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

I'm Hungry!


cindyb1

Recommended Posts

cindyb1 Rookie

The testing to determine if I have celiac is taking forever. I made the mistake of going off gluten last August, so any bloodwork has been negative but I am positive for the H.L.A. DQ2. The dr wants to do an endoscopy because any damage still may show up. 

 

Anyway, I was doing okay avoiding gluten until eating some BBQ from a restaurant. The same day, I ate eggs from another restaurant that tasted powdered, not like a fresh egg. The following day, my stomach was really crampy and I had a headache and felt off. 

 

This week I had dinner at a friends house. There were corn chips and a homemade dip that had no gluten. I ate that plus some BBQ chicken salad. Within an hour of eating, I got all hot and dizzy, felt like I was going to throw up. My stomach hasn't been right since and Im very tired. I never experienced the feeling of I'M GOING TO THROW UP RIGHT NOW.

 

It seems like my reactions to trace amounts of gluten are getting worse!

 

I am seriously afraid to eat anything. Im literally so hungry that my stomach is rumbling.

 

I guess my question is- do people grow more sensitive to gluten and get worse reactions? Does gluten make people throw up? Where in my meal was gluten hiding?

 

Help! 

 

 


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

I am not sure where the gluten was hiding (too many variables to figure out where/how) but I will tell you this: your doctor is wrong if he thinks the biopsy will be valid after being off gluten for 9 months. Sorry, hon.

Consuming gluten for blood tests and biopsy is required. Maybe if it were 3-6 months, but it may not

give you a positive result now.

 

The presence of the DQ2 genes does not mean you have celiac. It means you may be at risk, if you

have a relative with celiac.

 

"Since 1/3 of the general population also have the genes  DQ2 or DQ8 , the presence of them does not imply that the person will develop celiac disease,"

 

Open Original Shared Link

w8in4dave Community Regular

Well eating out and eating at anyones house of course you can get CC'd , I think even at another Celiacs house you can be CC'd some are not as tight as others when it comes to CC'd , I went to my Daughters house and she was having a gluten-free pizza and a regular Pizza, I could not eat the gluten-free pizza anyway it had soy and corn. But I was watching her she put both small pizzas on the same cookie sheet, Then when she had to move them she used the same spatula. I said well even if I could of eaten it I couldn't now. Talk about CC!! She said yea well I know your not eating it. I would not of eaten it anyway because she had it on an older Cookie sheet. she never cover the cookie sheet with foil or anything. 

livinthelife Apprentice

Well eating out and eating at anyones house of course you can get CC'd , I think even at another Celiacs house you can be CC'd some are not as tight as others when it comes to CC'd , I went to my Daughters house and she was having a gluten-free pizza and a regular Pizza, I could not eat the gluten-free pizza anyway it had soy and corn. But I was watching her she put both small pizzas on the same cookie sheet, Then when she had to move them she used the same spatula. I said well even if I could of eaten it I couldn't now. Talk about CC!! She said yea well I know your not eating it. I would not of eaten it anyway because she had it on an older Cookie sheet. she never cover the cookie sheet with foil or anything. 

Last time we went to grill with friends, I took my own chicken and a piece of foil to grill my chicken on so that it didn't touch the grill surface. Also took my own dip and my own chips and told them how sensitive I was. She got out new butter for the potatoes and it was a great evening! 

 

Your CC could've come from anywhere - the eggs, the BBQ sauce, it's just hard to tell. It could've come from a pot or even the grill.

 

I get awful abdominal cramping and then nausea and D for days. My stomach burns, my left eye swells and my foot hurts. And I'm dizzy/off kilter. And I can't complete a thought or a sentence. This is a short list - everyone's symptoms are different. If you know gluten is making you sick then you either have to do a gluten challenge for the test or tell your doc NO NO NO and then stay off of gluten. No way could I do a challenge, but that's just me! 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748

    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.