• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Different Levels Of Celiac?
0

Rate this topic

9 posts in this topic

Recommended Posts

Hello all

Just been wondering, it seems (having been on this forum for a bit reading stories) that there are different 'levels' of celiac. But how can this be, surely you are celiac or you are not? Is this just down to sensitivity? (ie like with an allergy response)

I have been worried about handling bread etc whilst making my little boys sandwiches but I haven't reacted at all? There are crumbs all over the place, no matter how hard i try to keep things clean. Some people say they can't touch anything with gluten, I thought it had to be ingested???

Any thoughts welcome

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


The way my GI specialist put it, you can't be "a little bit celiac" the same way you can't be "a little bit pregnant."

AFAIK, people can have different degrees of response from one another- and individuals can have different degrees of response over time, as well. She also said obvious symptoms of gluten reaction may appear "for the first time" (or get more aggressive, I'm guessing) despite having had celiac already when your immune system is otherwise compromised. In my case, in retrospect, I had some symptoms even when I was young, but it got a lot worse for me within the last several years.

Share this post


Link to post
Share on other sites

I know what you're asking...I always just thought it depended on how far along the disease had progressed. I know some people respond to the diet immediately and some take years. So I assume it's how weak your body has gotten before you were diagnosed. Age might make a difference too. My daughter seemed to get better after only a month. (was age 7)

I believe my reactions are getting worse (and I'm getting more sensitive) the longer I'm gluten free.

Share this post


Link to post
Share on other sites

I agree with the others, it's more about how you react to the gluten and what symptoms you show... With your pregnancy analogy, you could compare how some people tend to sail through pregnancy and feel great, others have morning sickness, some have other health complications, and yet others tend towards multiple births... there's a lot of room for variation.

Share this post


Link to post
Share on other sites
Ads by Google:


This paper discusses it. It seems that there are different levels of celiac. http://www.ncbi.nlm....les/PMC2944025/

I'm trying hard not to just read the bad stuff in this paper, but I'm a little alarmed. This paper as a layman is trying to read it says that the different cells involved can mutate to become lymphoma cells? I am someone who is not responding to a gluten free diet. I have only been 1 year into it, but last endoscopy shows a worsening of the villi, and although I have been eating gluten for 57 years I have never shown any gastric distress but have been diagnosed with anemia, migraines and osteoporosis and until an unrelated endoscopy just found out I have celiac disease. So am I in the group where I should be looking out for lymphoma ?

Share this post


Link to post
Share on other sites

I know what you're asking...I always just thought it depended on how far along the disease had progressed. I know some people respond to the diet immediately and some take years. So I assume it's how weak your body has gotten before you were diagnosed. Age might make a difference too. My daughter seemed to get better after only a month. (was age 7)

I believe my reactions are getting worse (and I'm getting more sensitive) the longer I'm gluten free.

I am the same way. ALl the years prior to being gluten-free, I always had what I know now were symptoms, but I just lived with them every day without realizing why it was happening. When I was finally diagnosed, my Dr said I had very little damage done but she believed I was in the early stages of noticeable damage and had I waited a few more years, it would be worse. I went gluten-free and within 2 weeks, I felt better and still feel better, aside from a couple of setbacks I had. In the beginning of being gluten-free, I could eat gluten and not get sick right away, but now it has been almost 4 months and I feel reactions almost immediately. My stomach bloats, I get nauseous, and my head starts to throb.

Share this post


Link to post
Share on other sites


Ads by Google:


I'm trying hard not to just read the bad stuff in this paper, but I'm a little alarmed. This paper as a layman is trying to read it says that the different cells involved can mutate to become lymphoma cells? I am someone who is not responding to a gluten free diet. I have only been 1 year into it, but last endoscopy shows a worsening of the villi, and although I have been eating gluten for 57 years I have never shown any gastric distress but have been diagnosed with anemia, migraines and osteoporosis and until an unrelated endoscopy just found out I have celiac disease. So am I in the group where I should be looking out for lymphoma ?

I don't know. I hope not. Have you tried a diet of produce and unprocessed meat? That is helped me a lot.

Share this post


Link to post
Share on other sites

So it seems that the longer we are gluten-free the worse a glutening attack could be?? At least so seems the general consensus? I'm now seriously wondering whether there is something that I haven't eliminated in my diet that is causing my ongoing 'loose bowel' problem. It's the only thing still bothering me. (dietician says I'm high on fibre) but maybe I'm still consuming gluten? But where? Ugh, the is so frustrating.

@myquest... What has your doctor advised? Have they actually told you that you are refractory? It's so worrying, I understand your concern. Is there no way you could have been ingesting gluten? All the best

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,132
    • Total Posts
      939,838
  • Member Statistics

    • Total Members
      66,112
    • Most Online
      3,093

    Newest Member
    OliviaFW
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yeah I've wondered a bit if I'm not getting all the other B vitamins from food alone and if they'd do me well. Magnesium content in the keto vitals isn't a lot. I try to get some more through food but I doubt it's optimal. I might have to look into that stuff. Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's. Hope you'll be able to eat meat again soon, even if in small amounts. So much this. Every day I want to get up and do anything, and can't and it sucks. I want to climb the walls, get away from myself... Ugh, this takes too long, and I'm too impatient. Yeah, looks like I have to cook everything. I figured I'd at least be able to eat raw baby spinach. I need SOMETHING I can just grab and eat, but it gives me the same slightly itchy mouth that fruit gives me. I've been allergic to fruit forever... Don't have this problem with my steamed broccoli and cauliflower. I already cook everything else I eat. (and it's all organic, real food) So annoying to have to spend half my day cooking, not that I have anything else I can do. But what do I do when (or if) I get healthy again and am like, out somewhere? Damn I miss potato chips. I'll tweak a few things here and there and keep trying.
    • I see banana pudding in your future! ENJOY! I'm glad you came back to report what happened with the cookies.
    • Hey Josh! Corn is hard to digest even when one has a perfect gut. Imagine a damaged gut trying to cope with corn. Ditch the corn for a while. As far as soy goes, many of us, especially in the first 6 months to a year, have problems with soy. Some have problems with soy for years & years & others are able to have soy after their guts heal up. Some never have problems with soy at all. We are all individuals & react differently to different things.  I've never heard anyone having problems with sunflower or safflower oil in the 6 years I've been on this site. As far as lactose goes, again, I'm going to say we are all individuals...... I never had a problem with lactose, some do, some cut it out for a period of time & then later find it presents no problem for them and some can not tolerate it at all and some don't have any problem. A food log is a great tool for you to use to figure out what might be a problem.
    • Ok just to set the record straight, I tried one more cookie and then another and now half the package is gone so clearly these cookies are not to blame for the reaction I had that day. Still don't know what got me but it wasn't these!
    • Welcome, Josh! You have two choices: 1) go back on gluten and get tested.  This will help confirm if you have celiac disease or not.  Some 10% of celiacs are seronegative.  You should confirm if you had the complete celiac panel.  I personally am only positive on the DGP IgA, even on follow-up Testing.  Okay, if you have NCGI, the treatment is the same.  But with a celiac disease diagnosis, that puts you at risk for other autoimmune disorders or cancer (though rare).    You could have both IBD (Crohn’s or Ulcerative Colitis) and celiac disease or maybe Hashimoto’s Thyroiditis.  Knowing this, your doctors can be on the alert for future problems.  It can also help you adhere to a LIFELONG gluten free diet because you will have NO DOUBT.  The endoscopy also provides an initial baseline.  2) stay gluten free for life.  Learn all that you can about cross contamination, avoid eating out (it is like Russian Roulette).  Eat fewer processed foods.  Learn to read labels.  Keep a food and symptom diary to identify other food intolerances.  Read our Newbie 101 advice pinned at the top of the “Coping”section of the forum.  Healing can take months to YEARS.   I have a formal diagnosis (four years ago) and my only known symptom was anemia.  No GI issues.   My hubby went gluten-free 16 years ago per the poor advice of two medical doctors.  We both know odds are that he has celiac disease, but we can not afford for him to be sick for a three month gluten challenge.    He will tell you that I get way more support from medical, family and friends.  We were easily able to get our daughter tested because of my diagnosis.  Easy for me to get a bone scan confirming osteoporosis, etc.   Only you can decide what is best in your case.  I wish you well.  
  • Upcoming Events