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

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
      132,134
    • Most Online (within 30 mins)
      7,748
    Driver
    Newest Member
    Driver
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
×
×
  • 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.