Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Help...


cynicaltomorrow

Recommended Posts

cynicaltomorrow Contributor

My GI gave me a blood test for gluten antibodies in early June. I came back "highly positive" in one area.. I believe it was Igg. My biopsy was negative and he diagnosed me with gluten sensitive enteropathy. I went to an allergist a few weeks ago to test for other food allergies, because I'm still getting sick. My blood tests for food allergies all came back negative.. including wheat. The nurse there said that I may have a sensitivity to sulfites. I don't even know what is going on right now. I feel like I'm at the beginning again. How can 2 blood tests say completely different things? I am so frustrated. Any sugggestions... comments.. etc.?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Celiac blood tests and wheat allergy tests are completely different things. The vast majority of people with celiac are not allergic to wheat. I'm not but I certainly have celiac.

richard

Link to comment
Share on other sites
byuiemily Newbie

lovegrov, i'm a bit confused. You say that the majority of people with celiac are not allergic to wheat, but wheat (amongst other grains) has gluten in it, which is what makes us "Celiac", therefore, we would not be able to have wheat..or "allergic" to wheat.

Link to comment
Share on other sites
gf4life Enthusiast

Our immune systems are a bit complicated. We have 5 different kinds of immunoglobulins (abbreviated as Ig). There are IgA, IgD, IgE, IgG and IgM.

The celiac tests are done on IgA (most specific to testing celiac) and IgG.

Allergy tests are done on IgE. So it is not uncommon to be Celiac, but not wheat allergic, or wheat allergic and not Celiac. And some people are both.

Either way it sounds like you should avoid gluten since you came back as gluten sensitive. Have you tried the diet? And if you have, do you feel better off gluten?

God bless,

Mariann

Link to comment
Share on other sites
cynicaltomorrow Contributor

I felt better when I first went off gluten.. but now I feel the same as I did before.

Link to comment
Share on other sites
tarnalberry Community Regular

It's true that most people - and probably most celiacs - are not allergic to wheat. That's because an allergy is defined as being an IgE mediated response to a substance (and the subsequent histamine related symptoms). Celiac disease/gluten-intolerance is not IgE mediated, but rather through IgA and IgG. Some people are both, of course, but _technically_ calling celiac an allergy is medically incorrect. That's why you can test positive for an allergy or an intolerance and not the other one. It just matters what method your body is using to react to the protein that determines which label you get. (As an aside, wheat allergies usually mean you don't have to avoid barley or rye, and particularly oats. While _rare_ cases of _very serious_ wheat allergy could lead to anaphylaxis (this isn't common among any allergy, and is even less so among wheat - peanut and shellfish are the bigger worry on this one), in general, a wheat allergy does not cause internal damage to the body, where celiac disease certainly can.

Link to comment
Share on other sites
gf4life Enthusiast

Part of the testing problem is that even most doctors don't realise that allergies and intolerances are different and they just order the food allergy tests and tell you that you don't have a problem with wheat.

I have a friend who took her daughter in to be tested for gluten intolerance and the doctor not realising the difference ordered food allergy tests instead. It ends up her daughter is highly allergic to milk (not a surprise) and eggs (totally a surprise), and is also allergic to wheat (and possibly gluten intolerant, since her main symptoms are GI related). She still doesn't know for sure if she is gluten intolerant, but is keeping her gluten and dairy free anyhow, since wheat is the primary source of gluten and she has to avoid that anyhow.

I'm just saying that if it seems confusing to you, that's not surprising since it isn't clear to most doctors either. And there doesn't appear to be any mainstream tests that are accurate for testing for food intolerances either. If there are, doctors don't know how to order them! :rolleyes:

God bless,

Mariann

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



FreyaUSA Contributor
Part of the testing problem is that even most doctors don't realise that allergies and intolerances are different and they just order the food allergy tests and tell you that you don't have a problem with wheat.

This is exactly what happened to me. I was sent to an allergist and I didn't even react to the control! Lol! (Does that mean I have no IgE at all? :rolleyes:) The thing that astounded me was that when I spoke with the allergist about being intolerant (this was all new to me too,) she was clueless (she acted like she'd never even heard the term before.) When I said what my symptoms were, she said she doesn't know anything about that, I would have to see a gastro.

Marian (gf4life), thank you for that explanation about the Ig's! With all the confusing, new things I've been reading trying to understand all this, your explanation made it click.

Link to comment
Share on other sites
lovegrov Collaborator

Emily,

What Marianne and Tiffany said about Igg, Iga, and Ige.

There is also a difference in reactions for some people. Also, some people with wheat allergy can have a low-gluten wheat like spelt, and of course they can eat rye and barley.

richard

Link to comment
Share on other sites
cynicaltomorrow Contributor

So, should I go back and get the skin test? Do those detect intolerances?

Link to comment
Share on other sites
tarnalberry Community Regular

No, skin tests are for allergies (IgE mediated responses). And even then they aren't that great at picking up food allergies. Blood tests for allergie are better, but even an allergist will do an elimination diet and a food challenge (in office). (Though, in this case, the challenge is looking for immediate symptoms - which is what you get with IgE mediated responses. IgG mediated responses give you longer term responses - they don't start for anywhere from two hours to a day after you ingest the food.) Different blood tests are used to determine intolerances, though for things other than gluten-intolerance, this is still somewhat controversial in the scientific community.

Link to comment
Share on other sites
cynicaltomorrow Contributor

Thanks for all of your help, guys. I just feel so lost. I know gluten makes me sick.. so obviously I stay gluten-free. But, I still get nauseated quite frequently when I eat. Before my doctor diagnosed me as being gluten sensitive.. he told me I had chronic gastritis. But, he never mentioned it again after that one time. He diagnosed me with the gastritis from analyzing a biopsy of my stomach lining. Could that be it? I would think if that was it.. my stomach wouldn't have hurt SO much more whenever I took Nexium. I also guess that I'm lactose intolerant.. even though there was no visible damage to my villi. But, I still get sick even when I eat gluten and lactose-free. I've also considered IBS.. but I'm not sure. That's what I thought I had to begin with.

Link to comment
Share on other sites
tarnalberry Community Regular

You may want to look for other food intolerances. There could be other foods causing the nausea. (When you say you eat lactose-free, does that mean you are completely dairy free? Milk has two potentially offending components: lactose and casein. You may have a problem with the casein. (It gives me symptoms similar - but not identical - to getting gluten.) )

Link to comment
Share on other sites
cynicaltomorrow Contributor

How can I tell when I have a food intolerance?

Link to comment
Share on other sites
tarnalberry Community Regular

Some people find keeping a food and symptom diary enough. Some people remove the food from their diet for a number of days and then reintroduce it. Some people - like me - do a relatively strict elimination diet, removing all high-potential foods and then challenging their system with a questionable one, one at a time. Some people do a water fast and then challenge with the questionable foods, one at a time. Some people do IgG blood testing (by York, for example), but some doctors may hesitate to accept this as the scientific value of these methods is still under discussion. (I won't quite label it controversial, but there isn't community agreement on it's value.)

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,506
    • Most Online (within 30 mins)
      7,748

    NanaA
    Newest Member
    NanaA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • McNish
      If you're ever in the Peoria IL area - Queen of Squash is 100% gluten-free.   Pekin (just outside Peoria) Whiskey Taco is 90% gluten-free.  The owner's mom is Celiac so they get it!   Just let your server know.   https://thequeenofsquash.com/ https://whiskey-taco.com/
    • trents
      Do you have online access to your celiac panel test results such that you could post them? tTG-IGG is kind of a secondary test. A weak positive in that one could indicate celiac disease but since it isn't as specific a marker as the tTG-IGA it is not real convincing. You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. It is 10x more common than celiac disease and shares many of the same symptoms. Some experts believe it can be a precursor to celiac disease. The antidote for both is the same: total avoidance of gluten.
    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
×
×
  • Create New...