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

Next Step After Positive Enterolab Test


cbu2424

Recommended Posts

cbu2424 Newbie

Hi everyone.I went gluten free back in May after noticing on the days that I ate very few carbs I felt better.I was being plagued for years with sinus headaches and was dx a few years ago after birth of my third child with GERD. At time of GERD diagnosis i was in bad shape .I couldnt even drink water without feeling acid immediately after having her. I was getting very bad anxiety attacks and extreme fatigue. A few months after she was born many of the extreme symptoms went down to a more lower end level, the last symptom before they became tolerable was a swelling of all my fingers that would start every night and continue into the morning. I had to have my wedding ring resized and could not even bend my fingers to hold shampoo in the shower. Mysteriously at month 4 that went away and i was left feeling not great but not exteme case of sickness. So life went on ,busy with three kids. Back in the spring I decided as part of my eating habits to cut some carbs and eat more protein. So I began skpping bread at lunch and replacing it was lettuce,etc. All sudden I had more energy and better mood.  Initially i thought it was the carbs but then started reading that the type of carbs I was eating may have been more important. So I cut all the gluten as a test. Within one week I started feeling a lot better and after a couple weeks noticed huge difference. Before I cut the gluten I was getting very very tired after meals, I could not stop yawning and by mid afternoon almost felt like I would actually fall asleep at any moment, almost a drugged type feeling, not just tired but felt like I would talk kind of slurry, and felt sick. So I was drinking a lot of coffee to try and help. In reading about gluten some other symptoms I have had which may tie in are the gerd, as well as dental enamel issues, I had fillings done and they come off, dentist commented if I am chewing on battery acid or something,.,I also get bloated stomach but not since cutting gluten. I am in a 100 percent better mood, I dont think I realized how down I was feeling til the gluten was removed. 
Anyway bc I dropped the gluten allergist said  bloodtest wouldn't work so I did the entero lab testing. 

Results showed positive for two genes, one gene they said "is associated with celiacs" , other gene associated with "gluten sensitive" . Because I have both,report said I am in high risk catagory for more extreme gluten reacction?

Stool sample was positive at a number of 25 (over 10 is positive) ,this is despite me pulling gluten from my diet for three months. I have three kids. Two are very tiny, 5th percentile for weight, 20th percentile for height. I am wondering if I have celiacs (I am small too, 100lbs, 5'3" and that they do (my son is 90percentile and huge , as is my husband), or if the girls are small just bc I am petite.

What would my next step be? Thanks.Cheryl


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

If you think you need to test your kids for Celiac, don't take them off of gluten until a medical doctor has blood tested and maybe endoscoped them. Enterolabs " stool tests" are not medically accepted. You might have a hard time getting doctor's notes for school, camps, etc for the kids with those tests.

As an adult, if you feel better off gluten, you can eat gluten free in most circumstances without an actual diagnosis.

nvsmom Community Regular

i agree with Karen, I would try to get blood tests for the kids before going gluten-free. try to have both the tTG tests and the DGP tests done (DGP tests are better for detecting celiac disease in kids).

 

welcome to the board.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    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

    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
    • Scott Adams
      I am only wondering why you would need to cut out rice? I've never heard of rice being any issue in those with DH.
×
×
  • 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.