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

Test Say Positive/No Symptoms ?


beksmom

Recommended Posts

beksmom Apprentice

My 13 yr old sons labs came back low positive but he has no symptoms should he still go on a gluten diet??


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

My 13 yr old sons labs came back low positive but he has no symptoms should he still go on a gluten diet??

I think you probably already know the answer to this one. A positive is a positive. No current symptoms he is aware of does not mean that gluten is not harming him. Many people have no intestinal symptoms but suddenly develop perhiperal neuropathy, migraines, brain fog, or worse. I think he should be gluten free. Others may disagree.

tarnalberry Community Regular

Yes, he needs to go on a gluten free diet.

Particularly during adolescence, symptoms diminish greatly, but there is still damage being done to the intestines, which results in incomplete digestion of the food he's eating.

Many, many people with celiac are "silent celiacs", displaying no symptoms that they identify with the condition.

You may be surprised, however, by small things that didn't seem like symptoms, which are positively impacted by him going gluten free, however.

Yup Apprentice

Yes, he needs to go on a gluten free diet.

Particularly during adolescence, symptoms diminish greatly, but there is still damage being done to the intestines, which results in incomplete digestion of the food he's eating.

Many, many people with celiac are "silent celiacs", displaying no symptoms that they identify with the condition.

You may be surprised, however, by small things that didn't seem like symptoms, which are positively impacted by him going gluten free, however.

I didn't have symptoms for years, and I found out last March that I'm a silent celiac. The only problems I had were not being able to get pregnant and staying pregnant (has a preemie girl at 29 weeks who is doing great). Plus, I started having problems with my muscles, anemia, lactose intolerance and sleep at about the age of 30. Please put him on gluten-free diet. I know it is a complete pain, but his quality of life will be SO much better. I just saw a stat from Kinninick...they saw 100 newly diagnosed celiacs last month alone in their store in Edmonton, Alberta. Crazy!

DougE Rookie

I was diagnosed quite by accident. My doctor decided to test my iron, noticed I was slightly anemic and decided to go for the TTG. Turns out I was a Celiac all my life (diagnosed at age 49). Would never have known except for my doctor's insightful hypothesis. In Canada, positive blood tests are followed up with an endoscopy. Has this been suggested?

  • 3 weeks later...
Switch2GF Rookie

My 13 yr old sons labs came back low positive but he has no symptoms should he still go on a gluten diet??

A couple weeks later... I'll reiterate, YES

I'd suggest an endoscopy also, just to be 100% sure.

I didn't show ANY symptoms when I was 19, but was tested because it runs in my family and my sister was just diagnosed. It took a few years, but my symptoms finally showed. In the mean time, my body was not healthy and I was promoting cancer. I'd get him adjusted to the gluten free diet now rather than waiting until he is in bad shape and has symptoms.

beksmom Apprentice

A couple weeks later... I'll reiterate, YES

I'd suggest an endoscopy also, just to be 100% sure.

I didn't show ANY symptoms when I was 19, but was tested because it runs in my family and my sister was just diagnosed. It took a few years, but my symptoms finally showed. In the mean time, my body was not healthy and I was promoting cancer. I'd get him adjusted to the gluten free diet now rather than waiting until he is in bad shape and has symptoms.


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



Celiac.com Sponsor (A8-M):



beksmom Apprentice

I want to thank you for you response. It gives me confidence that i am doing the right thing . My son has an appointment this Friday with a surgeon for consultation for the biopsies . Do you have any advice as to what i should say if he tries to say its not necessary at this time. I really feel i want to be on the safe side and not allow him to get to the stage that i"m at now. It has been a month so far on the strict diet and i'm still unable to gain a pound, they are going to re check my weight in two months, and my vitamin D is still depleated.

TrillumHunter Enthusiast

If you are a diagnosed celiac, he ABSOLUTELY should stay on the diet! I can't believe any physician would be foolish enough to say otherwise. Labs establish positive numbers for a reason. To feed him gluten would be to poison him. :blink:

I have good friend whose family was tested after their diabetic son came up positive. She thought it would be her, but it was her husband who had NO complaints.

AKcollegestudent Apprentice

I want to thank you for you response. It gives me confidence that i am doing the right thing . My son has an appointment this Friday with a surgeon for consultation for the biopsies . Do you have any advice as to what i should say if he tries to say its not necessary at this time. I really feel i want to be on the safe side and not allow him to get to the stage that i"m at now. It has been a month so far on the strict diet and i'm still unable to gain a pound, they are going to re check my weight in two months, and my vitamin D is still depleated.

Whoa. I'm certain you've already heard this on this board, but you have to be eating gluten when you do the biopsy. Your biopsies aren't going to be accurate if you've both been a month gluten free. The reason why I don't have a biopsy result to present to my school's dining people is that I can't add gluten back for the 90 days that it'll take to get an accurate biopsy result.

OBXMom Explorer

My daughter was in the same boat - tested after little brother was diagnosed, and found to have an autoimmune response to gluten (and casein) but no symptoms. The difference was that she had seen her little brother suffer for years, and did not need any further proof. She said, "If I can avoid all of that, I want to", refused biopsies but immediately went gluten free. Maybe if you could find a celiac kid who has had serious issues and use him or her as an example of how bad it can be it would help your son. (Google some pictures of celiac kids teeth problems if you need a visual aid.)

Also, since celiac can cause so many problems, it is possible that your son has some issue caused by gluten even if he doesn't have GI problems. My daughter had bad acne which improved after removing gluten. Others have headaches, allergies, trouble sleeping, brain fog, the list goes on. It is possible there is something that your son experiences that you could point out may improve. Hope the appointment goes well.

  • 3 weeks later...
gintare519 Newbie

My 13 yr old sons labs came back low positive but he has no symptoms should he still go on a gluten diet??

START RIGHT NOW!!!

Even if he has no symptoms. I actually had to the opposite.

I used to eat gluten and bread all the time. The doctors would test me, nothing would come up. But I would have severe abdominal pain. Now, 5 years later, after eating so much more gluten, my body is completely down. I am getting more health problems since I did not find out that I am a celiac earlier. I am constantly nauseous and always tired. I am very young as well. So that should say a lot. Since he did test positive, get him into the regimen ASAP.

  • 1 month later...
Kurzemiete Explorer

START RIGHT NOW!!!

Even if he has no symptoms. I actually had to the opposite.

I used to eat gluten and bread all the time. The doctors would test me, nothing would come up. But I would have severe abdominal pain. Now, 5 years later, after eating so much more gluten, my body is completely down. I am getting more health problems since I did not find out that I am a celiac earlier. I am constantly nauseous and always tired. I am very young as well. So that should say a lot. Since he did test positive, get him into the regimen ASAP.

I am sorry for your ordeal and hope it will improve on the celiac diet.

This really makes me think hard on getting my daughter on a gluten-free diet ASAP! I have fibromyalgia, epstein barr syndrome and 2X tested inconclusive for lyme. When i eat more proteins and good fats i tend to do better. I have wheat issues, i react after eating what in an allergic type ways hives, brain fog/spacey feeling, runny nose my eyes ache and run, i get phlegm other stuff also. More tinnitus, more nerve problems etc etc. Also i have hair thinning issues and i am a female who is not yet 40! I have done a celiac test and it did not come up positive but that was about 1.5 years ago, got another one done abt 3 weeks ago have to go to dx to see results..

Anywhow but re my daughter who is almost 14 she has had severe bouts of stomach pains for years. It was more sparse but lately it happens on a weekly basis, to varying degrees of severity. She is eating wheat almost daily. I want to get her to do the blood sample test but i know it may not be conclusive the only real way is to avoid all gluten and see how she fares! She has bm daily they are ok but roundish not in one piece at all. At times the pains are not so terrible but sometimes it's literally like food poisoning, she sits on the toilet has diahhrea, major stomach pain to the point of perspiring...Sometimes i can trace it to wheat sometimes to artificial food colors or flavors with i try hard to not buy but it happens when she is outside the house.

Skylark Collaborator

There is a state that celiac researchers are starting to call pre-celiac, where people might have some positive celiac bloodwork results, but a negative or Marsh I bopsy. When these people are followed and they continue to eat gluten, some of them convert to having a strongly positive biopsy and much higher blood markers. If they discontinue gluten, they often feel healthier. Removing gluten also removes the risk for a more severe form of celiac, lymphoma, and lessens the chance to develop other autoimmunities.

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. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    3. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,255
    • Most Online (within 30 mins)
      7,748

    BeccaLynn
    Newest Member
    BeccaLynn
    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

    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
×
×
  • 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.