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

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

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

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

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

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

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
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

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.

  • 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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,866
    • Most Online (within 30 mins)
      7,748

    Jan Exum
    Newest Member
    Jan Exum
    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

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.