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Symptoms


Lauriann

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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... :)


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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

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    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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