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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

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

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • 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.