Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Genetic Testing Portland Oregon

Benedime

Recommended Posts

Benedime Newbie
Benedime
Posted

Hi everyone I just recently went gluten free and it has changed my life I am convinced I have celiacs diseases because I have 20 plus symptoms that have all gone away since being gluten free. My blood test came back negative and my doctor said it may have been because I couldn't eat enough gluten. Then she suggested doing the biopsy of the small intestine but said I would have to eat extreme amounts of gluten for six weeks!! There is just no way I would be so sick.i have heard about the genetic testing and I think that is the best and most accurate way I just dont know where to get it. I'm in the Portland Oregon area and didn't know if someone could direct me to the right place. I mainly want to know because of the tax deductible they now have for people with celiacs disease. Thanks so much do reading :)

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

Hi everyone I just recently went gluten free and it has changed my life I am convinced I have celiacs diseases because I have 20 plus symptoms that have all gone away since being gluten free. My blood test came back negative and my doctor said it may have been because I couldn't eat enough gluten. Then she suggested doing the biopsy of the small intestine but said I would have to eat extreme amounts of gluten for six weeks!! There is just no way I would be so sick.i have heard about the genetic testing and I think that is the best and most accurate way I just dont know where to get it. I'm in the Portland Oregon area and didn't know if someone could direct me to the right place. I mainly want to know because of the tax deductible they now have for people with celiacs disease. Thanks so much do reading :)

the genetic testing will not give you a diagnosis. Not everyone with the genes developes celiac.

Benedime Newbie
Benedime
Posted
  • Author

the genetic testing will not give you a diagnosis. Not everyone with the genes developes celiac.

I understand that but I have been researching a lot on what the best and most accurate test would be and so far the blood work and biopsy are not that accurate. I hear the genetic testing is way accurate and if you have as many symptoms as I do that have gone away with a gluten free diet and the test shows you have it in your genes then you have a way more significant chance of having Celiacs. I also thought if the genetic test shows it in the genes then I would be a lot closer to getting diagnosed without trying to kill myself for six months eating gluten and getting a biopsy that will more then likely not be accurate. again if anyone knows of a place to get genetic testing in the Portland area or online that would be fantastic thanks so much for all the great info.

kareng Grand Master
kareng
Posted

Open Original Shared Link

"Who can order the gene test? Does

it have to go to a special laboratory?

How much does it cost?

Genetic testing is available through most doctors. At-home test kits are also available from Kimball Genetics and Prometheus Laboratories. Pricing for the test varies: at- home kits cost approximately $400; when done through a blood draw the test can cost as much as $2,000. More and more insurance companies are covering the cost for the test, especially if the individual be- ing tested has a risk factor for the disease."

MitziG Enthusiast
MitziG
Posted

Genetic testing can only say if you have celiac genes. It will get you no closer to a dx.

As for the tax deduction- well that is a joke. There are several threads here about it.

As I found out after saving a years worth of receipts for me and my 2 celiac kids, + having several thousand in medical bills- it wasn't enough to qualify for itemizing medical expenses. (Our family of 4 had over $8000 in med expenses, including gluten-free food) we would have needed 13000.00 to qualify. Which is ok, cuz it turns out you can only deduct the difference between reg and gluten-free food, and you have to provide PROOF of the cost of every comparable reg food item. And...apparently, claiming the deduction pretty much guarantees you an audit.

So if that is your motivation- forget about it.

As for gene testing...even if it identifies celiac genes...you may not have celiac. Or, it may say you DON'T have the genes, but you cud still have celiac. They just identify the most ccommon genes associated with it is all.

And, the reality is, you may not have celiac. Most on this board do not. But as many as 1 in 14 people are gluten intolerant, to varying degrees. The symptoms are identical to celiac. The difference is that the only test for gluten intolerance is that if you eat gluten, you react negatively to it. When you stop eeating it, you get better.

I get that you want the "validity" of a celiac dx- most here do. The reality however, is that few get it.

What matters is that you take charge of your health. If gluten makes you sick- please stop eating it. You don't need a doctors permission to be well.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,655
    • Most Online (within 30 mins)
      7,748
    mcarrigan1958
    Newest Member
    mcarrigan1958
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Help Interpreting My Lab Results? (updated)

      By trents · Posted

      Cutting out major sources of gluten in one's diet is pretty easy. It's the hidden sources where it shows up in products you would never expect to find wheat in (like soy sauce and Campbell's tomato soup, most canned soups, many pork n' bean products), medications, supplements, oral hygiene products, etc. that are the things that trip you up. And then there is eating out in restaurants where you order something that should be gluten free but it's cooked along with things that have wheat. Eating out is the biggest threat to eating gluten free. Achieving a truly gluten free diet involves a real learning curve. It concerns me that you seem to want to ease into this gradually. That just sounds too casual to me and screams of not taking this seriously. The longer you put off achieving a truly gluten-free life style, the longer your body will continue to be harmed. In your first post in your thread you seemed concerned about harm that already might have been done. Now you seem to be singing a different tune. This may be helpful to you:   
    • kopiq
      almost a year in recovery - so many questions about to give up

      By kopiq · Posted

      thank you so much. this makes so much sense. I just started taking vitamin b complex today (https://www.amazon.ca/Absorption-Methylated-Methylcobalamin-Flush-Free-Igennus/dp/B01787EPEE?rdc=1) and will continue with it to see how I feel. I also have 1000mg vit d pills but i do not absorb fats and when i first tired them i got a severe migraine for three days. Once i no longer taste fats or foods linger in mouth and throat I will start taking the vitamin d pills.   thanks again, really appreciate the info, I have a drs appointment in a few weeks and will look into a dietician.    
    • knitty kitty
      Burning sensation when I wake up

      By knitty kitty · Posted

      Hi, @Zuma888, Hashimoto's commonly occurs with Celiac Disease.  Those HLA genes code for other autoimmune diseases along with Celiac.  Hashimoto's and Celiac overlap.  People with Hashimoto's produce anti gluten antibodies, so a gluten free diet is definitely a must.  It may be safe to assume you've got Celiac Disease as well.   People with Hashimoto's often have deficiencies in Vitamin C and Thiamine.  Vitamin deficiencies are common in Celiac Disease.  A deficiency in Thiamine can manifest as Gastrointestinal Beriberi with digestive upsets and changes in bowel habits.   Your burning sensation and extreme fatigue for days after working out may be due to a lack of Thiamine and B vitamins.  If you don't have sufficient Thiamine, lactic acid can build up in muscles causing that burning sensation.  Anybody remember Jane Fonda's workouts?  Her catch phrase was "Feel the burn" meaning work out so hard, lactic acid builds up causing the burning sensation.  Thiamine and the B vitamins are needed to clear that lactic acid and repair muscle damage. Supplementing with a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, and magnesium would be beneficial to help you feel better.  Blood tests for vitamin deficiencies are inaccurate.  Take Thiamine and B vitamins, then look for health improvements.  If not needed or absorbed, excess B vitamins are easily excreted in urine.  
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thanks so much.  🙏  I see they have them on Amazon. I'm all over it.  I'll let you know how it goes. 
    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, So glad you checked your multivitamin! I like Life Extension brand.  Their BioActive Complete B Complex has active forms of the B vitamins.  Note that one serving is two capsules, so you can take one capsule at each of two meals, boosting opportunity for absorption.   Life Extension also makes Benfotiamine (100 mg).  Take one at each of two meals in addition to the B Complex.  Don't take thiamine and B vitamins close to bedtime, you may be too energized to sleep.   I like Life Extension's Neuro Mag, a form of magnesium that can get into the brain easily, which helps immensely with improving headaches and muscle tension in the neck.   I'm so glad you're enjoying the forum!  
×
×
  • Create New...