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

Am I Really A Celiac?

Blessings

By Blessings
in Coping with Celiac Disease

Recommended Posts

Blessings Explorer
Blessings
Posted

I constantly want to test to see if I will react. I usually have a reaction when we go out to eat. When I have been glutened it usually lasts about 2 weeks. When I mention that I want to eat something that's not legal all of my family yell NO! They like me better than the evil twin that comes out with gluten. It just doesn't click in my brain. Whenever I feel good for a while I think maybe its not celiac. My family and I know it but I just can't grasp it.

I think one of my problems is that over the years I have had bloodwork 3 times and they were all negative. One test came back high IGA 393 ref range (69.3-309.0). My biopsy came back positive. I have the HLA-DQ8 gene. My GI calls it Latent Celiac. Pill camera was normal. He also calls my Crohns Latent Crohns. I have all the issues but their ?Latent?

Anyone else in unbelief and want to keep testing it?

God bless

Vicky

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

Vicky...you had a POS biopsy....the gold standard for Celiac AND you have a Celiac gene. You are Celiac, whether you believe so or not. It isnt latent. And I assume some sort of symptoms got you to the GI doctor. You say you are improved. Do you want those symptoms to come back? Are a return of symptoms not enough to convince you? Will you be one of those people who starts eating gluten again and doesnt get convinced until you develop other auto-immune diseases like diabetes, MS, RA....or perhaps Celiac related lymphoma would convince you? It is a very hard to treat cancer in Celiacs.

Not sure what it would take to convince you......only you can decide that.

IMWalt Contributor
IMWalt
Posted
I constantly want to test to see if I will react.

Anyone else in unbelief and want to keep testing it?

God bless

Vicky

Yep. Just last night I drank a regular beer. A little bit later I had some gurgling and gas, and then this AM a little D. My wife yells at me (I didn't tell her about last night), but I keep hoping maybe it's coincidence that when I eat something with gluten in it I have D the next morning and gas all night. So now I am up to 6 times trying in the last 4 months, and gas 5 and D all six. It's frustrating to me mainly because of the severity of the reaction. Some times my insides will churn for a week after from a tiny little amount, and another time I eat more, and just have a little D. Sooner or later I will just give up trying to figure it all out.

Walt

JNBunnie1 Community Regular
JNBunnie1
Posted
Yep. Just last night I drank a regular beer. A little bit later I had some gurgling and gas, and then this AM a little D. My wife yells at me (I didn't tell her about last night), but I keep hoping maybe it's coincidence that when I eat something with gluten in it I have D the next morning and gas all night. So now I am up to 6 times trying in the last 4 months, and gas 5 and D all six. It's frustrating to me mainly because of the severity of the reaction. Some times my insides will churn for a week after from a tiny little amount, and another time I eat more, and just have a little D. Sooner or later I will just give up trying to figure it all out.

Walt

See, this is totally not a problem for me. My father died of leukemia at 53, and I get sick for a full month (miserably, can't work for part of the time sick) off even the tiniest bit of gluten. Those two things are plenty to keep me from even doubting, or being tempted to cheat.

oceangirl Collaborator
oceangirl
Posted

severe symptoms- me, too!

lisa

jamrock Rookie
jamrock
Posted
Vicky...you had a POS biopsy....the gold standard for Celiac AND you have a Celiac gene. You are Celiac, whether you believe so or not. It isnt latent. And I assume some sort of symptoms got you to the GI doctor. You say you are improved. Do you want those symptoms to come back? Are a return of symptoms not enough to convince you? Will you be one of those people who starts eating gluten again and doesnt get convinced until you develop other auto-immune diseases like diabetes, MS, RA....or perhaps Celiac related lymphoma would convince you? It is a very hard to treat cancer in Celiacs.

Not sure what it would take to convince you......only you can decide that.

Believe you stay much healthier without that food, I felt that way in the initial months of avoiding gluten everynow and again I would cheat a little get sick and then I finally gave up and avoided gluten as best as I could, it is a life changer but like everything else in life one learns how to adjust

Blessings Explorer
Blessings
Posted
  • Author

I just had a couple of days of depression. They were enough to make me forget about cheating again. thanks for all the encouragement. I will be good! I will be good! I will be good! I WILL! I WILL! At least I will keep telling myself I will be good. :D

God bless,

Vikcy

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

Celiac.com Sponsor (A8-M):


pele Rookie
pele
Posted

Yikes!! The only reason I can think that any celiac would purposely eat gluten is lack of understanding of what gluten does to your body. Please read Dr. Peter Green's book Celiac Disease: A Hidden Epidemic or watch this video from UCSD on youtube:

Open Original Shared Link

Archived

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

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


  • Member Statistics

    • Total Members
      129,638
    • Most Online (within 30 mins)
      7,748
    Clilly
    Newest Member
    Clilly
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Dealing with celiac and menstrual cycle

      By Scott Adams · Posted

      Good point, as thyroid conditions are more common in those with celiac disease: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/
    • Scott Adams
      Fodzyme

      By Scott Adams · Posted

      @DebD5 it sounds like you are in the super sensitive celiac disease zone--and if so your reactions are real, and not psychological, as your doctor implied.  It's also possible you have other dietary triggers so be sure to look at that article in my last post in this thread.
    • DebD5
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By DebD5 · Posted

      I would like to say you saved me. I’ve been so sick the last few years, celiac since 1997. And reading your post about the other glutens/grains that can be sensitive to celiacs, is the only thing that has ever helped me. Since going off a carbohydrates/grains, even gluten-free ones, My chronic pain is  85% better. I’m actually losing weight which, that’s a long story but was impossible. I definitely am like you. Thank you so very much for posting. For some of celiacs I do believe this is the magic key. 
    • DebD5
      Curious if I should quit my job

      By DebD5 · Posted

      I 100% believe if you were sticking gluten items, especially flour, and breathed it in you could be glutened. I’m a celiac for almost 30 years. For the first ten years as a celiac I’d help my polish family make pierogis at Christmas time. I would only cook them at the stove and I didn’t touch anything with my hands using spoons. But the flour is in the air. And I’d get violently ill for 1-2 weeks after the last few years I did it. Wearing a back is a great suggestion and washing your clothes and showering when you get home. Good luck. And I’m so sorry your parents are emotionally supporting you. 
    • DebD5
      Dealing with celiac and menstrual cycle

      By DebD5 · Posted

      Have you had your thyroid checked? I was diagnosed at 24 with celiac. Lost my period permanently at 32. Found out six months after I lost my period that I had 1 ovary with 1 follicle. I had a child already but wanted more. Ended up having two more children with one ovary and one follicle. But my doctors theories are if I would have gotten my thyroid checked sooner and fixed through medication, maybe things would look different. Who knows. I only share my experience so you question your doctors and advocate. Always see an endocrinologist for thyroid care fyi. Actually always see the specific Dr for your specific ailments. I’d also consider seeing a gynecologist that specializes in female hormones/menopausal symptoms. Early ovarian failure happens in celiacs so I read  on the celiac disease center in Chicago website. 
×
×
  • Create New...