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

Symptoms


draeko

Recommended Posts

draeko Apprentice

Good morning everyone,

Just diagnosed a few weeks ago and I am still dealing with lots of symptoms. I have a few weird ones and was wondering if someone else experienced them.

Really warm face and some flushing

numbness in legs and arms

pressure in my head that it makes it difficult to walk

Just need some reassurance this is all do to Celiac. My doctor assures me it is. ?? Im a little concerned.

Melanie :(


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient
Good morning everyone,

Just diagnosed a few weeks ago and I am still dealing with lots of symptoms. I have a few weird ones and was wondering if someone else experienced them.

Really warm face and some flushing

numbness in legs and arms

pressure in my head that it makes it difficult to walk

Just need some reassurance this is all do to Celiac. My doctor assures me it is. ?? Im a little concerned.

Melanie :(

Hi Melanie :)

Try not to worry--I had those symptoms, too. It takes time for those sort of things to go away--probably several months.

Guest Norah022

I have been gluten free since June and am still having those symptoms so it is going to be a long haul for a while but hopefully it will get better for the both of us!

draeko Apprentice
I have been gluten free since June and am still having those symptoms so it is going to be a long haul for a while but hopefully it will get better for the both of us!

Really :o Have you seen any improvement? Please tell me yes...I've been living like this for 7 years now full of wicked symptoms but I wish they could go away overnight...sorry to vent..Im sure you feel the same way..

Thanks for you reply

Melanie

sagemoon Newbie

I have had all sorts of wierd symptoms as well, including a hot face, and just realized yesterday that a few more have gone to the wayside. I have been gluten free since January 2006, but have still been getting some hidden gluten as evidenced by a positve IgA a month ago, but it is a lot better than it was. One of my symptoms was the inability to have a proper conversation on any given day - I just could not remember the name of anything! It was so frustrating. I'd wind up pointing to the object that I could not name - say the kitchen countertop - and getting so mad at the person I was talking to because they could not get what I was trying to say. Sheesh!!! Anyway, I realized yesterday that I have been having perfectly clear conversations for a while. YeeHaa!! This healing may also have been helped by all of the logic puzzles I have been forcing myself to do daily. They really are hateful things and very difficult for me to do, I guess it is because I am an artist and don't think particularly logically, but I have improved on my success rate from 1 out of 5 right to 3 out of 5 right. (I am bored with the Sudoku and regular crosswords)

The second healing I have noticed is that I do not want to take my Ritalin anymore. I was diagnosed about 6 years ago with Adult ADD. The Ritalin really helped when I needed to pay particular attention. I had a lot of business meetings to attend and would find mindself drifting off and unable to follow the conversation. I was getting lost a lot when I was driving. I also tried to burn down the house a couple of times by boiling the pan dry. I hadn't taken it very much over the past 6 months because I have been hoping the gluten was the culprit and was holding out for my brain to settle down after going gluten free, but the thought of never getting a refill again was really scary. I realized just over the past few days that I don't care about it anymore, at all. I haven't had any since I don't know when and feel perfectly capable of handling life without it. Both of these improvements are huge events as far as I am concerned.

I still get a hot face now and then, but it is rarer and rarer. It does take a while for things to settle down after going gluten free. Hang in there and look forward to happy days when you, too, realize that something good has happened. :)

Guest Norah022
Really :o Have you seen any improvement? Please tell me yes...I've been living like this for 7 years now full of wicked symptoms but I wish they could go away overnight...sorry to vent..Im sure you feel the same way..

Thanks for you reply

Melanie

Actually it has gotten much much worse but that could just be my body so it doesn't mean it will be the case with you. Everything that is suppossed to happen when you go gluten free has not happened with me so I don't really know how to explain that.

sagemoon Newbie
Actually it has gotten much much worse but that could just be my body so it doesn't mean it will be the case with you. Everything that is suppossed to happen when you go gluten free has not happened with me so I don't really know how to explain that.

Hey Nora,

Actually, I felt a lot better after going gluten-free for the first month, but just the stomach stuff. Then I got really sick for about a month, all of my previous symptoms were back with a vengeance. I figured out that it was SIBO (Small Intestinal Bacterial Overgrowth). I think it happened because I had lost a lot of my fiber in the Gluten-free process. You can get it treated with antibitotics, but I found a diet online (sorry, can't remember where I found it, google SIBO) that worked well. Basically, it is the Atkins diet except you eat fresh fruit as well. It is meant to eliminate any refined carbs and sugars to deprive the wrong bacteria from growing in your gut and the high fat portion makes everything slip through your gut at a higher rate. I did it for 2 weeks and felt really good afterwards. It then took me about 2 months before I noticed the fatigue and arthritis symptoms to have really subsided. Just hang in there and research everything that happens to you. I wouldn't have known about the SIBO except I searched the internet with the question as to why I was still sick if I had gone gluten-free. I forget the exact search phrase I used, but it was pretty close to just WHY AM I STILL SICK?!? My gastro guy and my Family MD had no idea. You have to pursue this and not give up.

Hope this helps and that you feel better soon, :rolleyes:

Oh yeah, DEFINITELY take probiotics. They will help immensely. I can point you in the right direction on those if you need help.


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



Celiac.com Sponsor (A8-M):



Guest Norah022

Actually the stomach problems are all gone.

I am having issues with serious vertigo and lightheadedness, passed out a few times. Having serious breathing issues that no one can figure out.

I was doing really well for the first three months then went back to school and got immensely ill with the above symptoms.

Sophiekins Rookie

Hey Nora,

Try cutting corn out of your diet - it causes me to feel constantly dizzy with episodes of vertigo so severe that I have to stay completely motionless until they stop of their own accord. It also causes breathing problems (let me guess. . .your lung capacity is way down, but it isn't pneumonia, and your doc would be thinking you had asthma, except that none of the asthma drugs do anything at all and all of the tests come back negative?). I had to change jobs because of this - my workplace had a popcorn machine that was used occasionally, but which was enough to cause the breathing problems. I also have to limit the time I spend in movie theatres and malls with popcorn stands.

num1habsfan Rising Star

I still get tingles and numbness, mostly in my wrists or hands and sometimes my feet. I've been gluten-free for almost 4 years and still those show up randomly. Hopefully you wont have this issue..

~ lisa ~

Guest Norah022
Hey Nora,

Try cutting corn out of your diet - it causes me to feel constantly dizzy with episodes of vertigo so severe that I have to stay completely motionless until they stop of their own accord. It also causes breathing problems (let me guess. . .your lung capacity is way down, but it isn't pneumonia, and your doc would be thinking you had asthma, except that none of the asthma drugs do anything at all and all of the tests come back negative?). I had to change jobs because of this - my workplace had a popcorn machine that was used occasionally, but which was enough to cause the breathing problems. I also have to limit the time I spend in movie theatres and malls with popcorn stands.

Actually my lung capacity is normal.....

And the vertigo is continuous..IT never stops.

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    5. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.