Just A Wheat Allergy?

[splash]

My doctors diagnosed me with celiac even though my blood IAg and DNA tests were both negative. My symptoms all my life have been so numerous, and were so drastically improved once gluten free, that it just made sense. But is it possible that I just have a wheat allergy, and (more importantly!) that maybe I can have some good old barley based beer?

I'm afraid to test it out since I get so sick for days with GI problems, heart racing, brain fog, and skin problems when I get mistakenly glutened. And I know from this site that the DNA test in the US can't rule celiac out 100%. Is it possible though that an allergy could cause those things and that I don't have celiac? Will my GP or GI drs be able to test me, or should I see an allergist? I haven't tested myself with barley or rye since I went gluten free last summer.

No offense to Redbridge, but it's not quite the same... I'd love a big glass of Guinness stout!!

[RiceGuy]

Well, as you yourself have said, the tests are unreliable. Only one sure way to know, so it's up to you. Sorry, I don't know what else to suggest.

[tarnalberry]

there's not much you can do other than test it dietarily. an allergist will look for IgE allergies, not IgG intolerances. you may have a negative IgA, and still have celiac, particularly if you're IgA deficient (not uncommon in celiacs), and the DNA tests don't cover 100% of celiac cases).

your symptoms sound pretty classic celiac, and not very much like an allergy. they *might* be wheat intolerance based, but they sound more celiac. if you want to test it, though, I'd suggest going out, getting some barley groats, cooking them up for dinner, and having a nice big bowl, and seeing how you feel. you may heartily regret it for weeks, or you may get to drink guiness again.

[splash]

Thanks for the replies. I guess even if I did have an allergy, that wouldn't rule celiac out - I might have both. Maybe I'm just going through stage #24 of celiac diagnosis: Denial due to severe temptation to drink Guinness! For those in the earlier stages, this apparently occurs about 8 months after you first give up gluten

Maybe I should just try having a few sips of beer. Tomorrow is a holiday, after all...

[dbmamaz]

I tested negative for celiac, but tested allergic at the regular allergist to wheat, barley and malt . . .no wonder the gluten-free diet helped so much

You could try eating barley . . .or yeah, just try the beer lol.

[tarnalberry]

there are a number of other gluten free beers to try (none are cheap :/). perhaps one of them - while never your old beloved - will become newly appreciated?

[splash]

Well, last night I had a half a bottle of beer. As good as it tasted, I was nervous and couldn't bring myself to drink the whole thing. But... nothing happened. If that had been a cracker I would have been running to the bathroom within minutes, my heart would be pounding and I'd be waking up feeling terrible. But it seems like I'm fine! I am pretty much in disbelief. Maybe the reaction to barley is different that wheat somehow and I'll have symptoms later?

But this would explain all my negative tests if I just have a wheat allergy. Why didn't any of my doctors think of this??

[Fiddle-Faddle]

Actually, it depends some on how long you have been gluten-free. Your gut may have healed since last summer, and then you might not react to gluten as you once did. For some of us, it takes a while to do damage.

When was the last time you had a reaction to accidental gluten?

Not trying to burst your bubble, just don't want to see you damage yourself unnecessarily.

You might try a cracker and see if you have that instantaneous reaction--but if you don't, I wouldn't think that you're cured, just that your gut has healed and is not (yet) reacting.

If you do react to the cracker, then you might be right, and maybe it is a wheat allergy, not celiac, but gee, that does seem awfully unlikely (though still possible).

I'm not a beer drinker, but I'd start trying all the sorghum based beers before rocking the boat.

[splash]

I do see your point. I don't want to do any long term damage either. A couple of weeks ago I ate at a restaurant in DC called Utopia, and the waitress just plain didn't understand what I was talking about when I asked about gluten. I had a portabello pesto dish that caused my insides to explode within about 30 minutes. I felt like a skeleton for two days and it took a few more for me to have a meal without my stomach growling back at me. And that's probably from a portion of wheat flour that was a tiny fraction of the amount of barley in the beer I had last night.

I have joked that I'm like a gluten-detecting robot, because if the tiniest amount creeps into my meal, even from using an iron skillet once used for pancakes but thoroughly washed, I will feel it. I really don't want to test out the cracker. So this beer thing is quite weird. Has anyone else experienced different reactions to different kinds of gluten?

I have tried quite a few sorghum beers - there are some Belgian sorghums that are decent. The truth is that I'm a bit of a microbrew afficionado, so this has taken a pastime from me, not to mention that some of the places I frequest with my friends have enormous choices of beer, none of which are gluten free, and the only wine offered tastes like vinegar. I've been drinking cider mostly, even though the alcohol content gets me tipsy a little too quickly! And sharing pitchers is out.

I can live without beer if I have to, I'm not trying to design my own disease, I just want to get to the bottom of this!

[ravenwoodglass]

  splash said:

I do see your point. I don't want to do any long term damage either. A couple of weeks ago I ate at a restaurant in DC called Utopia, and the waitress just plain didn't understand what I was talking about when I asked about gluten. I had a portabello pesto dish that caused my insides to explode within about 30 minutes. I felt like a skeleton for two days and it took a few more for me to have a meal without my stomach growling back at me. And that's probably from a portion of wheat flour that was a tiny fraction of the amount of barley in the beer I had last night.

I have joked that I'm like a gluten-detecting robot, because if the tiniest amount creeps into my meal, even from using an iron skillet once used for pancakes but thoroughly washed, I will feel it. I really don't want to test out the cracker. So this beer thing is quite weird. Has anyone else experienced different reactions to different kinds of gluten?

I have tried quite a few sorghum beers - there are some Belgian sorghums that are decent. The truth is that I'm a bit of a microbrew afficionado, so this has taken a pastime from me, not to mention that some of the places I frequest with my friends have enormous choices of beer, none of which are gluten free, and the only wine offered tastes like vinegar. I've been drinking cider mostly, even though the alcohol content gets me tipsy a little too quickly! And sharing pitchers is out.

I can live without beer if I have to, I'm not trying to design my own disease, I just want to get to the bottom of this!

The gluten response is often delayed. What I would reccommend is drinking a guiness at least once a day for a week. If you last a week. For many it can take a few days before the reaction is seen. The fact that you are so apprehensive to a full gluten challenge is quite telling, IMHO.

[HAK1031]

I think different types of gluten can affect people differently. Surprisingly wheat is not so bad for me. If I have that accidentally, I might be in the bathroom for a little while but I'll be better in less than 24 hours. If I have barley, however, I'll be out of sorts for a week. The sickest I ever remember being involved a lunch of soup with barley and a lunch with rye bread

But I agree with everyone else- no reaction (for now) doesn't mean you don't have celiac

[splash]

As much as I would love to have Guinness for a week, it looks like it didn't take more than half a beer after all. I haven't had any skin problems since going gluten free, but last night I started to get a bunch of blisters on my hands and I'm not entirely GI-comfy right now even though that didn't come on all at once like it would with wheat. What I had the other night was an Avery IPA, which has no wheat in it, just barley and hops. Man it tasted good. But, alas, I don't think I'll try it again. Funny that the symptoms for different kinds of gluten are so different!