Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Allergy test confusion, need help


JamieAR

Recommended Posts

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? 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748

    Brianman
    Newest Member
    Brianman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...