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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.