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

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
      128,387
    • Most Online (within 30 mins)
      7,748

    Tim Semas
    Newest Member
    Tim Semas
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...