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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      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
      12

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

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

    5. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

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

    Helen1984
    Newest Member
    Helen1984
    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

    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
×
×
  • 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.