No barley allergy, yet celiac?

[PolyBlank]

Hello, 

I have tested positive for celiac, yet my allergy test results for barley were negative.  Is this possible, considering barley contains gluten?  Shouldn't my barley allergy test have come back positive?  I asked my doctor and he said I am allergic to the gluten in the barley, but common sense is telling me that I still should have shown an allergy to barley.  I just don't understand how I can be diagnosed as celiac yet apparently not be allergic to barley.  Any clarifications or information that could be offered would be greatly appreciated.  Thanks in advance.

[trents]

PolyBlank, welcome to the forum.

Celiac Disease is not an allergy. It is an autoimmune disease that expresses itself as inflammation of the lining of the small bowel lining when wheat, barley or rye is consumed and, for some celiacs, also oats. A person with Celiac Disease can often not be allergic to the gluten protein in those same grains. Conversely, a person can have an allergy to one or more of the gluten containing grains but not have Celiac Disease. 

I think you are not distinguishing between an allergic immune system response and an autoimmune response. The two involve the immune system in different ways.

[Scott Adams]

Also, you are correct that people with celiac disease cannot have barley, but as far as allergies go barley is not big as an allergen. The reason for this may be that, aside from its use in beer and some specialty breads, it isn't used as widely as wheat is. Wheat is in the list of top 8 allergens, while barley is a far less common allergy.

[PolyBlank]

Thanks for your responses, both of you.  The thing with me is, I pretty much have zero symptoms, and I love beer, so I am trying to justify being able to have a real beer once a month or something.  Since beer is made from barley and my test said I was not allergic to it, I was hoping I would be able to drink it.

[trents]

Just because you have no symptoms doesn't mean damage is not being done to your body, especially the small bowel. It is not uncommon for celiacs to be asymptomatic. And just because you are asymptomatic now doesn't mean you never will be.

By the way, what tests did your doctor use to arrive at a celiac disease diagnosis? I assume these were blood tests? And if you have no symptoms, why did the doc order celiac disease tests?

[Scott Adams]

1 hour ago, PolyBlank said:

Thanks for your responses, both of you.  The thing with me is, I pretty much have zero symptoms, and I love beer, so I am trying to justify being able to have a real beer once a month or something.  Since beer is made from barley and my test said I was not allergic to it, I was hoping I would be able to drink it.

Rather than real beer, consider a beer like "Omission" which uses AN-PEP enzymes to remove all gluten. Some celiacs avoid this because it is made using barley, but others including myself have been drinking it for years without issues. 

There is also "beer" made without any wheat or barley ingredients, which is your safest bet. You might find this article helpful:

 

[PolyBlank]

1 hour ago, trents said:

Just because you have no symptoms doesn't mean damage is not being done to your body, especially the small bowel. It is not uncommon for celiacs to be asymptomatic. And just because you are asymptomatic now doesn't mean you never will be.

By the way, what tests did your doctor use to arrive at a celiac disease diagnosis? I assume these were blood tests? And if you have no symptoms, why did the doc order celiac disease tests?

I was feeling bloated after eating, and also having some fatigue.  The doctor thought MAYBE I had a gluten allergy and said there was no way I was celiac but sent me for the blood test anyway.  Boom.  Celiac. 

[PolyBlank]

50 minutes ago, Scott Adams said:

Rather than real beer, consider a beer like "Omission" which uses AN-PEP enzymes to remove all gluten. Some celiacs avoid this because it is made using barley, but others including myself have been drinking it for years without issues. 

There is also "beer" made without any wheat or barley ingredients, which is your safest bet. You might find this article helpful:

 

This is awesome, thank you very much.  I tried some of the sorghum "beer" and I am not a fan at all.  I would love to try some of the gluten-removed beers, I didn't know they existed!  Thanks everyone!

[trents]

2 hours ago, PolyBlank said:

I was feeling bloated after eating, and also having some fatigue.  The doctor thought MAYBE I had a gluten allergy and said there was no way I was celiac but sent me for the blood test anyway.  Boom.  Celiac. 

So at least at some point your were indeed having symptoms. Are you saying you no longer have symptoms when you eat wheat\barley\rye products? This is confusing since you said in post #1 you have no symptoms.

I strongly suggest you take the next step of diagnosis/confirmation and ask for an endoscopy/biopsy.

[PolyBlank]

3 hours ago, trents said:

So at least at some point your were indeed having symptoms. Are you saying you no longer have symptoms when you eat wheat\barley\rye products? This is confusing since you said in post #1 you have no symptoms.

I strongly suggest you take the next step of diagnosis/confirmation and ask for an endoscopy/biopsy.

Sorry, I said I "pretty much" had zero symptoms, and maybe I should have worded that differently.  The only things I experienced were bloating and tiredness, and not in any major capacity.  I assume most of the north American population have felt bloated and tired a good amount in their lives, celiac or not.  I had gone completely off gluten for over a month, and for a few days just before my gluten/celiac test, in my ignorance I started introducing gluten into my diet to ensure something would be detected.  A few beers, some bread, really anything that I used to eat was back on the table.  I had no symptoms whatsoever, not even the bloating.  I had my blood taken a few days later and it came back positive.  I was floored.  I had heard and read that when people who are celiac ingest gluten, they are running to the bathroom with diarrhea, have extreme headaches and can be in pain for days.  I experience none of that, so I guess compared to those unfortunate souls, I "pretty much" have zero symptoms.  I do know now that some people have worse symptoms than others, I have been very fortunate thus far.

My doctor did not recommend getting the endoscopy/biopsy, as he said they are quite invasive and can be risky.  We figured I would just assume that I do in fact have celiac disease, and I will stay away from gluten as best I can.  I have gone a few months now with zero gluten (as far as I know) and haven't found it difficult adhering to that diet.  But now that the pumpkin beers are coming out....I am being TEMPTED to cheat a bit.  Just a bit