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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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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

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    • Peace lily
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      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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