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

  • 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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @Jmartes71, I understand your frustration and anger. I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone. My doctors did not recognize nutritional deficiencies. Doctors are trained in medical learning institutions that are funded by pharmaceutical companies...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in...
    3. marion wheaton
      - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    4. Dorothy O.
      - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Even though my brother almost died in his 40s because of coeliac disease, no one ever told family members that we should be tested. As a result, I was almost 70 years old when an orthopaedic doctor suggested that I be tested for coeliac disease. My count was greater than 250. I had loved my bread, baking, especially pies and was never sick, but did not absorb...
    5. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,405
    • Most Online (within 30 mins)
      7,748
    Kbradway
    Newest Member
    Kbradway
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
×
×
  • 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.