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

Scared That Its Not Celiacs?

narcissa-bell

Recommended Posts

narcissa-bell Newbie
narcissa-bell
Posted

Just had blood work done today (waiting on results) and I have been scheduled for an endoscopy a week from now. This all started because I have been losing my hair like crazy, im bloated CONSTANTLY, always sleepy and foggy, etc... As a child I was always incredibly small (failure to thrive) and they even thought I was autistic for the first 2 years of my life. I have PCOS and low vitamin D and I have this instinct that there is some underlying problem that is exacerbating if not creating the PCOS and low vitamin D.... Looking at symptoms and family history, celiacs or Gluten Intolerance seems to fit the bill... Im scared though that its NOT gluten intolerance because then I don't know what Ill do.. im miserable, and im going bald (im only 27 years old). And since for the past few weeks i have been making sure to eat plenty of gluten because of all this crazy annoying testing and im feeling just AWFUL.. my boss asked me if i was preggers yesterday (not overweight, 5'6' and 145lbs) because im so bloated.

Anybody else scared or was scared that it WASNT gluten intolerance? I just feel with Gluten Intolerance i will know how to manage it, it wont be easy by any means but ill KNOW what to do to make it better... ugh... i hate waiting!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I can't say that I was scared it wasn't celiac because no one ever told me what it was. My doctors called it Sprue and said just to be happy I didn't have it. I do know how it feels to be so very sick and not have the doctors have a clue. I would go gluten free the day you have the endoscopy done no matter what the results of the blood tests. There are false negatives for both blood and endo but your body will most likely give you the answer. You have come to a great place to learn alot about the gluten free life and you can feel free to post any questions you need to. Welcome and I hope you are feeling better soon.

JillianLindsay Enthusiast
JillianLindsay
Posted

I was afraid it wouldn't be celiac disease! I had been sick since Dec, including fainting due to very low BP and even seizures! I went through hell with my health and with a ridiculous amount of tests. When the blood test came back positive for celiac disease I was so relieved - yes, also shocked and had no idea what it was - ...but after I got over the initial shock I was so relieved to finally have an answer so that I could start working at getting better! After the endoscopy wasn't conclusive I've been afraid that it isn't celiac disease but the gluten-free diet has given me great relief and so I know I'm on the right track :) I find out on Aug. 25th the results of the biopsies and HLA typing.

Even if the tests aren't conclusive, go gluten-free as soon as you're done all your testing (as you know, don't go gluten-free before they're all done so you don't get false neg). Whatever the tests say, if you see relief after going on the gluten-free diet then you'll have your answer and you'll start feeling better!

I'm sorry you're going through such a hard time and hope you get some answers soon. Good luck!

Jillian

ang1e0251 Contributor
ang1e0251
Posted

I'm so glad you are getting tested and I hope the results are what you want. Most of all, just listen to your body when you are ready to go gluten-free. It will tell you if you are on the right, track.

My niece has PCOS and diabetes. I hope her new endocrinologist is smart enough to test her too. She doesn't really comment on my suggestions that she be tested. I just want her to be healthy again. You are both too young to be so sick.

narcissa-bell Newbie
narcissa-bell
Posted
  • Author

Thanks for your replies! The minute I wake up after the endoscopy im not touching any gluten! And i cant wait! im looking forward to feeling light and fancy free :)

mhope Newbie
mhope
Posted

hey!

I think I am not so much scared that what I'm suffering from isn't celiac or a gluten sensitivity, but I will definitely be disappointed if it is not. I have never imagined that something could A- explain my miserable quality of life and B- have a cure that can completely change my life. As much as I will be disappointed... I feel like it's expected, because there have never been answers! So, I totally know what you're feeling, and it is no fun! Just having an answer and a direction seems like a miracle! Good luck to you!

Archived

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

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


  • Member Statistics

    • Total Members
      131,984
    • Most Online (within 30 mins)
      7,748
    MARYANN RICHARDS
    Newest Member
    MARYANN RICHARDS
    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

    • 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! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.