew. anyway, i am totally at a loss, and i know that if i go to the doctor he will think i am crazy. but, it's so uncomfortable, especially the anxiety and rash. this has happened, i think, 4 times this year and never before. if anyone has any thoughts, please, please, please share them with me.

<{POST_SNAPBACK}>

[/quote

OK, I have had similar experiences, not quite the same but thought I would talk about it. About 5 years ago I developed a rapid heartbeat and my neck and face would get very red. Of course they couldn't find anything wrong so attributed it to anxiety. After that they found a goiter on my neck and I saw a thyroid specialist and he discovered a growing nodule on my thyroid, which was removed along with half of my thyroid gland. Surgeon said the gland was destroying itself. The nodule was benign. Since then the redness has gone away and my heartbeat is back to normal. I also had an Endoscopy and they discovered Barrett's Ring around the esophagus caused by acid reflux, which could also cause some of your problems. I know for a fact that Acid Reflux can cause a lot of anxiety. I still have the Insomnia but I take medication for that. I understand how uncomfortable you are, I urge you to get your thyroid checked, also an Endoscopy if you haven't had one,

and be tested for celiac disease if you haven't been already. Also you didn't say if you are gluten-free and/or CF. Dairy seemed to cause a lot of digestive and neurological problems that didn't go away until I stopped it. Remember these are autoimmune diseases and you have to take one thing at a time, but you will feel better soon. I hope you have a good physician who will work with you.

beelzebubble Contributor

i just thought i would post this, as i'm feeling pretty good for the first time in a while. i took a b vitamin complex yesterday morning. i used to take these all the time, but i've been pretty bad about it for the last year. well, within half an hour of taking them, a lot of the symptoms that i'd come to associate with my episodes were just gone. how weird is that? they did come back later in the day, but the next morning it was the same thing again. i took a vitamin and half an hour later the shakiness, feeling of tension in my chest, and loud heartbeat were gone and stayed gone for most of the day. do you think this is odd? i do. i could just be jumping to conclusions, but i thought i would get some input. what do you think? could a deficiency cause these symptoms? and if so, would one pill make such a drastic difference, or am i just insane?

oh, and i am gluten-free. not cf. i'm on meds for my thyroid, have been for 13 years, since i was in my late teens. i thought about that, and will have it tested at my next appt.

  • 1 month later...
beelzebubble Contributor

hi all,

an update. i went to the doctor and he ran some blood tests-cbc, b12, thyroglobulin ab, free thyroxine, t3 uptake, thyroid peroxidase, and tsh measure.

most of the tests came back normal, some were off. my white blood cell count was fairly elevated at 12,000 (normal 3 to 11,000). my thyroid results were within normal range, BUT my thyroglobulin ab was 121 (normal below 41). and my thyroid peroxidase was 458 (normal is less than 35). the doctor is baffled, so he is sending me to an endocrinologist. i have a while to wait though.

i'm curious if anyone else has ever experienced symptoms akin to hyperthyroidism, with normal blood tests for thyroid hormones, but at the same time producing a massive amount of anti-thyroid antibodies, which would suggest hypothyroidism? it's so odd, and i just want some answers, damn it :). i am on thyroid meds, and have been for 13 years (i'm 32). i'm just confused and a little frightened. these symptoms are really scary. any input would be greatly appreciated. any at all.

bubble

elisabet Contributor

what about your b12?

Guest nini

I've had some similar symptoms... I started taking an isotonic B vitamin every morning and haven't had it since. It is very scary and I can't sleep when it's going on... usually lasts for a few days. Most likely when I have been accidentally glutened. I haven't been able to tie it into anything else, but the B vitamins certainly seem to help.

beelzebubble Contributor
what about your b12?

it was within normal range. of course, with the amount i've been taking it should be sky high. i'm going to ask the endo to test for the intrinsic factor.


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



Celiac.com Sponsor (A8-M):



elisabet Contributor
it was within normal range. of course, with the amount i've been taking it should be sky high. i'm going to ask the endo to test for the intrinsic factor.

Do you remember the exact number?

beelzebubble Contributor

816-you couldn't be more normal. i do think it's odd though, that after taking b vitamins daily for months, and a sublingual daily for over a month (with the b-complex), that my b-12 wasn't much higher. i mean, i'm taking 10,000 % of the us rdi. ah well, like i said, i'm going to have the endocrinologist test my intrinsic factor.

alas, i was hoping that this would turn out to be something simple, and non-scary. maybe he's right, and it is just anxiety. that would be wonderful. a bit embarrassing, but wonderful nonetheless.

RiceGuy Collaborator
816-you couldn't be more normal. i do think it's odd though, that after taking b vitamins daily for months, and a sublingual daily for over a month (with the b-complex), that my b-12 wasn't much higher. i mean, i'm taking 10,000 % of the us rdi. ah well, like i said, i'm going to have the endocrinologist test my intrinsic factor.

alas, i was hoping that this would turn out to be something simple, and non-scary. maybe he's right, and it is just anxiety. that would be wonderful. a bit embarrassing, but wonderful nonetheless.

Just a guess:

Seems to me that if you have intestinal damage, then you'd have some degree of malabsorption. So you would't necessarily get all the nutrients you are putting into your body, including those from suppliments. That would explain why you need them in the first place, and why the levels aren't showing up so high.

  • 1 month later...
beelzebubble Contributor

hi guys,

here's a quick update. after some tests, the endo determined that i was (get this) both hypo and hyperthyroid. it seems that my dose was too small, and that was causing my body to pump out thyroid stimulating hormone. because of this, the small part of my thyroid that actually works was releasing way too much t3. the result is that i was hypothyroid with hyperthyroid symptoms. that's why i wasn't getting the usual symptoms of hypothyroidism, it was being masked by the t3.

well, hopefully that will explain the heart stuff. it doesn't explain all of the symptoms, but at least the really scary ones (cross fingers). i thought i should post this, in case anyone else has a similar problem.

i just went up to a higher dose a couple of days ago. i'll keep you posted.

Canadian Karen Community Regular

I am looking in my thryoid book now and here are a few websites that might be of some use to you:

American Thyroid Association Inc.

www.thyroid.org

The Endocrine Society

www.endo-society.org

Endocrinologist-operated website

(Dr. Daniel Drucker, thyroid specialist at the Toronto Hospital (University of Toronto)

www.mythyroid.com

Karen

jknnej Collaborator

Wow, I hope you start to feel better soon. A few of the symptoms you described with the burping sound like reflux. I have that as well and I know how that feels.

If the thyroid issues don't make it better I would see a GI Doc. I have a Schatski's Ring ( I don't know if I spelled that correctly!) around my esophagus so I have trouble swallowing as well.

I wonder what difference is between the Schatski's ring and Barrett's? Does anyone know?

BB22 Newbie

I too have weird symptoms. I have nodes growing on my thyroid & a liver covered w/ little cysts. Thyroid functions apparently ok, liver off. - what else weird? I swear I've been weird since I was born.

Nancym Enthusiast

Wow, that's weird. I have been both hyperthyroid and hypothyroid but I've never heard of anyone in your shape. Do you have Graves and Hashi's? I heard it can happen together.

beelzebubble Contributor

i know. this is weird, huh. no, i don't think i have grave's. i do have hashimoto's though. the funny thing is, i must have been hypothyroid for 3 years or longer. that's when i noticed i was losing my hair (which has started to grow back now). but i attributed that to the stomach stuff that was going on. then, when i was diagnosed, i started to feel much better after going gluten free. so i didn't give it another thought. i've had my thyroid checked at least once a year since then and they never picked it up. not until i started having heart issues.

well, i hope this turns out to be what is causing everything. i was getting a little freaked out, with the rash...i was starting to look at lupus. scary stuff.

bubble

  • 1 month later...
Nickie Newbie
i know. this is weird, huh. no, i don't think i have grave's. i do have hashimoto's though. the funny thing is, i must have been hypothyroid for 3 years or longer. that's when i noticed i was losing my hair (which has started to grow back now). but i attributed that to the stomach stuff that was going on. then, when i was diagnosed, i started to feel much better after going gluten free. so i didn't give it another thought. i've had my thyroid checked at least once a year since then and they never picked it up. not until i started having heart issues.

well, i hope this turns out to be what is causing everything. i was getting a little freaked out, with the rash...i was starting to look at lupus. scary stuff.

bubble

The rash sounds like dermatitis herptiformis which is associated with gluten intolerence. I just got diagnosed with it by my dermatologist after having breakouts for 20 years. It is like little blisters and can occur on your face, hand and other parts of your body. Don't know for sure but you may do some research on it and see if it appears to be the same thing you are experiencing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,950
    • Most Online (within 30 mins)
      7,748

    stichael
    Newest Member
    stichael
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • 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.