Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,316
    • Most Online (within 30 mins)
      7,748

    Steffieg
    Newest Member
    Steffieg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
    • trents
      Welcome to the forum, @Mrs. Cedrone! Among the various causes for canker sores, are "Nutritional problems like too little vitamin B12, zinc, folic acid, or iron" https://www.webmd.com/oral-health/canker-sores Could you be deficient on something?
×
×
  • Create New...