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


Lauriann

Recommended Posts

Lauriann Rookie

Hello,

I am relatively new to this site. I dont often reply to anything, I just read and get information. I was diagnosed with Celiac in July of 08.

I have noticed in this forum that people sometimes try and out do each other with symptoms. I found that very odd. And also I find that alot of people on this site self diagnose themselves with the disease. I look at it the more we dwell on being sick it just makes us sicker. People are very gloom we still have our lives in tact we just have to live them a little differently than others thats all.

thats really all I wanted to say... :)


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

This forum is filled with all sorts of people. People like you who just "lurk". People who come in here only when they feel like crap to vent. People who are new to the disease and need valid help. People who find Celiac/Gluten intolerance interesting even though they dont have it. And people who are doing well, but come in here just to help others and offer support.

It is a living breathing organism like anything else. You will not appreciate everything about it. But you do not need to. You can still benefit from it even though you do not like how each member behaves.

We are all lucky a forum like this exists. :)

Lauriann Rookie
This forum is filled with all sorts of people. People like you who just "lurk". People who come in here only when they feel like crap to vent. People who are new to the disease and need valid help. People who find Celiac/Gluten intolerance interesting even though they dont have it. And people who are doing well, but come in here just to help others and offer support.

It is a living breathing organism like anything else. You will not appreciate everything about it. But you do not need to. You can still benefit from it even though you do not like how each member behaves.

We are all lucky a forum like this exists. :)

I dont consider my self a " lurker" so I take a little offense to that statement. Thats fine with people if they want advise...obviously that is why I am here. But I still believe that alot of people really do try and out do each other with their symptoms. That is my opinion thats all. I have no problem ginving out information as I have done in the past. So dont need to be so angry with my point. Thats what this forum is for as you have stated for venting...

Lisa Mentor

Hi Laurianne,

My name is Lisa and I've been active on this site for over three years. You will find a wide variety of people here. But, there is one thing we all have in common. For the most part, many of us have been very, very ill and in searching for a path to good health, we landed here.

Celiac Disease has over 200 symtoms and the group of us vary in all manners. We gather here because we all have Celiac Disease, gluten intolernace or gluten sensitivities, or associated illnesses caused by it. Some people come here because this is the only place that they could be understood. Some people come to this place for the best information around and others find a hand to hold in a terrible time of their lives. Others are healed and stay to "pay it forward" so to speak.

So, there are many reasons that people find themselves here. I hope you have reason enough to stay. We learn from everyone here. And everyone is welcome! ;)

melmak5 Contributor

I can see your point, that sometimes it can appear that people are trying to one-up each other when they are explaining/listing symptoms. I cannot speak for anyone but myself here, but as a person who was told by the western medical community that almost all of my "symptoms" were either in my head or could not possibly be celiac disease... I have found this forum a place to ask questions and see what other people deal with.

I was told that regurgitating food was not a classic symptom of the disease, but by talking about it here, I found that some other people deal with it too. My personal list of symptoms is over 20 "things" that happen to my body when I get glutened, so when someone new asks what happens to my body it may appear that I am trying to "out do" the person that posted before me, but really I am just trying to share my information in hopes that it will help someone else.

Like Momma Goose mentioned, there are so many different symptoms that do not happen to everyone, it is complicated.

I am grateful for the forum because it helped give me answers to a myriad of my symptoms that kept confounding medical doctors and myself and by reading other people's lists, I was able to start to put the peaces together and finally start healing.

I hope that you find the site useful!

melmak5 Contributor

*pieces together

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,947
    • Most Online (within 30 mins)
      7,748

    Sinch23
    Newest Member
    Sinch23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.