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

Which Test Is Most Accurate?

LoisArbuckle

Recommended Posts

LoisArbuckle Rookie
LoisArbuckle
Posted

I have all the symptoms of Celiac disease. Even some childhood problems I'm just now realizing after reading the book "Celiac Disease: A hidden epidemic". I've been gluten free for 3 weeks and most of my major issues have disappeared. This week we went out to my favorite Thai place called Surin. They said their food was wheat free. I got really sick. Now I'm a little confused so I'm looking into testing. I'm having a hard time telling my family I can't eat gluten. I just know they think I'm a hypochondriac. Anyway...

Do you guys know what is the best way for me to get an accurate test? I do not have insurance so, keep that in mind.

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

Celiac.com Sponsor (A8-M):


sbj Rookie
sbj
Posted

I advise you to not mess around with your health. If you are/were having symptoms then you really owe it to yourself to see a medical professional. A single doctor's visit is going to cost you less than these other tests you are thinking about. I think you are jumping the gun, trying to confirm your own diagnosis. (In other words, you have already diagnosed yourself with celiac, now you're not sure so you are going to test for celiac.) That's too quick and it's a bridge too far. You don't know if it was celiac to begin with. Digestion problems can be very serious. What if it is something else entirely - say an ulcer or tumorous growth? Aren't you jumping the gun immediately testing for celiac?

Why not tell us what your symptoms are first as a starting point? If you are considering spending $100, $200, $400 for testing why not spend that amount on a doctor's visit first? Tell us where you live and someone might even be able to recommend a good MD well-versed in celiac who you can trust.

aikiducky Apprentice
aikiducky
Posted

About the accuracy of the tests - if you want an official diagnosis that a doctor will accept, what you need is a blood test (nowadays usually endomysial antibody (EmA), tissue transglutaminase (TTg) and total IGA) combined with a biopsy of your small intestine (so an endoscopy, NOT a colonoscopy).

I think the parent site of this board, celiac.com, has some articles about testing.

None of the tests are 100% accurate, but the blood tests above are quite specific meaning that if they are positive it's very unlikely to be anything else but celiac. Ditto for a positive biopsy.

Stool testing can tell you whether or not you are sensitive to gluten, but not WHY you are sensitive to it. Another way to find that out is by taking gluten out of your diet, the reintroducing it. If step one relieves your symptoms and step two brings them back, you are probably sensitive to gluten. But that doesn't tell you anything about the reason why.

I'm not officially diagnosed myself, I'm four years gluten free and healthy and happy without a diagnosis. But I encourage everyone who still hasn't been gluten free for too long to seek an official diagnosis. After you have been gluten free for a while your intestines heal, and your bloodwork returns to normal, and then it's almost impossible to tell whether or not you have celiac or not. A person with celiac needs to be strictly gluten free for the rest of their life (depending on your age, maybe even for a good 50 years!), including all kinds of life situations where you might need an official diagnosis. If at all possible, try to get one before going gluten free.

Pauliina

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

oppss

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
I advise you to not mess around with your health. If you are/were having symptoms then you really owe it to yourself to see a medical professional. A single doctor's visit is going to cost you less than these other tests you are thinking about. I think you are jumping the gun, trying to confirm your own diagnosis. (In other words, you have already diagnosed yourself with celiac, now you're not sure so you are going to test for celiac.) That's too quick and it's a bridge too far. You don't know if it was celiac to begin with. Digestion problems can be very serious. What if it is something else entirely - say an ulcer or tumorous growth? Aren't you jumping the gun immediately testing for celiac?

Why not tell us what your symptoms are first as a starting point? If you are considering spending $100, $200, $400 for testing why not spend that amount on a doctor's visit first? Tell us where you live and someone might even be able to recommend a good MD well-versed in celiac who you can trust.

Thank you all very much for taking time to answer my questions. In a previous post I asked If it was possible to find out on my own if I had celiac. I also posted all of my health issues. I'm not "jumping the gun".. I have many many reasons to think it is celiac. My 2 cousins and aunt have just been diagnosed with celiac disease. We all have had the same problems for years. That's when I found out what the disease was, I'd never heard of it before.

My health issues are: acid reflux, vomiting almost daily(after eating anything with gluten or msg), constipation, depression, bad leg pains (like growing pains, had them since I was a child).

I've been clinically diagnosed with acid reflux, GERD, depression, dyspepsia, and IBS. None of the diets or meds for these worked.

I've had 2 upperGI/endoscopy done. I called the doctor yesterday and asked if he did a biopsy from my small intestine. He said he didn't take any biopsy and didn't even go into my small intestine and that nothing was wrong with me.. I'm just depressed. Then he laughed and gave me 7 different antidepressants within a years time.

I'm desperate and tired of being sick.. and have no money. Please help.

happygirl Collaborator
happygirl
Posted

LA - see my PM.

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

ALSO-

I've been almost gluten free for 3 weeks. Almost all of the stomach problems subsided. Still having bad leg pains. When I accidently ate gluten I vomited.

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

Celiac.com Sponsor (A8-M):


LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
LA - see my PM.

Happygirl, what is PM?

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
Happygirl, what is PM?

PM- Personal Message, got it! : )

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

OK GUYS... I'm done.

I've been as close to gluten free as possible for 3 weeks and fine I just ate a slice of bread to see what would happen and within 30 minutes I was bloated, hurting, and puking. I have a good enough answer. I just wont eat gluten!

Thank you so much for all your responses. Please keep in touch.

happygirl Collaborator
happygirl
Posted

Hang in there!!!!!

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      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.
    2. trents
      - 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?

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

      IBS-D vs Celiac

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

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

      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
    5. catnapt
      - 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?

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

  • Member Statistics

    • Total Members
      133,323
    • 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
      IBS-D vs Celiac

      By trents · Posted

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

      By trents · Posted

      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
      IBS-D vs Celiac

      By SilkieFairy · Posted

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

      By catnapt · Posted

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

      By catnapt · Posted

      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.