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Still A Bit Confused By Celiac Disease (Also: Celiac Petition)

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I've been researching Celiac Disease like mad and I am still, admittedly, confused by some of what is said about this illness. This recent video and petition discusses the confusion about Celiac Disease (video below). And by the way, I've been treated this way countless times by doctors, so sign the petition and watch the video by clicking here. I also saw my GI doctor for the first time and he treated my Celiac Disease by handing me a pamphlet and told me to stay away from Gluten. So I thought, okay. That is simple enough.

From this video with TV Actress Jennifer Esposito says, "...They think you eat a Gluten-free diet and therefore you're better. And that's not the case." I understand that the Gluten-free diet is one of the most important aspects of treatment. My thought was eating Gluten-free would help heal well...mostly everything on its own because that is how it has been explained to me. I suppose I really don't know enough. And the information my GI Doctor gave me was simple, "Eat a Gluten-free diet and you are better." He didn't say anything all.

She also speaks about nerve damage, stomach problems, etc. Does anyone know of other associated with Celiac Disease? Is there a list? And what do I do to get proper diagnoses (of course, see a bettet GI doctor for starters)?

Anyway, I'd like to say it is becoming far too common with how rudely this doctor's treat their patients - or just other people they either don't believe have these ailments or they just don't like. The petition is short of the needed votes, and I have seen work many times before.

Also, what he said at the end about stress and that it obviously took a tole completely overrided her and her doctor's explanation of Celiac Disease. She explained that Celiac Disease was the culprit of her knees giving out (exhastion). He explained and finalized (he is the doctor!) that stress was the culprit. I don't know if this was policital, to downplay Celiac Disease, or what was going on, but it is inexcusable.

Thanks for your help.


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Hi Robby-

Here is the University of Chicago's complete list of symptoms that are associated with Celiac Disease. The malabsorption of nutrients caused by celiac damage of the small intestine can effect any system in the body -- the human body will compensate when missing nutrients until it can no longer function. This is why those of us that went undiagnosed, misdiagnosed or dismissed for decades are often in very poor health by the time we get diagnosed.

Keep reading, researching and learning - I remember well when I realized that simply removing gluten wasn't going to be enough to get my body to heal, but healing is possible given time and determination.

How were you originally diagnosed/told to remove gluten - based on blood work? endo? symptoms alone?


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I was diagnosed by an Allergist who did blood work on me. My Iga level was 138.09/20, which I have asked out here and have heard that is pretty high. From here on, I've just been eating Gluten-free but still feel absolutely terrible. Something is still wrong and I have seen worthless doctors, which is eating up a lot of time and money.

I definitely have the determination. Seems like it is lacking in many of the doctors I have seen.

Thanks for the reply!


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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
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