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

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

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

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

cyclinglady Grand Master

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.

  • 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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      7

      My only proof

    2. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    3. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

    4. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    5. - Kirita replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,288
    • Most Online (within 30 mins)
      7,748

    Greg R.
    Newest Member
    Greg R.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
    • Scatterbrain
      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
×
×
  • 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.