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Gluten Allergy Only - Not Celiac? Anyone?


Metoo

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Metoo Enthusiast

I just verbally got my results, and I do NOT have celiac. I plan to post my results here in a couple of days make sure they were interpreted right.

But that means that I do infact have a gluten allergy then from my previous test.

Does anyone else here have a gluten allergy?

I am guessing this means I need to avoid gluten, but perhaps that I do not need to be as super strict as if I had celiac. I am hoping she wrote on my results. I have been super strict the last 3 days.


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heidi g. Contributor

ehhh i would believe avoiding gluten is being as strict as a celiac anyways. Some affected with celiac can't tolerate dairy and soy and corn because of the damaged intestine. But everyone is different. I myself am in the midst of finding out if its just an allergy or celiac. blood test came back negative and biopsy showed something so I'm just eating gluten free to make sure. I don't feel 100% at all but id rather eat better and feel half bad then not be careful and feel like i swallowed hot lava again.

Celtic Queen Explorer
I just verbally got my results, and I do NOT have celiac. I plan to post my results here in a couple of days make sure they were interpreted right.

But that means that I do infact have a gluten allergy then from my previous test.

Does anyone else here have a gluten allergy?

I am guessing this means I need to avoid gluten, but perhaps that I do not need to be as super strict as if I had celiac. I am hoping she wrote on my results. I have been super strict the last 3 days.

Was your first test a blood test and the second a biopsy? Did you have positive on one and negative on the other? I ask because that is what happened to me.

I would suggest googling "Non-Celiac Gluten Intolerance." There's a lot of research about people who don't show signs of Celiac in their biopsy but still have problems with gluten. Dr. Stephen Wagnen, an IBS specialist, thinks that Celiac disease may just be one part of what is a larger gluten intolerance issue.

I hate to be a Debbie Downer, but I think you need to stay on a strict gluten-free diet to feel better.

Metoo Enthusiast

Was your first test a blood test and the second a biopsy? Did you have positive on one and negative on the other? I ask because that is what happened to me.

I would suggest googling "Non-Celiac Gluten Intolerance." There's a lot of research about people who don't show signs of Celiac in their biopsy but still have problems with gluten. Dr. Stephen Wagnen, an IBS specialist, thinks that Celiac disease may just be one part of what is a larger gluten intolerance issue.

I hate to be a Debbie Downer, but I think you need to stay on a strict gluten-free diet to feel better.

My first blood test was for a gluten allergy, IgE. It was positive. My second blood test was for Celiac, which was negative. I haven't, nor really want a biopsy, I have a clotting disorder, so I am nervous about it.

I do know my mom carries the Celiac gene or one of them, but was negative for Celiac also. I do not believe she has ever been tested for an allergy though.

sariesue Explorer

According to my blood test(possibly incomplete) and my biopsy(only 2 biopsies in my small intestine), I don't have celiac. I also don't have an allergy to all gluten just to barley. But I do have a definite intolerance to wheat. Since I don't like rye I am unsure if I have issues with that since I haven't had any in recent memory. So, I am gluten free to be on the safe side. According to my allergist there is no gluten allergy test, you have to test for each allergen separately. May I ask if you were allergy tested for wheat, barley, and rye? or Has some new test come out that my allergist was not familiar with.

Metoo Enthusiast

According to my blood test(possibly incomplete) and my biopsy(only 2 biopsies in my small intestine), I don't have celiac. I also don't have an allergy to all gluten just to barley. But I do have a definite intolerance to wheat. Since I don't like rye I am unsure if I have issues with that since I haven't had any in recent memory. So, I am gluten free to be on the safe side. According to my allergist there is no gluten allergy test, you have to test for each allergen separately. May I ask if you were allergy tested for wheat, barley, and rye? or Has some new test come out that my allergist was not familiar with.

I was tested for IgE to gluten only, through blood testing. I think I am going to considering going to an allergist and getting tested for more than just gluten, maybe a gammit of food allergies now. I would just like a more definitive answer on what I should and shouldn't be doing.

My understanding also is that for allergy/IgE testing I don't actually have to continue consuming gluten to test positive for it, that they actually swirl the material with serum or something and thats how the determine the results, so hopefully I can stay gluten-free for awhile and see if this helps.

sariesue Explorer

I was tested for IgE to gluten only, through blood testing. I think I am going to considering going to an allergist and getting tested for more than just gluten, maybe a gammit of food allergies now. I would just like a more definitive answer on what I should and shouldn't be doing.

My understanding also is that for allergy/IgE testing I don't actually have to continue consuming gluten to test positive for it, that they actually swirl the material with serum or something and thats how the determine the results, so hopefully I can stay gluten-free for awhile and see if this helps.

Possibly not. For my after the blood tests for allergies came skin tests. During skin tests they used both lab prepared allergens and a water and real allergen mix. They dip this pointy thing in the solution then prick your skin with it. Then you get to wait and see if you develop a bump. The next step after that is an oral food challenge where you eat small amounts of the offending food then wait for a reaction. I haven't had that done.


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lemontree1 Rookie

Why are you worried about getting a confirmation for Celiac Disease when you know you are allergic to gluten? The treatment for either is the same: stay away from gluten. It seems you are splitting hairs in your attempts for both diagnoses.

Metoo Enthusiast

Why are you worried about getting a confirmation for Celiac Disease when you know you are allergic to gluten? The treatment for either is the same: stay away from gluten. It seems you are splitting hairs in your attempts for both diagnoses.

Because I have young children, I need to know whether its an allergy or celiac to determine how they are treated and tested.

sariesue Explorer

Because I have young children, I need to know whether its an allergy or celiac to determine how they are treated and tested.

Regardless if you have an allergy or celiac or both, wouldn't your children's treatment be the same? You would still need to introduce gluten and watch for reactions. Especially for celiac since you have to be eating gluten for some time before testing would be valid. And since food allergies are not passed down to children. Although food allergies can run in families, they aren't usually the same triggers. So just because you have an allergy to gluten doesn't mean your children will, they could be allergic to other foods or have no food allergies, just like how you could have celiac and they do not. And if they do develop a reaction to gluten wouldn't you test for both allergy type reactions and celiac type reactions at the same time? It is very easy to have an additional blood test run when you are getting blood work orders.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • 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
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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