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

Negative Blood Test, Still Might Have Celiac?


xoxobriannamarie

Recommended Posts

xoxobriannamarie Newbie

Hi everyone, I'm 14 years old and I have recently had a lot of stomach problems. i have had blood tests done, and an ultra sound to rule out gall bladder problems. My symptoms range from stomach cramping, fatigue, being tired all the time, a little acid reflux (which im supposed to be taking a pill for), and a weird skin rash.

My dad had crohn's disease,is lactose intolerant, and has a lot of stomach problems. I have already tried cutting out products with lactose in them, and it didnt make a difference.

My last blood test came back negative for gluten intolerance. Could i still have celiac? I have been doing TONS of research, and I am really convinced that I have Celiac. Should i try a gluten free diet? Im so sick of feeling like crap all the time. I seriously feel like i'm 40 years old sometimes, not a young teenager. I want my body to be healthy, and I want to FEEL healthy.

thank you for all of your help (:


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hello, and welcome to the forum.

Actually, there is no blood test for gluten intolerance, per se. The only tests currently available test for celiac disease only, which is a specific form of gluten intolerance. Doctors (and researchers) are now recognizing that gluten intolerance exists outside of celiac disease (called non-celiac gluten intolerance) but to date they have not been able to define it or find a test for it. The best way to find out if you are gluten intolerant is to stop eating it and see if you get better. :)

xoxobriannamarie Newbie

thank you for your help:) I am definitely going to try a gluten free diet. do you have any tips in terms of making sure I dont accidentally get contaminated with gluten? thank you!

Luddie Newbie

Hello, and welcome to the forum.

Actually, there is no blood test for gluten intolerance, per se. The only tests currently available test for celiac disease only, which is a specific form of gluten intolerance. Doctors (and researchers) are now recognizing that gluten intolerance exists outside of celiac disease (called non-celiac gluten intolerance) but to date they have not been able to define it or find a test for it. The best way to find out if you are gluten intolerant is to stop eating it and see if you get better. :)

True, stopping it would be one way to see, but if you're planning to have any endoscopic testing done you shouldn't stop eating gluten before you have it. I know people (in my own familly) who self-diagnosed (after seeing at least two doctors) and went gluten-free and at least their bathroom symptoms all went away! I myself did not have an endoscopy but relied on my doctors perception (and a positive genetic test) to say I have celiac. It's just so personal! Hang in there. As long as you're really still looking for answers you'll get them. Check out the Specific Carbohydrate Diet and maybe even the GAPS. Every little bit of additional information helps, although trying to shuffle them all together into one deck is challenging at first.

Luddie :)

ravenwoodglass Mentor

thank you for your help:) I am definitely going to try a gluten free diet. do you have any tips in terms of making sure I dont accidentally get contaminated with gluten? thank you!

Go with as much whole unprocessed food as you can. Meat, fish, chicken, beans, rice, potatos, fruit and veggies are all gluten free in their natural stare. You want to avoid anything that has wheat, rye, barley or oats to avoid gluten. If you live in an area that has a Wegmans they label all their gluten free food with a circle G. Kraft and Unilever brands will clearly label gluten ingredients. You don't want to use the same toaster for gluten free breads as you did for wheat bread. And avoid using scratched cookware that has been used for gluten food as well as cutting boards and wooden utensils. For your gluten free pasta you will need to have a different strainer also.

The diet can be hard to get used to at first and don't be surprised if you get a bit moody when you first start it as some of us do go through withdrawl.

xoxobriannamarie Newbie

thank you so much for all of your help!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,990
    • 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
      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
      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
      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
      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
      @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.