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

What Is Your Most Annoying Symptom?


erin24

Recommended Posts

jerseyangel Proficient
My are absolutely the nausea and the feeling I'm going to pass out. I get so weak I bearly feel conscience at times.

Rinku--Those were my symptoms at your age. Have you been tested for anemia? Even if you have, a multivitamin with iron might be a good idea. Those only have the MDR of iron in them.


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



Celiac.com Sponsor (A8-M):



  • Replies 98
  • Created
  • Last Reply
prinsessa Contributor
I'd have to say the lack of control! When you gotta go YOU GOTTA GO! The D is intense. I sometimes feel like a stunt double, took a couple headers jumping over things to b line to the bathroom quick!. I sorta gave up on wearing things with zippers and buttons! HA

Stef 4 Dogs

I know what you mean. Luckily right now I am a stay at home mom. I have easy access to a private bathroom. And I usually don't have stomach problems in the evenings when I am at school.

Besides the ever-favorite constant nausea, dizzyness and painful 'old guy beer belly', I get super super cold for at least three days after a glutening. It's as if I have no way to retain heat (very annoying).

Btw.. It's so nice to talk to people who actually understand what I am going through. It gives me strength. Thanks.

That is so strange because I am ALWAYS cold. I am still learning what I can and cannot eat, so I don't know if the constant coldness will go away after being gluten free for a while. I am one of those strange people who loves really hot weather because I am finally warm.

beelzebubble Contributor

for me it's nausea. i just seem to get nauseous easily, glutened or not. but when i'm glutened it just doesn't go away, i think until the inflammation does. blech.

Ashley Enthusiast
Rinku--Those were my symptoms at your age. Have you been tested for anemia? Even if you have, a multivitamin with iron might be a good idea. Those only have the MDR of iron in them.

Patti- I believe so, but, I think I didn't have anemia. I do take a multivitamin everyday. I'll give it a look and see if there's a good amount of iron in there.

jerseyangel Proficient
Patti- I believe so, but, I think I didn't have anemia. I do take a multivitamin everyday. I'll give it a look and see if there's a good amount of iron in there.

Rinku--Just checking! Nausea and dizziness are the worst :angry: Anyway, hope you're feeling better soon!

slpinsd Contributor

For me the worst is the anxiety/panic/difficulty breathing/reflux/chest bubble symptoms(looks like I'm in the minority here) and 2)brain fog/fatigue. I'd also like to add: 3)the fact that I get symptoms at all when I am adhering, to the best of my knowledge, to a gluten-free diet 4) that the "glutening" seems to last for about 5-7 days 5)explaining it to people 6)weight loss.

natalunia Rookie

Diarrhea & Fatigue are my two most annoying...


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



Celiac.com Sponsor (A8-M):



Guest Robbin
For me the worst is the anxiety/panic/difficulty breathing/reflux/chest bubble symptoms(looks like I'm in the minority here) and 2)brain fog/fatigue. I'd also like to add: 3)the fact that I get symptoms at all when I am adhering, to the best of my knowledge, to a gluten-free diet 4) that the "glutening" seems to last for about 5-7 days 5)explaining it to people 6)weight loss.

Omg, I hate that. I get that too. Feels like a balloon is being inflated inside my chest cavity above the stomach and then I get the same feeling in the throat/esophagus. Yes, that definitely is one of the baddies. I get that so much worse with anything barley. I think I am allergic in other ways to barley besides the celiac thing. It is very scary when that happens. :blink:

sillyyak Enthusiast

Generalized Weakness. I am still "recovering" (whatever that means) and I still have a plethora of symptoms, including D, C, brain fog, muscle wasting, and generalized abdominal pain. No fun.

slpinsd Contributor

Someone mentioned an anti-spasmodic......can you share? What is the name of it? I want that- yeah- I feel like someone is poking my stomach from the inside- like I haven't eaten in a week......

acousticmom Explorer
. . . . I am ALWAYS cold. I am still learning what I can and cannot eat, so I don't know if the constant coldness will go away after being gluten free for a while. I am one of those strange people who loves really hot weather because I am finally warm.

Me, too. I'd be chilled for months (and not just during Michigan winters), always feeling like I'm coming down with the flu. After 2-1/2 months gluten-free and 1 year dairy-free, the chill has gone away--hope it stays gone & it's not some fluke! Hope yours goes away, too!

acousticmom Explorer
BRAIN FOG

I am not gluten free (yet) and am currently dealing with Brain Fog big time. I HATE it and it puts such a damper on my life. It is as if I am not connected to the ground and I feel like I am not really mentally here. Like I am living my life in a dream like state. I feel like I am going to tip over but I never do. It feels like I am tipping backward on a chair and almost going to tip but just never do. I've been trying to figure it out for years and recently dicovered that I have some relatives with Celiac disease. I've just started my learning about Celiac and the brain fog thing is by far my biggest problem.

I've lived with terrible brain fog for 15 years, much of it feeling downright drugged. At times, I wouldn't even drive because I didn't feel alert enough. Eliminating dairy a year ago helped a lot (severe allergy), and going gluten-free 3 months ago seems to have helped even more. (I so want it to last--I'm a little afraid to get my hopes up.) Now that I feel more clear-headed, I can't believe how horrible I felt for so long, and how much of life I've missed out on. I can honestly say I'm not even tempted by the gluteny foods I used to love, because it's so great to feel like myself again!!

I highly recommend you try going gluten-free. I've heard at least 3-6 months recommended, since it may take that long (or longer) to get the gluten out of your system. I know the change is challenging, and much moreso with brain fog, but you owe it to yourself to try it. And you have to go totally gluten-free--90% gluten-free doesn't do you any good.

Wishing you the best!

Rachel--24 Collaborator

My worst symptom by far is brainfog....I hate it . :angry:

I sometimes can barely function due to the brainfog and its the most frusterating thing I've ever experienced. Next would be mood swings and depression....I have anger "episodes" and also can get overly emotional. Those are my worst but the physical symptoms are no fun either. I get the freezing chills too...also intense pressure in my head, vision problems, fatigue, tingling/numbness/burning sensations and I get more sensitive to other foods. :(

jerseyangel Proficient
For me the worst is the anxiety/panic/difficulty breathing/reflux/chest bubble symptoms(looks like I'm in the minority here) and 2)brain fog/fatigue. I'd also like to add: 3)the fact that I get symptoms at all when I am adhering, to the best of my knowledge, to a gluten-free diet 4) that the "glutening" seems to last for about 5-7 days 5)explaining it to people 6)weight loss.

Hi--I was having the same thing--I don't know, for me, if it's Celiac related because I began to have it about 5 months into the diet. That's the confusing part :blink: . But I wanted to tell you that I have a new Allergist who diagnosed me with bronchial spasms caused by reflux. He is treating me with Prevacid and Zyrtek. I've been taking them since Monday, and the pressure is gone! I had the breathing/reflux/chest bubble that you described, and it's been going on since December. My doctor said that these things go hand in hand--the reflux usually comes first and the bronchial stuff is the result. Mine caused anxiety, especially at night--now that the pressure had let up, I am even sleeping more soundly.

Guest nini

I forgot to mention that I HATE BEING COLD ALL THE TIME... I feel like I'm FREEZING constantly! Even when it's warm out I'm cold!

Oh and when I do get accidentally glutened that feeling of having swallowed broken glass is SOOOOOOOOOO Annoying.

marciab Enthusiast

This is interesting. Ya'll have covered most of my symptoms that I thought were from CFIDS/FM. Fatigue, brain fog, joint pain, etc.

I've only been on the gluten free diet since Sept 2005, so I am still trying to figure out what gluten does to me.

I tried plain white macaroni in Jan and had "D", horrible pains, and slept for 2 days.

Last Sunday (when I was possessed), and ate Carraba's bread, I had complete and total brain fog, "C",

gas, gas, and more gas. And I am having adrenaline rushes / hyperactivity ??

Anyone get sweaty palms ? This started again 2 days ago. My doctors have always told me I was anxious/nervous around them. Idiots !!! My palms sweat profusely from time to time.

All my symptoms are annoying, but the stomach pain is by far the worse.

Thanks for all your help here on this board. Ya'll have really helped me (the unpossessed Marcia), stay on this diet.

Guest BERNESES
Someone mentioned an anti-spasmodic......can you share? What is the name of it? I want that- yeah- I feel like someone is poking my stomach from the inside- like I haven't eaten in a week......

One I've taken that worked was Bentyl (it's a prescription though).

For all those of you that mentioned being cold all the time, before I got sick I had the warmest body. Always hot, even in midwinter. Then, BOOM, I was freezing cold even in the summer. I am happy that it FINALLY subsided except when I get glutened. Then, it could be 90 degrees out and I'd feel loike I was in Antarctica.

For nausea, my primary gave me phenergan. Works great. But I got really constipated whenever I took it (for like weeks) and I found out that antihistamines are constipating so now I only take it when I'm desperate. I figure having all that junk hanging around in your system can't be worth it. She suggested I go to a natural pharmacy and I got something by a company called Boiron for nausea/vomiting. It works almost as well as the phenergan without the drowsiness/constipation. I think it's called Ipechuana. You put 5 pellets under your tongue and it seems to settle my stomach when I need it.

mick66 Newbie

Hi everyone,

I would say that stabbing pain and brain fog are the worst most of the time. Although, when I was reading this yesterday, and I was about to post, the nausea kicked in hard. It lasted for hours, longer than usual. I don't recall getting glutened, but I suppose since this is not a perfect world and I am certainly not that it is possible. <_< fatigue , due to Sleepless nights? is another big one, is that related to celiac disease, does anyone else have trouble sleeping, falling and staying asleep? I rest better in the afternoon with a nap. Anyone else? I went to bed at 12 last night and was wide awake at 3:30, so I stayed up and read then watched the early news with a cup of tea, decaf.

Thanks for your support, Mick66

happygirl Collaborator

aw, my heart can sympathize with all of you! it is a hard question to answer as I get the whole range of symptoms...from brain fog to severe arthritic type pain to fatigue. In terms of just the flat out worst...it definitely has to be the "D." Ate at Outback this past week with friends of my parents that I haven't seen in a few years....ended up in the Outback bathroom. Yeah. Good times. So embarrassing but luckily they understood. Sigh.

Rachel--24 Collaborator
For all those of you that mentioned being cold all the time, before I got sick I had the warmest body. Always hot, even in midwinter. Then, BOOM, I was freezing cold even in the summer. I am happy that it FINALLY subsided except when I get glutened. Then, it could be 90 degrees out and I'd feel loike I was in Antarctica.

Yeah me too...I had a very warm body before I got sick. I remember feeling something wasnt right when I was all bundled up at work....I closed my office door and blasted the heater and when anyone tried to come into the room they'd be like "WOAH...its way too hot in here...how can you stand that?" They wouldnt be able to be in my office at all....and I was still cold. That was when everything started for me. My thyroid was hyper from Graves at the time which would normally make me hot and sweaty but instead the opposite was happening. I was cold and gaining weight. My thyroid was blamed for everything and it got nuked...but of course I didnt get better. My poor thyroid....it was an innocent bystander. :(

jerseyangel Proficient

I think my feeling of hot/cold have leveled off some since gluten-free. This past winter is the first one in memory that I didn't wear socks to bed. My feet used to be freezing. It will be interesting how the summer goes.

danikali Enthusiast

Wow! You all have some level of all of the symptoms I have. Well, I'd say my MOST annoying symptom is horrible BLOATING. I forgot who mentioned this, but I'm exactly the same...I'm 5'7 and fluctuate between 115-121lbs. When it's a good day, and I am not bloated, I am 115, and those days that I look like I'm about to pop a baby out of me, I'm 121 and don't seem to get any lower. And it's not like I change the amount of food I have or anything. ON the good days, I could eat like a total pig for like days straight and my stomach is still flat and I'm don't gain any water weight. It's horrible because I have to wear bigger clothes to work when I'm bloated, even though the butt and legs are saggy. It's sucks to have to dress up for work when your stomach is as round and hard as a globe or something! It would be one thing if I was pregnant, but I'm not!

Oh, and yes, after I get glutened, it's annoying the day after when I have HOOOOOOOOOOOOOOOOOORRRRRRRRRIBLLLLLLY EMBARASSING GAS (SO BAD!) and I feel like I have mono again because I can barley walk I'm so tired! Oh, not to mention the back burn, bad stabbing heart burn and stomach cramps. I really hope this all goes away some day!

slpinsd Contributor

jersey angel-

i just saw an allergist, too, and i was just diagnosed with bronchial spasms due to reflux, as well as asthma. it's definitely the gluten that causes the severe (not helped by meds) reflux which triggers these bronchial spasms.

jerseyangel Proficient

Wow--thanks. The Prevacid does seem to help me, though. I can't believe we got the exact same diagnosis--I was beginning to think I was weird or something because my GI told me it was gas, and to take an over the counter gas med. He seemed uninterested in the whole thing :angry: . How do you handle it?

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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

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

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.