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

Newbie Needs Help With Lab Results


buildtothesky

Recommended Posts

buildtothesky Newbie

Hi all, wanted to introduce myself. I have been lurking for about a few months and after reading all the positive feedback on Enterolab decided to test for celiac. First just a little history, I am a white 40/M of European decent. I developed DH at 9 years of age and suffered horrible outbreaks till I was diagnosed through biopsy at 15. Started Dapsone and rash subsided. I haven't had the intestinal symptoms as bad as some but have bloating and gas constantly. Suffered chronic constipation most of my life to the point of developing hemrhoids. I have now been gluten free for 1 month and do feel amazingly better (especially the joint pain). I just got my Enterolab results today and would love to here any input on my values and what exactly the gene markers mean. I have 2 children and one has been diagnosed with ADHD since he was 4 and he is now 13. I am getting him tested this week as well as my 17 year old daughter. Now to my present symptoms starting with the worst:

Lightheadedness/dizziness (this is my worst symptom)

Arthritis (came on suddenly the last 3 years)

Depression

Anxiety

high blood pressure

nerve pain/ tingling/ numbness in arms, legs, hands, feet

sore tongue

Sinusitis

post nasal drip

Constipation

sensitive teeth

poor vision (especially last 2 years)

sleep apnea

low body temp

My test results are:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 33 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 29 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 40 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

Anyone have similar findings that could comment? Does this mean my children are at risk for Celiac and or gluten intolerance? thanks in advance for any imput.


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

hello & welcome, with those genes "they" call it gluten intolerance - those of us with those genes know that it is no different than celiac - except that yes, you will more than likely have more neurological problems, hence your depression & other food intolerances, your problem with dairy. They are learning more about those genes all the time... (proving what we all know already)

I will just tell you to not try soy either. Some of us are checking into glutamates & soy is also high as are the gluten grains and dairy & peas... & also no goat cheese etc, sorry to have to dash all your cheese hopes in one swoop !

Gluten free will get rid of most all your symptoms, start taking B12 & the depression will go away - gluten-free plus B12 = a very happy person.

your son most likely has your DQ1 gene - famous for ADHD, depression, dyslexia, migrains on & on...

get your blood work done & check all your vitamin & mineral levels. A lot of us have found that we are low in D also...

be sure & post back & let us know which genes the kids have - you could have some double DQ1 kids - probably your son with ADHD. two copies of the same gene = trouble, but of course the sooner you catch the problem & go gluten-free the better you will be - oh, I can already tell you that your son should also be dairy & soy free also, & take some B12...

smart of you to get tested with Enterolab. So often men are hesitant to change their diet. & what a good roll model you will be for your kids... What kind of symptoms does your wife have ? :lol::lol::lol: kidding in a way - but...

fedora Enthusiast

Have you never been on a gluten free diet? Did they not recommend that when you were diagnosed with DH? Glad you are feeling better.

You definately have gluten and casein intolerance. You also have antibodies against your own tissue present. You have no malabsorption of fat according to their test.

You have neither of the two main celiac genes, but it is more complicated than that.

HLA-DQB1 Molecular analysis, Allele 1 0301 also known as DQ7 is half of a pair that can make a celiac gene when put together. You do not have the other half(DQ2.2). so you do have half a celiac gene. There was a study in Europe where 2% of the celiacs had DQ7 and not either of the 2 main celiac genes.

You have biopsy confirmed DH. That means you have celiac. I think your children are at risk. That does not meant they will get it though.

Lisa16 Collaborator

Hi and welcome to the club!

There is a thread on the DQ6 and DQ7 genes in this section of the forum. If you search for it or scroll down a few pages you will see it. People ahve psoted their symptoms there.

I have those genes too, as well as many of the same problems (except for the constipation part-- I ran the other way.) I am also diagnosed as celiac. I have also been sick since I was a kid.

I am glad you are feeling better on the diet. I am in month six and getting stronger every day. Hang in there!

I would definitely get my kids tested too, and I would educate them about what to watch for as they may develop symptoms later. There is something about knowing you have the genes that makes it more real to people. After getting my gene results, my parents went gluten free and are doing much better (especially my dad).

Take care!

buildtothesky Newbie

Thanks for the reply gfpaperdoll,fedora and Lisa16. I appreciate the imput and I will let you know when I get the gene results on my children. Oh and gfpaperdoll my wifes "symptoms" include being absolutely tired of hearing all my symptoms over the years,,I mean with the anxiety and depression that resulted from it I would complain constantly and was beginning to think I was just making myself sick. I never connected it with a gluten diet until the last few months I am truly grateful to have met others with likewise symptoms.

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. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

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

    • Total Members
      133,138
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.