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

I Guess I'm Official. Just Got My Enterolab Results.

GeoffCJ

Recommended Posts

GeoffCJ Enthusiast
GeoffCJ
Posted

backstory -

Been having symptoms for 10-12 years. Mainly gastrointestinal in nature, cramping, bloating, gas, diarrhea, etc. Frequently needing to use the restroom soon after eating. This was variously diagnosed as Lactose Intolerance (not true, I went Lactose free for a long time, and it never helped) and Irritable Bowel Syndrome (generic Catchall phrase).

I also had fairly severe issues with my hands and feet going numb/tingling/"falling asleep". Frequent, painful, and occasionally made doing even simple things hard, like walking and typing. I also had bouts with insomnia.

After trying the south beach diet, I felt much better. I started the tests, and living gluten-lite, then trying to be Gluten Free.

Negative Blood Tests

Endoscopy showed clear Gastroenteritis, but not Celiacs (I'd been Gluten free for 5-6 weeks)

Dietary response was clearly positive. I feel much better, and have had less symptoms, but not perfect yet.

I have the Genes for both Celiac and non-celiac Gluten sensitivity.

Positive Antigliadin IgA

So I guess I'm as official as I'm going to get. Crap. There was a big part of me that wanted to be wrong. Wanted it to be something that could be cured, so I could eat normally sometime in the future. Crap. I haven't been finding the diet that bad at home, but hate not being able to eat out normally with my family and friends.

I'm bummed.

Geoff

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

Celiac.com Sponsor (A8-M):


Nancym Enthusiast
Nancym
Posted

Another way to look at it is that you now know what you have to do to feel healthy and keep your brain/bowels functioning well. That seems like a huge win to me versus going through life in pain and possibly causing yourself brain damage.

Viola 1 Rookie
Viola 1
Posted

At least you have an answer now and can deal with it.

I think most of us are bummed about not being able to go out with family and friends and just order "like normal people". :unsure:

I'm fortunate that we do have one cafe in the area where we can just say ... I want the #1 chinese gluten free please ... and leave it at that. We can also do that with fish & chips at that particular cafe, but it took several of us talking to the owner and he hired a Celiac person on his staff to help set up the kitchen.

I firmly believe that if enough of us continually went to a local cafe in our area and worked at it, there would be a lot more cafes that we could pop into. There is getting to be more of us all the time.

2boysmama Apprentice
2boysmama
Posted

Hi Geoff -

I know how you feel - I felt the same exact way after I had my son tested and found out that both my husband and I carry at least one GS gene each (we haven't been tested ourselves yet). I fought "giving in" to the diagnosis for a lonnnnnnnnnng time. I can honestly say though, I feel SO much better going gluten-free that it definitely, positively offsets the "inconvenience" of not being able to go out to eat "like normal people." Do I miss being able to do that sometimes ? Sure I do, but I'm enjoying feeling well so much more than I ever enjoyed eating out. You'll get there too. ;)

Slackermommy Rookie
Slackermommy
Posted

Well Geoff...I am glad you got the results, I know you were anxious to get them.

You know I was recently diagnosed, and I def. feel that the diagnosis is bittersweet. I think that is the best word for it.

Great to know. Great we don't need drugs. But completely stinks on special occasions. (I include going out to eat in that one.)

The thing Enterolab did for me? It gave me the proof I needed to completely adopt this lifestyle.

Good luck. It stinks. But it's great too.

Bittersweet.

Judyin Philly Enthusiast
Judyin Philly
Posted

what test did you do at EnteroLabs?

Where did you do the blood work..?

Did you have trouble with dairy or did they test that

Just sent mine in yesterday after 19 months gluten-free..

judy

GeoffCJ Enthusiast
GeoffCJ
Posted
  • Author
what test did you do at EnteroLabs?

Where did you do the blood work..?

Did you have trouble with dairy or did they test that

Just sent mine in yesterday after 19 months gluten-free..

judy

I got the package, The full panel, from enterolab. Gene Tests, etc, etc.

The blood test was done through the university health care system. The said I was not reacting to Casein, and I don't think I'm reacting to Casein/Dairy, though I'm not sure. I seem to do OK, but occasionally I'm still having issues.

Good luck with yours Judy!

Geoff

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

Celiac.com Sponsor (A8-M):


Judyin Philly Enthusiast
Judyin Philly
Posted

thanks so much for the note.

i'll keep you posted. i think i'm going to find daiRy and soy as i know i react..

the gluten isn't so bad for me ...it's the dairy i will SOOOOO MISS.. I LOVE MY (((WOOPS))) I DID LOVE MY CHEESE..GRRR.

JUDY

Archived

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

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


  • Member Statistics

    • Total Members
      132,206
    • Most Online (within 30 mins)
      7,748
    S.Craigwell
    Newest Member
    S.Craigwell
    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

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as 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/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.