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

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

hopeonthemove

Recommended Posts

hopeonthemove Newbie
hopeonthemove
Posted

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?

 

 

 

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

Celiac.com Sponsor (A8-M):


freeme808 Apprentice
freeme808
Posted

I'm totally in the same boat as you!!! I feel your frustration.  :unsure: 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 Community Regular
w8in4dave
Posted

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 Apprentice
freeme808
Posted

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 Contributor
Brandiwine
Posted

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. :-/

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748
    ZENken
    Newest Member
    ZENken
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.