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

Does Eating Gluten Make All Celiacs Sick?


alexsami

Recommended Posts

alexsami Contributor

the reason i ask is because i went gluten free for a month...and this past week i have been eating gluten....i do NOT get horrible sick like i hear most of you do.....my stools are still somewhat suspect but they still werent great gluten free yet either.....i am having an endoscopy wednesday because of an elevated gliadin antibody.....just curious.....thanks


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



Celiac.com Sponsor (A8-M):



alexsami Contributor

i should add that i do get bloated but not violently ill like some people

MerrillC1977 Apprentice

My understanding is that a person can have Celilac Disease without experiencing any intestinal symptoms at all (gas, bloating, diarrhea, etc)....however, if you do have Celiac Disease, eating gluten will still seriously damage your intestines even if you aren't feeling it happen. So, just because you don't have the "typical" symptoms doesn't mean you aren't hurting yourself.

pricklypear1971 Community Regular

No. Not everyone gets sick at their stomach.

Some have very mild stomach issues, or no issues.

Some develop reflux over long periods of exposure.

Some get migraines, etc., vague symptoms re: other systems.

The list goes on. The longer you eat it, the more intense your symptoms may become.

alexsami Contributor

No. Not everyone gets sick at their stomach.

Some have very mild stomach issues, or no issues.

Some develop reflux over long periods of exposure.

Some get migraines, etc., vague symptoms re: other systems.

The list goes on. The longer you eat it, the more intense your symptoms may become.

that makes sense....thanks

love2travel Mentor

When I ate gluten for 3.5 months on my gluten challenge I did not get sick even once. Now that I have been strictly gluten-free six months I do not care to find out whether I will get sick or not! Has not happened since I went gluten-free, either. The thought of all that damage to my villi (they were totally flat according to my GI doctor) keeps me on the right path.

The past month I did get quite sick but linked it to dairy which I have now eliminated as well.

AVR1962 Collaborator

the reason i ask is because i went gluten free for a month...and this past week i have been eating gluten....i do NOT get horrible sick like i hear most of you do.....my stools are still somewhat suspect but they still werent great gluten free yet either.....i am having an endoscopy wednesday because of an elevated gliadin antibody.....just curious.....thanks

My issues are not so much digestive. I get very dizzy, my speach is effected, my memory gets bad, I may even have blurred vision.


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



Celiac.com Sponsor (A8-M):



Librariangirl Newbie

I have no symptoms except for my DH.

MerrillC1977 Apprentice

I have no symptoms except for my DH.

So, if a person is actually diagnosed with Celiac, but never had any intestinal symptoms....can that person assume that as long as they don't ahve intestinal symptoms, that their intestines are not being damaged (i.e. they are not on the way to intestinal cancer unless/until they have intestinal symptoms)?

Can a diagnosed Celiac person who never gets intestinal symptoms safely get away with eating gluten once in a while? (I understand that other symptoms might be triggered in this process.)

Bubba's Mom Enthusiast

If you are a diagnosed Celiac you can NEVER have gluten! The damage will still happen. You may not notice it until you get to the point that you have malabsoption and start to get various symptoms that can come from that.

The Lymphoma can occur too without tummy symptoms.

I've had an intestinal cancer(not Lymphoma). I had no symptoms for quite a while. With any cancer it's common to have no noticeable symptoms until it has progressed to a very serious stage.

PLEASE don't ever take the chance that "it might not happen to you..just a little gluten won't hurt."

love2travel Mentor

So, if a person is actually diagnosed with Celiac, but never had any intestinal symptoms....can that person assume that as long as they don't ahve intestinal symptoms, that their intestines are not being damaged (i.e. they are not on the way to intestinal cancer unless/until they have intestinal symptoms)?

Can a diagnosed Celiac person who never gets intestinal symptoms safely get away with eating gluten once in a while? (I understand that other symptoms might be triggered in this process.)

Sadly, no. I did not have any GI symptoms but my biopsies showed severe damage to my villi - they were totally flattened. I was told I have to be all the more vigilent for that reason.

Don't forget that once you are off gluten for awhile many people seem to become more and more sensitive if accidentally glutened so we could still get hit hard in the future. We can also have other food intolerances occur suddenly; I was off gluten five months before I strongly reacted to dairy.

MerrillC1977 Apprentice

Thank you, Bubba's Mom and love2travel, for those answers.

Here's another question -- once going OFF gluten, do the previously damaged villi recover?

love2travel Mentor

Thank you, Bubba's Mom and love2travel, for those answers.

Here's another question -- once going OFF gluten, do the previously damaged villi recover?

You're welcome. When I first joined this board I was SO grateful for all the help I received - the amount of information here is incredible.

Your damaged villi certainly can recover; in fact, they can in the vast majority of people. I was told it can take between 2-5 years for that to happen. Of course recovery will be quicker in some and longer in others. I had bloodwork done recently; initially six months ago the values were WAY off the chart positive and now they are negative!! As I do not feel ill from eating gluten I requested bloodwork to ensure I was not getting any accidentally. So, it shows that I am starting to heal.

Don't forget that although our villi heal, we can never, ever eat gluten again because damage to the villi can happen quickly (though likely cumulatively but it does not take much).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,387
    • Most Online (within 30 mins)
      7,748

    Tim Semas
    Newest Member
    Tim Semas
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...