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

Do I Really Have To Eat Gluten Again?

heathenly

Recommended Posts

heathenly Apprentice
heathenly
Posted

...for testing purposes? After two+ weeks of eating gluten-free, the thought of having to eat it for one day (much less 90) makes me want to cry.

But I do want a diagnosis. And am scared to death I'll go through this just to be told I'm not Celiac. Not that I want to be, but I seem like the poster child for Celiac symptoms, and I want medical permission/justification to never eat gluten again.

Signed,

Awake at 3 a.m. Because of a Reaction to gluten-free Corn Pasta

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

Yes, you reAlly do. By being 2 weeks gluten-free you run the risk of your antibodies already dropping, so if you are going to be tested, start eating it immediately. I don't think you would need a 90 day challenge though, since you haven't been gluten-free too long. Just start eating it and schedule the tests. Be sure it is a full panel.

And be prepared for a negative result. It doesn't mean you aren't sick from eating gluten. 30% of celiacs will have negative blood work, and non-celiac gluten intolerance will always test negative.

roxieb73 Contributor
roxieb73
Posted

I did the same thing and had the outcome you fear. I was told because of my genes that I am not celiac. However I do have Lichen Planus which is an auto immune reaction to Gluten. I also have a lot of the symptoms. Including Vitamin deficeincy. My Vit D was critically low. Then I have iron deficeincy anemia, so low iron, b12, folic acid. Low normal mag and who know what else. I also have many neurological symptoms. But not Celiac. lol I believe in the future they will include my gene type in the Celiac family in the mean time... I have been told to eat Gluten Free? and take a crap load of vitamins. Hmmm sounds like Celiac to me.

Bottom line even if they say you are not Celiac doesn't mean Gluten isn't your problem! ;) If you want try the diet and just see if it helps. If you really want the diagnosis YES you will need to eat gluten and still might have a negative reaction. Sucks but it is what happens.

GlutenFreeAustinite Contributor
GlutenFreeAustinite
Posted

Yes, unfortunately, you do. I was gluten-free for 18 months quite successfully, but have been on gluten for two months now for testing. And you have to eat it for at least two months, preferably more. My blood tests were negative after one month, but positive after two. By the time my scheduled endoscopy/biopsy rolls around, I'll have been eating it for three.

While it's fun to eat all the gluteny foods you normally can't, and REALLY nice to not constantly be checking ingredients, it's rough. I've been sick/getting sicker over the past two months and I'm so ready to be done. Good luck though!

heathenly Apprentice
heathenly
Posted
  • Author

Yeah, I know gluten is a problem, but if it's Celiac I need a formal DX. It would be useful for my family. My son has Crohn's and I think maybe other people in my family have gluten sensitivities or Celiac. Suddenly lots of things would make medical sense!

Back to gluten until testing! Hopefully I didn't do too much "damage" (ha) by staying gluten-free for this short period of time... last week I would have been thrilled for an excuse to eat gluten; this week I dread it. So not worth it.

heathenly Apprentice
heathenly
Posted
  • Author

And thank you all for the replies!

MoMof2Boyz Enthusiast
MoMof2Boyz
Posted

Yes, unfortunately, you do. I was gluten-free for 18 months quite successfully, but have been on gluten for two months now for testing. And you have to eat it for at least two months, preferably more. My blood tests were negative after one month, but positive after two. By the time my scheduled endoscopy/biopsy rolls around, I'll have been eating it for three.

While it's fun to eat all the gluteny foods you normally can't, and REALLY nice to not constantly be checking ingredients, it's rough. I've been sick/getting sicker over the past two months and I'm so ready to be done. Good luck though!

did you eat foods with gluten for every meal?

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

Celiac.com Sponsor (A8-M):


GlutenFreeAustinite Contributor
GlutenFreeAustinite
Posted

Not every meal, but I'd say probably at at least 2 meals. And maybe a few snacks.

heathenly Apprentice
heathenly
Posted
  • Author

I've been eating gluten again since Friday (in preparation for tomorrow's GI visit, and likely, blood test), and I am an emotional, bloated mess. Hate this. Also, my nasal allergies have all the sudden started back up, and my sleep problems. Fatigue. Bleh. Energy level low. Can't wait to not have to do this anymore.

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.