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. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    4. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
×
×
  • 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.