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

Couple Of Things


charlotte-hall

Recommended Posts

charlotte-hall Apprentice

I was diagnosed in December 2011, with a 98% positive blood test. I got no better, so 2 weeks ago, I went for a biopsy. The results show, that I a, obviously very very sensitive to gluten. The consultant said I am the most sensitive he's ever seen. Apparently I had a score of 284 on the blood test, and normal is under 10. I'm not sure what that score is about? But surely thats not good! I am very disheartened as I have been on a gluten free diet for 4 months. But I suppose I need to concentrate more on cross contamination. I live in a house where there is still gluten.

I was just wondering on some tips that could help me get better? Including how to prevent cross contamination, and also what does that score signify on the blood test? And what does super sensitive mean, is it possible that a crumb could make me ill? And also what do I do if i do intake some gluten and how long will it take for me to recover? Although I feel ill constantly!

Many thanks! Hoping for some answers and to recover soon :(


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



Celiac.com Sponsor (A8-M):



JustNana Apprentice

Charlotte

I am sorry you are getting no improvement in 4 months. I am not one of the experts here. What are your worst symptoms? Do you have the Dermatitis Herpetiformis or Hashimoto's thyroid too? How did your vitamin panel come out? Were you gluten-free when the biopsy was done? These are all things to know. To my knowledge the biopsied samples are looked at under a microscope to see how badly damaged the villi of the small intestine are. I am not aware of a test that can tell how badly you may react to a minute amount of gluten, but after being gluten-free you become MORE sensitive.

Are you having flareups or just no change going gluten-free?

Hang in there. People who know far more than I will respond no doubt.

WElLCOME :-)

Lisa Mentor

Hey Babe! I really isn't the end of the world, but it might seem like it right now. B)

Being diagnosed with Celiac means that you have to be very careful about what you eat, at home and at school. And being 14, that's pretty hard to do.

Do your mom and dad have a good idea about what you can eat and what you can't? Can they help you make choices.

The key is to be totally gluten free, yet being able to hang with your friends and feel "normal".

You really should eat nothing with gluten. I can suggest some teen age food that you can enjoy with your friends, if you would like.

Takala Enthusiast

"Super sensitive" means that you are one of the people who react to smaller amounts of gluten. There is a wide variation in how sensitive people are who are gluten intolerant or celiac. I have read here that some researchers claim that a typical celiac can handle "x" very small amount of gluten per day, my reaction has always been, :ph34r::blink: is that a typo or did he really say that ?

Also, the longer one is off of gluten, if one is celiac/gluten intolerant, the more sensitive one becomes if one accidentally ingests a small amount of it. They don't know why this happens (yet) but it is a real phenomena.

To prevent cross contamination, you have to be almost neurotic in a mixed household. This is where, if you have any sort of over - meticulous tendencies, go ahead and use them. For example, I have lived gluten free with my spouse for going on nine years now, he is the only person who I would trust to cook for me, outside of certain restaurants or maybe a few people here, and even HE has gotten me. Our house is gluten free (he did this voluntarily after about 2 years in ) but sometimes an "iffy" item makes it way in, which we give to him to eat. Example: this weekend I laid a cutting knife down on a paper towel on the counter, after I had cut off a piece of cheese to eat. He comes along, opens up a bag of dried fruit I had not checked the status of, takes several pieces of it out to snack on, and absentmindedly lays them right down on the blade of the knife. I am looking at this, thinking, oh, how cute. :huh: He has the entire kitchen and he has managed to zero in on the cutting tool I was using, before he gets a paper napkin, and I just managed to see this. So I took the knife and quickly cleaned it and he saw me and said, "oh...." :o They don't mean to do this, but they (gluten eaters) DO THIS ALL THE TIME.

This means that it is best, if you are in a kitchen with mixed items, to be there if and when somebody else is preparing something you might eat at the same time they're messing around with something they might eat.

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. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,433
    • Most Online (within 30 mins)
      7,748

    emmelyn
    Newest Member
    emmelyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.