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

Different Levels Of Celiac?

designerstubble

Recommended Posts

designerstubble Enthusiast
designerstubble
Posted

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

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

Celiac.com Sponsor (A8-M):


Em314 Explorer
Em314
Posted

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.

srall Contributor
srall
Posted

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.

nvsmom Community Regular
nvsmom
Posted

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.

dilettantesteph Collaborator
dilettantesteph
Posted

This paper discusses it. It seems that there are different levels of celiac. Open Original Shared Link

myquest7846 Newbie
myquest7846
Posted

This paper discusses it. It seems that there are different levels of celiac. Open Original Shared Link

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 ?
KMMO320 Contributor
KMMO320
Posted

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.

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

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.

designerstubble Enthusiast
designerstubble
Posted
  • Author

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

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,647
    • Most Online (within 30 mins)
      7,748
    Julie 911
    Newest Member
    Julie 911
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.