Jump to content

  • 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
JamieAR
Posted

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
psawyer
Posted

"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
kareng
Posted

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
ravenwoodglass
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.