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Allergy test confusion, need help


JamieAR

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JamieAR Newbie

I have been gluten-free per doctor recommendation for 2 years now. Since I was still having stomach problems, I went in for allergy testing. It came back as:

Highly reactive: wheat, malt, yogurt

Moderately reactive: barley, cows milk, mushrooms, cottage cheese, mozzarella, kelp, sesame, ginger

Mildly reactive: green beans, chicken, sunflower, cheddar cheese, safflower

I have never gone through official celiac testing; I simply followed the doctor's orders to rid myself of gluten and see if it helped. It helped tremendously, but I still had stomach issues, unexplained fevers, and fatigue a couple of times a month. Thus the allergy testing.

My question is, is everything labeled "gluten free" also malt and barley free? Are there hidden places I should be cautious of sesame, ginger, or the other allergens? I'm willing to eliminate anything...I just want to feel better consistently.

Also, I have three kids who don't currently seem to have issues. How hereditary are these problems? 


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psawyer Proficient

"Gluten-Free" is a regulated term in Canada and the USA. It refers to wheat, rye, and barely content. 

It does not specifically refer to "malt" since, while most malt is from barley, other grains can be malted without resulting in gluten content. Your allergist is wrong if he says "malt" is an issue. Wheat is gluten; yoghurt is dairy; but "malt" is not specific. You may react to certain things when malted.  But it depends on what the malt is made from.

If it says "gluten-free" it does not contain wheat, barley or rye. Other top allergens are are listed in FALCPA, which came into effect in 2006.

kareng Grand Master

That is some odd allergy testing.  I don't get the separating the dairy?  Are you supposed to be allergic to the protein in dairy?  Then  it would be for all dairy.

 

like Peter said, "malt" isn't a thing to be allergic to.  Usually, foods with " malt" say  " barley malt".  Like a malted milk ball has barley malt.  But your "allergy test" should say an allergy to barley not malt.  

 

Sorry to say, I think you wasted your money on those " tests".  

ravenwoodglass Mentor

Welcome to the board. It is too bad your 'doctor' didn't test you for celiac before telling you to go gluten free.  Since he was neglectful in that respect chances are he didn't tell you all you need to do to keep yourself safe IF you have celiac.  Since you have children and celiac is hereditary you should consider going back to eating gluten and getting tested.  Chances are good that you are not as gluten free as you think you may be and that would be what causes you to still have periodic issues.  That is especially the case if you have other folks in your home that are still eating gluten.  It was very irresponsible of your doctor to simply tell you to go gluten free without testing and giving you the full info after diagnosis to keep you safe.  He virtually guarenteed that you will still have periodic issues so he could charge you for an 'allergy' test . As other posters mentioned the results of that allergy testing are very strange and IMHO should be ignored for now.  Please consider going back on gluten, a couple slices of bread a day should be enough, and get tested by a real MD in a couple months. Meanwhile do read the Newbie 101 thread so that you will know what you need to do to keep yourself safe if those tests come back positive. Also be very cautious with any herbals or supplements that 'doctor' may have prescribed.

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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
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