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

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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • 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.