Celiac Bloodwork Neg. But Symptomatic

[tamaramalave]

My daughter has been suffering from severe stomach pains (sharp and debilitating), wrinkled fingertips, fatigue, and dark circles/bags under her eyes. She had allergy testing which came back negative for everything (even Mango which makes her blood pressure drop so quickly that she must carry an epi-pen).

She went on the gluten-free diet and every symptom, except maybe the fatigue, went away within three weeks. She went to a GI and he diagnosed her with IB. He told her to go back on wheat and he prescribed medication. Within 3 days her symptoms came back.

She was a very colicky baby, had a family history of stomach problems, and overused wheat products. Instead of gaining the freshman 15 in college, she lost weight even though she increased her refined carbs.

My questions are:

Can these allergy tests be wrong? I mean I know my daughter is allergic to Mango as she had contact rashes as a baby which got progressively worse (thank Jamba Juice).

Is there a similar disease to celiac that causes the wrinkled fingertips, fatigue, and stomach pain?

Thanks

[KaitiUSA]

Celiac is commonly misdiagnosed for celiac.

Also, celiac is NOT an allergy so an allergy test will not pick up on it. She would need a full celiac panel.

At this point if her symptoms improved then I would keep her on the diet. Sounds like she is either celiac or gluten intolerant(my guess-celiac)

I would find a doctor well versed in celiac because it sounds like the one you have not is one of the many doctors who are dumb about celiac.

And yes, allergy testing can be wrong. DO NOT listen to tests over your body. Your body will just not steer you wrong.

Obviously, if being gluten free takes care of the symptoms then there was a problem with gluten.

[emeraldskies]

You can get her stool tested for gluten sensitivity at EnteroLab: Open Original Shared Link. If she has been on the gluten-free diet for too long, she may get a false negative. Others here may be able to tell you how long you can be on the diet and still get a correct diagnosis (I don't know). There is also a genetic test EnteroLab offers that can detect genes responsible for gluten sensitivity. If the tests come back positive, you definitely should find a new doctor that will support this diagnosis. If they are all negative (and it's not a false negative), try researching other gastrointestinal or autoimmune disorders to see if you can find help for your daughter. You could try the colitis test at EnteroLab as well. It does sound like gluten's the problem, though.

[tarnalberry]

My questions are: 

Can these allergy tests be wrong?  I mean I know my daughter is allergic to Mango as she had contact rashes as a baby which got progressively worse (thank Jamba Juice). 

<{POST_SNAPBACK}>

Allergy tests for food allergies are notoriously unreliable, and any good allergist should tell you that. The body's reaction is the most valuable indicator of what you can't tolerate. But, as Kaiti mentioned, celiac is NOT an allergy. (An allergy is an immune reaction mediated by a class of antibodies called IgE, celiac is an intolerance involving an immune reacting mediated by a class of antibodies called IgG.) Separate blood testing for celiac-specific antibodies are required to investigate a celiac diagnosis.

[Merika]

What sort of allergy tests were run? I think the ELISA blood tests are more accurate than the RAST tests or skin tests. I don't remember mango being tested on my food allergy test.....I'm pretty sure it wasn't.

As Tiffany says, celiac is not an allergy and won't show up there. It has it's very own blood panel test. It is possible to not show an allergy to wheat, but test positive for celiac (that's what mine did).

If your dd does better eating gluten-free, then she is better eating gluten-free. Period. If she's currently eating wheat, take her back to the doc and get a celiac panel run. Because you can't get an accurate test later if you've been off gluten.

It's also possible she's not celiac, but has a gluten sensitivity, which means she should still be off gluten. IBS is one of the most over-used diagnoses around. Kudos to you for investigating further!

Best wishes,

Merika

[hollybeth]

What sort of allergy tests were run? I think the ELISA blood tests are more accurate than the RAST tests or skin tests. I don't remember mango being tested on my food allergy test.....I'm pretty sure it wasn't.

As Tiffany says, celiac is not an allergy and won't show up there. It has it's very own blood panel test. It is possible to not show an allergy to wheat, but test positive for celiac (that's what mine did).

If your dd does better eating gluten-free, then she is better eating gluten-free. Period. If she's currently eating wheat, take her back to the doc and get a celiac panel run. Because you can't get an accurate test later if you've been off gluten.

It's also possible she's not celiac, but has a gluten sensitivity, which means she should still be off gluten. IBS is one of the most over-used diagnoses around. Kudos to you for investigating further!

Best wishes,

Merika

<{POST_SNAPBACK}>

Yes, I agree--if she feels better off the gluten--have her stay off the gluten. I am going to be tested for celiac disease later this week, but no matter what the results are, I am staying gluten-free, because I feel like an entirely new person gluten-free. The doctors don't always have all of the answers--no doubt over time they will come up with better tests for celiac disease and celiac sensitivities than they have now.