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

Is A Dna Test Worth While?


kthies2

Recommended Posts

kthies2 Apprentice

I have been off of gluten for some time but really want to know if I have celiac disease. I can't bare the thought of adding it back into my diet in the quantities suggested for a positive test. Can anyone tell me if the DNA testing is worth the money, effort, and help it lends? I wonder if it really tells you anything much. Sounds confusing from the other discussions I have read. Will it really help me in understanding if I may have Celiac Disease? What do you recommend I do? I am a 32 yr old female and I want to protect my body from the damage of gluten if needed but don't want to be misdiagnosing myself. Thoughts?

Much appreciate all the help!!!!!!


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



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

Are you talking about Enterolab? It's a tough call. It's expensive and then there are people on the board who have followed all the recommendations and not gotten better. I am new here but I went back and read lots and lots of posts and threads about it. I'm confused at this point.

There is controversy about the methods and I have my doubts. I haven't done it because I'm unsure and the cost is high. I feel like it has a celiac positive bent and I can't be sure if the results are skewed that way. I worry that everybody who get it done gets diagnosed with celiac, know what I mean?

It's such a personal decision. You have to decide whether you believe in those methods and you will accept the diagnosis as valid. I feel like since I have doubts at this point, whatever diagnosis I get, I will doubt so it's not worth the money to me. If I find more information later that relieves those doubts I will get it done.

There was a time that they thought the world was flat and all. There was a time when they thought there was no such thing as germs too. It may be that that type of testing is the cutting edge and in a few years it will be THE way to test. It certainly is a lot easier than biopsies and filling yourself with gluten to get an iffy blood test.

Why are you going on and off the diet? Did you feel better on the diet and did symptoms resolve? In the end, it's going to come down to that anyway. If going on gluten again to get a diagnosis will make you so ill that you can't bear the thought of it, then I think you have the answer. Who cares if it's celiac, gluten intolerance or whatever. You need the diet if gluten makes you sick.

kthies2 Apprentice

Hey thanks for the reply and suggestions. i went off gluten to see if I would feel better and back on because my doc seems to doubt that it is celiac disease. He says it may "just be ibs" which scares me because that seems to be the dark horseman of diagnosis. No cure and no way to ease symptoms (booooo). If it is IBS i'd rather be eating gluten and at least enjoying a slice of pizza once in a while. However, if not, I really want to remove it so I'll feel better. I do think I have felt better without the gluten but who knows if its just the waves of IBS as it comes and goes. I was hoping for a medical diagnosis.

Anyone else out there have thoughts on the DNA testing and if its worth it? Will it just confuse me more?

VioletBlue Contributor

It was worth it for me. BUT, and this is a big one, DNA does not prove or disprove a diagnosis of Celiac Disease. Some people with the certified 100% Celiac genes may never develop Celiac Disease. Some people with genes that are classified as gluten intolerant ONLY genes do develop Celiac Disease. Something appears to trigger the genes and without that trigger celiac disease may never take place regardless of which genes you have. This DNA science thing is far from perfect and really cannot be used to diagnose with.

For me it was worth it. It told me I had a double copy of what is considered a gluten intolerant gene. I was diagnosed with a textbook case of Celiac Disease. Go figure. Researching my DNA results allowed me to understand a lot of what I've experienced in the last twenty years. They are learning more about how specific genes effect people every day and it can be one more piece of the puzzle of understanding your own body.

And can I just say the whole IBS or IBD diagnosis thing is pure junk. I hate that they're calling a symptom of a larger problem a disease. They do that because they know they have drugs and that more drugs are in the pipeline to "treat" IBS. They can sell you those drugs by calling IBS a disease. They KNOW there's nothing they can sell you if you're diagnosed with Celiac Disease. It's all about money and big pharma and not much about the health and welfare of individuals.

Hey thanks for the reply and suggestions. i went off gluten to see if I would feel better and back on because my doc seems to doubt that it is celiac disease. He says it may "just be ibs" which scares me because that seems to be the dark horseman of diagnosis. No cure and no way to ease symptoms (booooo). If it is IBS i'd rather be eating gluten and at least enjoying a slice of pizza once in a while. However, if not, I really want to remove it so I'll feel better. I do think I have felt better without the gluten but who knows if its just the waves of IBS as it comes and goes. I was hoping for a medical diagnosis.

Anyone else out there have thoughts on the DNA testing and if its worth it? Will it just confuse me more?

sandsurfgirl Collaborator

I one thousand percent agree about IBS. I do not believe there is such a thing as IBS. I call it "I don't know so I'll give you a line of B.S." It's a fake diagnosis because they don't know what is really wrong and don't care to find out. After 40 years of suffering from gastric problems and many misdiagnoses including IBS, I'm very cynical (and bitter but that's another thread. LOL)

I believe that IBS is always caused by something and those somethings are often foods. Not always gluten, but some food is causing it. Since there is no drug cure for a food intolerance, allergy or whatever, they don't bother. I'm sure there are other things that cause IBS too, but once again, the docs don't bother. Why in the world would bowels become irritable for no reason??? It makes no sense.

I think if you want a medical diagnosis before committing to the gluten free life, then go back on gluten and find another doctor. Get more tests until you get an answer. Read enough stories on here and you'll find that most American docs know jack diddly squat about celiac and food intolerances. So you have to keep looking until you find someone that can help you get answers. Personally I wouldn't take going gluten free lightly or do it just to see if it worked. It's a pain in the butt and if I could find another way, I would take it in a heartbeat.

Oh and I think I'm confusing DNA testing with what Enterolab does, so sorry if my previous post has wrong info. I'm new to this diagnosis myself and I'm sorting it all out too.

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 SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

    3. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

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

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    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

    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.