Follow-Up With The Doctor

[Cheryl-C]

So today I had my post-blood-test follow-up with the doctor. My blood test apparently came back fine, as in negative for celiac - she did mention the high rate of false negatives.

However, the more we talked, the more the doctor is thinking I may have a GRAIN allergy. What?! Apparently eating gluten-free has kept me (mostly) out of harm's way, but my symptoms are more indicative of a grain allergy than strictly gluten.

Anyone else been told this? I'm supposed to be going to see an allergist in a couple of weeks and have NO IDEA what to expect.

Help!

[K-Dawg]

Hey Cheryl C

My blood work came back negative as well. I was working with a liver specialist as a failing liver is what took me to the doctor in the first place. After the negative celiac blood work, she moved on to other tests to try to figure out what was going on with my liver. Before doing a liver biopsy, which is the last thing done after everything is ruled out, she indicated it would make sense to do an endoscopy of the small intestine due to the false negatives with celiac disease and she wanted to rule out any other issues. My villi were so damaged, that she guesses I'd had celiac disease for a decade. YIKES. And was I ever glad to get the diagnosis cuz I just wanted to start feeling better. I stopped gluten right away.

So I know from personal experience that the negative blood work may not mean a darn thing. The only way to find out now, though, would be if you did a gluten challenge and if you are feeling better after going G'Free, then why bother? You know that the symptoms resolved themselves when you began to avoid gluten. I'm not sure that the medical stamp of approval is necessary.

I know nothing of grain allergies or your symptoms so I can't even guess if your symptoms speak more of celiac disease or an allegy to grain?!

So today I had my post-blood-test follow-up with the doctor. My blood test apparently came back fine, as in negative for celiac - she did mention the high rate of false negatives.

However, the more we talked, the more the doctor is thinking I may have a GRAIN allergy. What?! Apparently eating gluten-free has kept me (mostly) out of harm's way, but my symptoms are more indicative of a grain allergy than strictly gluten.

Anyone else been told this? I'm supposed to be going to see an allergist in a couple of weeks and have NO IDEA what to expect.

Help!

[cassP]

i just went to my GI today- and he also is completely aware of common false negatives- im glad to see these docs are becoming more educated

to the first poster- im not sure what your doc was exactly communicating-> but i can tell you- that many gluten intolerant people ALSO feel better off most grains. some are totally fine, but others like me feel better with no grains.

i dont know anything about "The Specific Carbohydrate Diet", but others on here mention it a lot.

[ravenwoodglass]

Were you gluten free or gluten light before the blood test? That would cause a false negative.

[Cheryl-C]

The only way to find out now, though, would be if you did a gluten challenge and if you are feeling better after going G'Free, then why bother? You know that the symptoms resolved themselves when you began to avoid gluten. I'm not sure that the medical stamp of approval is necessary.

I know nothing of grain allergies or your symptoms so I can't even guess if your symptoms speak more of celiac disease or an allegy to grain?!

K-Dawg, you're exactly right, and that is what my doctor said as well. If eating gluten-free has sorted out my stomach issues (yes) then clearly there was some kind of issue with digestion. The smart thing to do here will be to stay away from it.

As far as the symptoms go, when I told her that besides the digestion issues, I get sudden, severe ear pain, her ears perked up. She said that ear pain (and also sinus pain, which I do get as well) indicates an "allergy" as opposed to an inability to digest.

So essentially, eating gluten-free may be keeping me out of harm's way (and yes, it is nice to have a stomach that works better now) but we still have to get to the bottom of the ear thing.

[Cheryl-C]

i just went to my GI today- and he also is completely aware of common false negatives- im glad to see these docs are becoming more educated

to the first poster- im not sure what your doc was exactly communicating-> but i can tell you- that many gluten intolerant people ALSO feel better off most grains. some are totally fine, but others like me feel better with no grains.

i dont know anything about "The Specific Carbohydrate Diet", but others on here mention it a lot.

So you have trouble with some grains too? I have to say, before she said it it'd never occurred to me that this might be the problem. I've read of "wheat allergy" and "corn allergy" before but in my mind, I always assumed that mean anaphylactic or hives or something. I never associated the ear pain with an allergy. The body is so bizarre.

I'll look around for some specific carbohydrate diet threads, thanks for the heads-up! (I might also pm you with an extra question or too lol)

[Cheryl-C]

Were you gluten free or gluten light before the blood test? That would cause a false negative.

Good point - by that time I think I was going light with the gluten, or was gluten-free but always sick with still eating the wrong things. You're right, that could have been the issue. I don't want to retake the test though if that means having to go back to eating gluten. (Would there be a point to doing that?)

My dr seemed satisfied that not eating gluten is saving my stomach, so I think at least for now, that part has been resolved. Once I get to the bottom of this ear thing, hopefully I'll have a better idea overall of what I can and can't eat.

[cassP]

So you have trouble with some grains too? I have to say, before she said it it'd never occurred to me that this might be the problem. I've read of "wheat allergy" and "corn allergy" before but in my mind, I always assumed that mean anaphylactic or hives or something. I never associated the ear pain with an allergy. The body is so bizarre.

I'll look around for some specific carbohydrate diet threads, thanks for the heads-up! (I might also pm you with an extra question or too lol)

oops, forgot to address the ear question in my pm.

i dont have ear reactions to any of my diet or disease issues- BUT- when i was 3- i DID have that procedure where they have to put tubes in your ears... in addition to a tonislectomy & adenoidectomy.... im now suspecting that they immune flair ups may have been the 1st signs of Celiac. but anyways- your ear pain could easily be caused by your sinus flairups- those canals are so connected!

[Cheryl-C]

oops, forgot to address the ear question in my pm.

i dont have ear reactions to any of my diet or disease issues- BUT- when i was 3- i DID have that procedure where they have to put tubes in your ears... in addition to a tonislectomy & adenoidectomy.... im now suspecting that they immune flair ups may have been the 1st signs of Celiac. but anyways- your ear pain could easily be caused by your sinus flairups- those canals are so connected!

Interesting ... I never had tubes in my ears, but whenever I get a cold it always hits hardest in my sinuses, as if that part of my body/immune system is already weaker than everything else.

Hmm.

I swear, some days it feels like two steps forward, one step back.

[Looking for answers]

Also keep in mind, in order to get an accurate "all;ergy" testing, you also need to keep eating the thing(s) you are allergic too, otherwise antibodies will not show up.

[Skylark]

Usually fast reactions like your ear pain are allergy. I have a bit of gluten allergy now too. Last time I got a tiny but of Guinness in a sauce I didn't know about, along with the usual nausea I had a tingle in my mouth, asthma, and woke up sneezing and with a runny nose the next morning.