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Gluten Allergy Only - Not Celiac? Anyone?

Metoo

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Metoo Enthusiast
Metoo
Posted

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
heidi g.
Posted

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
Celtic Queen
Posted
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
Metoo
Posted
  • Author

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
sariesue
Posted

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
Metoo
Posted
  • Author

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
sariesue
Posted

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
lemontree1
Posted

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
Metoo
Posted
  • Author

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
sariesue
Posted

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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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
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