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

Non Celiac/gluten Intolerant

Guest Kalynn

By Guest Kalynn
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

Guest Kalynn
Guest Kalynn
Posted

Can anyone tell me what tests would be done to determine only an intolerance to gluten? My blood tests came back negative for Celiac, but I've been gluten free since October. I know people think I'm crazy, but if I eat things with gluten in them, it tears up my stomach for a while. I've gained few of my 20 pounds back (lost unintentionally) and am feeling better now than I have in almost a year. I would, however, like to know if it is a gluten intolerance.

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

Celiac.com Sponsor (A8-M):


Mango04 Enthusiast
Mango04
Posted

It looks like you have your answer already. If you notice positive results when you eliminate gluten from your diet, you should not eat gluten (and I gaurantee you nobody here thinks your crazy when you say gluten tears up your stomach for a while :lol: ) I believe Enterolab is an option though if you really feel the need for some sort of test result, but you don't need an official diagnosis to choose a gluten-free diet :)

Guest Kalynn
Guest Kalynn
Posted
It looks like you have your answer already. If you notice positive results when you eliminate gluten from your diet, you should not eat gluten (and I gaurantee you nobody here thinks your crazy when you say gluten tears up your stomach for a while :lol: ) I believe Enterolab is an option though if you really feel the need for some sort of test result, but you don't need an official diagnosis to choose a gluten-free diet :)

Will the Enterolab results be accuarate after being gluten-free?

Mango04 Enthusiast
Mango04
Posted

They say if you use Enterolab testing there's no need to reintroduce gluten into you diet

www.enterolab.com

:)

Rachel--24 Collaborator
Rachel--24
Posted

Yes, you can be off gluten for several months and still test with Enterolab. I was off gluten 4 months prior to my test and it came back positive.

slpinsd Contributor
slpinsd
Posted

Kalynn:

I also had only mildly postive bloodwork, only IgG. For 8 years, my stomach is torn up too after I eat something like pizza or pasta. What else could it be? Have you had food IgG testing done? It could be that type of reaction, or to wheat. But I agree, if you have seen positive results from the diet, keep on it. I also ordered the Enterolab testing for peice of mind, and I am currently gluten-free. The testing also includes a genetic test if you get the whole package. Enterolab says their stool testing is more sensitive and it shows up in the stool first. Also, there is always chance for a false negative with the blood testing.

I'm dealing with weight loss issues, as well. I have a history of several times of unintended weight loss (10-20 lbs at a time- 25 over the past 8 yrs), and since I went gluten-free though, the weight loss keeps going. Hang in there.

Also, Meredith, did you have positive AGA IgG or IgA? Those are indicative of gluten sensitivity. The TtG is more specific for Celiac, but you could still have Celiac and test negative for this.

Rachel- was your bloodwork negative for all 3, or just TtG?

Rachel--24 Collaborator
Rachel--24
Posted
Rachel- was your bloodwork negative for all 3, or just TtG?

I didn't have an IgG test. I was tested for anti-gliadin IgA and tTG IgA.

I've had IgG food testing done which showed nothing and recently had some other unrelated bloodwork done. After those results my doctor told me I'm a low-immune responder. My IgG is too low compared to most people. Maybe this is why my IgG food sensitivity test came back with nothing significant...I dont know. I also dont know if this affects my IgA as well. I was never tested for IgA deficiency.

My Enterolab results were positive but the numbers were fairly low....totally out of proportion with my malabsorption score which was close to being severe. I did the egg, yeast and casein tests with Enterolab as well and came back normal for those....although I cant eat them. My doctor said I'm unable to test positive due to my low-immune response. If this is true I wonder what the actual #'s would have been regarding my gluten testing if I had a higher immune reponse. I think I should get the IgA deficiency test just so I'll know for sure.

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

Celiac.com Sponsor (A8-M):


CMCM Rising Star
CMCM
Posted
Can anyone tell me what tests would be done to determine only an intolerance to gluten? My blood tests came back negative for Celiac, but I've been gluten free since October. I know people think I'm crazy, but if I eat things with gluten in them, it tears up my stomach for a while. I've gained few of my 20 pounds back (lost unintentionally) and am feeling better now than I have in almost a year. I would, however, like to know if it is a gluten intolerance.

A blood test is not necessarily the final word on whether or not you have celiac. I would really suggest the full panel offered by Enterolab. Thru that test, I was able to find out that I have TWO genes....a celiac one and one for gluten sensitivity. I found out I was casein sensitive as well. With Enterolab, they say you can accurately test when you haven't had gluten for up to a year. When I got tested, I had been off gluten for about 7 weeks or so. If you don't want to do the full panel (which includes the gene test and the casein test) for $349, you could just do the gene test for $149, and that would tell you about the gluten sensitivity. If you are having identifiable symptoms,however, you might be well served by the full panel test. I always thought I was lactose intolerant (well, perhaps I could be that too), but I was surprised to find out about the casein intolerance. I wouldn't have known that without the test. According to Enterolab, if you are casein intolerant you also have to avoid dairy because casein can cause intestinal damage the same as gluten can.

A number of years ago I got a blood test for celiac (because my mom has it), and while I don't really know if my doctor ordered the proper tests, they did come back "negative." Yet my symptoms persisted, and it wasn't until I did the Enterolab test that I got the full picture.

Mango04 Enthusiast
Mango04
Posted
And Meredith- I'm a fellow San Diegan too!

HI! I was thinking of starting a thread to look for other San Diegans on here. It's good to know there's atleast one other person from sd :)

Kalynn - Good luck w/ the testing. Hope you find answers you're looking for. I've ordered the gene test from Enterolab myself and am still waiting for the results.

Archived

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

Go to topic listing

  • 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. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    4. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    5. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,345
    • Most Online (within 30 mins)
      7,748
    Scottweath
    Newest Member
    Scottweath
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • 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.