Undiagnosed, Feeling Unwell, Not Sure What To Do Next!

[hopeonthemove]

Hi!

In the last 2 years or so I've come to realize that desserts (with gluten and esp those with gluten and lactose) and some foods (pasta, crackers, etc) have kind of intense reactions with my body, and I've tried to stay away from them.  I haven't been tested, I'm kind of afraid of the cost of it knowing that it's only partially accurate, but some of my symptoms are:

 

tiredness (serious food coma/crashed on the couch after "white foods" inc pasta, potato, pizza, too much sugar, etc)

increased depression

bloating in stomach and face

scalp psoraisis, thinning hair

stomach cramps/diarrhea (I find that I only get this once I have seriously overdone it on gluten, it seems like I can get away with small amounts without this happening)

unable to lose weight

all-over body aches

enamel damage (the last time I went to the dentist, I had 7 cavities!  I've only had 3 others in my life)

 

My friend has very strong symptoms of celiac, she vomits whenever she eats even the smallest amount, but my mostly mild symptoms kind of lure me into the thought that it's too expensive and hypochondriac-like to go get tested, or really change my lifestyle if it's not presenting super strong.

 

I know that the most sensible thing would be to just cut out all gluten.  

Really, I know.  

I often feel like if someone could just walk up to me and say: "You have celiac disease.  You're going to kill yourself if you don't clean up your eating.", I would be able to do it with much more conviction.  And I can play those head games with myself, saying, "Yeah, I probably have it", but honestly I feel like I'm riding on the coattails of people who've actually been diagnosed.  Even though I know it would change my mindset and help me commit, is it weird to tell other people I have celiac when I don't know for sure?

 

 

 

[freeme808]

I'm totally in the same boat as you!!! I feel your frustration.   I did go out of my way and pay for stool testing, which came did come back positive as far as having a reaction to it. I also have two genes(one from each parent) that supposedly makes me so much more prone to having this reaction? It said that I don't have the gene specific to Celiac and that Celiac is unlikely do to that fact. BUT I've also heard contradicting stories about the gene thing. Im at this point, where I think I might go in and tell the doctor to just prove me wrong...if he thinks that I don't have it, then please go ahead and prove me wrong!(I remember a lady saying that to her doc, and well she did have it). Like I said, cause even if I don't have it, I know I have a severe reaction to gluten. I think my fuel to know whether or not is due to 1) I want to start trying for a baby within the next year, and need to know for the sake of my child 2) on a social level it would be easier for me to deal, heck even on a personal level. 

Im think I'm just trying to figure out within myself how important knowing or not is...I know it's going to a bit of a frustrating process to go in one more time, but I'm thinking, at least I'll hopefully, finally know?

I'm just debating if I should....

[w8in4dave]

I also know what your going thru!! I have alot of the classic symptoms , I went in for blood work and it came back negative , I decided it was up to me to know what is good for my body and what isn't. I know gluten is not good for me!! So I decided on my own "I am not going back for more test" I will take care of me!! I will let my Dr. know next time I go see him I have gone gluten free, because he should know. If I continue to feel bad and have all the same symptoms I had before then, I know it is not Celiac, I may just be sensitive, But thats ok !! I will take care of me!! 

[freeme808]

w8indave, YES! Me too! 

I think we should listen to ourselves. I was really torn today...but, after a reality check...I know I can't doubt myself cause others do. I know what's best for me. I think the more confident I am in that aspect, maybe I will get more respect from others. 

 

Good luck to you both! 

[Brandiwine]

I wanted to get the tests done because it is weird to say you have Celiac when you don't have a diagnoses and people don't take it seriously if you call it a sensitivity. I just can not make myself go back to eating gluten knowing what it does to me, if one meal would be enough to test I still wouldn't want to but probably would. I just can't suffer for weeks for a diagnoses. :-/