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Confused...


Babygirl6915

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Babygirl6915 Explorer

Ok, so the more I read on here, the more I see how many tests & such everyone on here has had to confirm their celiac. All I had was a blood test that said I have a Class II allergy to wheat. The doctor told me that I had celiac & sent me on my way with 2 pages basically saying don't eat wheat ever again. :rolleyes: Now, I also don't have near the symptoms that some people on here have but all the bloating, swelling, diahrrea, puffy face, & terrible stomach pain I do have. Is there something else I should be doing to confirm this (test wise)? Or is that all it takes... Also, should I be seeing an GI or an allergist @ all?


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Lisa Mentor

Jessica:

You had a blood test that was positive for Class II Wheat allergy. I am not familiar with Class II. Maybe someone else knows what that means.

Do you know the type of test that you doctor ran?

loco-ladi Contributor

As with everything else it depends on your body, how long you've lived with it not knowing and how much damage it has done....

Myself, I am not an official diagnosis, the doctor wouldn't run any tests for it and since it runs in my family and I had the correct symptoms, heck it wont kill me so why not try it see if it helps, well it did help even just 2 months into it I can see the difference, still have a few issues but they get better daily.

aikiducky Apprentice

Celiac is not an allergy but a different kind of process in the body. If you were diagnosed with an allergy test you don't know whether you have celiac or not. The way to officially diagnose celiac is with a few different blood tests called the celiac panel and a biopsy of the small intestine. That said, I would take a wheat allergy seriously. An allergic reaction can be very quick and very serious! :blink: So you shouldn't eat wheat anyway. The question is however, whether or not you also should avoid barley, rye and oats?

Pauliina

Babygirl6915 Explorer

So should I go & see an allergist about this? The not eating gluten has really helped alot but if its just an allergy shouldn't there be a shot or something to make it go away like grass or pollen? :huh:

Michi8 Contributor
So should I go & see an allergist about this? The not eating gluten has really helped alot but if its just an allergy shouldn't there be a shot or something to make it go away like grass or pollen? :huh:

There really is no magic shot to make any allergies go away. Some people have some success with allergy shots for airborne allergens, but with food allergies it's a different story. Best way to treat food allergies is to eliminate the offending food from your diet.

That said, by all means go to an allergist to confirm whether or not this is a true allergy and whether you have other allergies to be concerned about. You could also visit a GI to confirm whether this is truly a case of celiac. At the very least, go back to your doctor to confirm whether he ordered the full celiac panel or not...and if not, then have that panel done too.

Michelle

Babygirl6915 Explorer

Ok, so I spoke to an allergist finally & basically having a wheat allergy is the same as celiac in that I should not eat any gluten period. He said that just because I am not allergic to it doesn't mean I won't get a response from is b/c they are all so similar. I am supposed to make an appointment to go in to see him but all he is going to do is encourage me to get allergy shots for my other allergies (dust mites, cockroaches, 2 kinds of grass, mold). Anyways, so I guess I am still on the permanent gluten-free diet. <_< But it really has been working still! I feel TONS better & I already had my first run in with an accidental glutening! :blink: Sour cream & chicken enchiladas @ Blue Goose are NOT gluten-free despite me dumb waitress's assurances. At first she thought I said glue-free. That should have been a clue right there <_< but oh well. You live & you learn right?


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Marty13 Newbie
Ok, so the more I read on here, the more I see how many tests & such everyone on here has had to confirm their celiac. All I had was a blood test that said I have a Class II allergy to wheat. The doctor told me that I had celiac & sent me on my way with 2 pages basically saying don't eat wheat ever again. :rolleyes: Now, I also don't have near the symptoms that some people on here have but all the bloating, swelling, diahrrea, puffy face, & terrible stomach pain I do have. Is there something else I should be doing to confirm this (test wise)? Or is that all it takes... Also, should I be seeing an GI or an allergist @ all?

you should see a celiac specialist because they will be able to give you a endoscopy which is when the doctors stick a tude down your throat(when you are asleep) and they take pictures of your intestines, they also take biopsies. at beth isreal hospital in boston massachusetts they have a celiac center for adults and they are really good. i do not go there because i am only 13 i go to Childrens hospital and they have a really great place. i think that the celiac specialists are really talented and they are all really nice so if you can because i don't know where you live, i really recommend these places.

Frogster Newbie

Dear Confused,

So am I.

My husband was dx with Crohns and Celiac in Jan. by biopsy. He has been gluten-free since that time.

He was transported by ambulance last Fri. to hospital and stayed until yesterday (Wed). This was a Crohns attack. His G.I. doc came in yesterday morning and released him, wants to see him in 2 weeks. talk about new meds...but he wants him to go back to gluten until his appointment and do some blood work at that time. Can anyone tell me if this is normal although he had the positive biopsy? I am afraid he will get sick going back on gluten.

Thank you for any comments.

Frogster

Lisa Mentor
Dear Confused,

So am I.

My husband was dx with Crohns and Celiac in Jan. by biopsy. He has been gluten-free since that time.

He was transported by ambulance last Fri. to hospital and stayed until yesterday (Wed). This was a Crohns attack. His G.I. doc came in yesterday morning and released him, wants to see him in 2 weeks. talk about new meds...but he wants him to go back to gluten until his appointment and do some blood work at that time. Can anyone tell me if this is normal although he had the positive biopsy? I am afraid he will get sick going back on gluten.

Thank you for any comments.

Frogster

Going back on gluten makes no sense to me what so ever. With a positive biopsy for Celiac, he will get sick. Sorry that you have been having such troubles.

Frogster Newbie
Going back on gluten makes no sense to me what so ever. With a positive biopsy for Celiac, he will get sick. Sorry that you have been having such troubles.

Thank you for the comment and concern.

This is my second post.

I have been lurking awhile but have learned alot.

Thanks again.

mftnchn Explorer
Thank you for the comment and concern.

This is my second post.

I have been lurking awhile but have learned alot.

Thanks again.

Yes, I think before eating gluten again you should really press him for why this is necessary. Positive biopsy should be the gold standard that doesn't ever need re-doing for diagnosis. Sounds like someone who doesn't understand celiac.

This attack sounds awful and I hope he feels better soon.

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    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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