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
buildtothesky
Posted

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
gfpaperdoll
Posted

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
fedora
Posted

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
Lisa16
Posted

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
buildtothesky
Posted
  • Author

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.

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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.