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

Please Help

I Love Food

Recommended Posts

I Love Food Newbie
I Love Food
Posted

Please help. been suffering for years.

 

Got a copy of my lab reports from 2008

 

AGA IGA positive 12.6 reference < 12.0 U/ML

AGA IGG positive 21.6 reference < 12.0 U/ML

TTG (endomysial) negative 1.3 reference < 10.0 U/ML

 

Biopsy was negative. Seems like there were only 2 samples taken. 

 

Symptoms started out as mostly GI (diahrea, every single day, bloating, have to run to washroom and would have shaking and cold sweats).

 

I've also had the tiny itchy liquid filled blisters on my hands - but they only appear (or at least in great number and extremely itchy) in August/September.

 

Went gluten and dairy free this past November for 30 days. felt amazing. Starting eating normal again by Christmas time.

 

New symptoms within the last 8 months - sinus pain daily, sore throat daily, joint pain (wrists, knees ankles) EXTREME fatigue (likes it's a real struggle to make it through work) I could sleep all he time, brain fog (almost like split second blackouts, like I forget for a second where I am or what I wanted to do) forgetfull, easily irritated especially with banging noises, a spot on my face next to my right ear went numb one afternoon (I could dig my fingernail in and feel nothing) trouble loosing weight despite eating well, heartburn

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome! Time to get retested by a celiac-savvy GI! Here are the tests (actually any medical doctor can order a complete celiac panel which is critical in your case since your old TTG results were negative and the old AGA tests were used). I tested positive to only the DGP IGA and my TTG tests were negative yet biopsies revealed moderate to severe damage (many sample were taken).

I Love Food Newbie
I Love Food
Posted
  • Author

Thanks so much for your reply. so AGA aren't used anymore? What is the complete celiac panel? 

cyclinglady Grand Master
cyclinglady
Posted

Oops! Sorry! Here is the list of celiac disease tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I meant to say that my TTG rests were negative but the DGP IGA test was positive. My biopsies revealed severe damage. Sounds like your GI did not take enough samples as damage can be patchy and the small intestine is the size of a tennis court -- seriously!

Keep eating gluten until all testing is complete!

Welcome to the forum and let us know how it goes!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

      If you haven't noticed a difference yet, bump up your Thiamax. Add in another Thiamax with breakfast and lunch. Increase the NeuroMag as well. You can add in another Benfotiamine, too. Thiamine is safe and nontoxic even in high doses. Taking more is fine. I had to bump mine up several times when first starting. It's a matter of finding what...
    3. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance nor a dairy allergy. Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy....
    4. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    5. Scott Adams
      0

      Can Your Gut Microbiome Predict Celiac Disease Years in Advance?

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,100
    • Most Online (within 30 mins)
      7,748
    Pat Relyea
    Newest Member
    Pat Relyea
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      New issue

      By Jmartes71 · Posted

      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      Insomnia help

      By trents · Posted

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.