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

Is This Celiac Or Sensitivity To Gluten?

michelley65

Recommended Posts

michelley65 Rookie
michelley65
Posted

Im going absolutely nuts trying to figure out what to think of my condition.I have been battling this problem of terrible gas and bloating,and even diahrea after eating for probably 5 years now.I noticed that it was always worse after eating gluten.I went to a gasto a year and a half ago...he did a hydrogen breath test and said its bacterial overgrowth.He gave me antibiotics and after quite a few rounds...it was still going on.I told the doctor about the gluten problem,so he ordered a test for celiac.The test came back negative.Since then,I have been watching what I eat..until I am home from work..then I eat gluten and it starts up..every night!!I called the doc..he ordered bloodwork for celiac again.I had it drawn thismorning..but I think it will come back negative again.I know I atleast have a sensitivity to gluten..maybe even celiac..who knows.Is anyone out there having this same problem with a negative test result?I am trying to have a gluten-free diet now,but I mess up here and there and then Im in pain all evening.HELP!

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

Im going absolutely nuts trying to figure out what to think of my condition.I have been battling this problem of terrible gas and bloating,and even diahrea after eating for probably 5 years now.I noticed that it was always worse after eating gluten.I went to a gasto a year and a half ago...he did a hydrogen breath test and said its bacterial overgrowth.He gave me antibiotics and after quite a few rounds...it was still going on.I told the doctor about the gluten problem,so he ordered a test for celiac.The test came back negative.Since then,I have been watching what I eat..until I am home from work..then I eat gluten and it starts up..every night!!I called the doc..he ordered bloodwork for celiac again.I had it drawn thismorning..but I think it will come back negative again.I know I atleast have a sensitivity to gluten..maybe even celiac..who knows.Is anyone out there having this same problem with a negative test result?I am trying to have a gluten-free diet now,but I mess up here and there and then Im in pain all evening.HELP!

I guess I just don't understand why you would continue to eat gluten when you have such reactions. The lifelong cure for either Celiac or gluten intolerance is a 100% strict gluten free diet. Stick to the diet religiously if you want to feel better. It's not a part time thing.

Link to comment
Share on other sites
gf-soph Apprentice
gf-soph
Posted

What it comes down to is that you don't have to have a diagnosis of celiac in order to go gluten free. I can understand wanting the tests to come back positive so you are sure, but you have to listen to your body.

Assuming these tests come back negative, why not try the diet, strictly, for at least a few months. NO cheating. If you feel better, keep going with the diet. There is a lot of information around here about testing, and about false negatives as well. There are also people who have gone gluten free without a positive blood test and feel much better.

You've had problems for 5 years, so why not put aside a few months to really sort out whether gluten is the problem. You obviously suspect it, so cut it out! It may be that you think the diet will be too hard, but you will adjust. This might be a chance to get well again, why not give it a go?

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

Some of us will never show up in blood tests. I don't know why but the NIH estimates that 20% of us have false negative results. Being one of those who don't show in blood tests came very close to costing me my life. When all your testing is done get on the diet for at least 3 months or so. Your body may give you the answer testing cannot. I did finally get diagnosed but was close to death by that time so don't wait years for a positive blood test before you give the diet a shot.

Link to comment
Share on other sites
tarnalberry Community Regular
tarnalberry
Posted

You don't need a blood test to know that gluten isn't good for you - your symptoms tell you that.

Just like you don't need someone to tell you that smacking your head against the wall is going to hurt - you just don't do it.

Ok, ok... maintaining a gluten free diet isn't quite that easy; we don't have people banging their heads against walls all the time and saying it feels really good even when we think it doesn't. But the concept is the same.

There aren't any good, main-stream accepted tests for non-celiac gluten intolerance yet. Not to mention celiac tests are NOT a simple "yes/no" read. If you know you do better without gluten, make the decision to go gluten free, and stick with it. The learning curve is hard (not just learning the foods/labels/etc., but the habits and mindset), but you can do it.

Link to comment
Share on other sites
michelley65 Rookie
michelley65
  • Author
Posted

Thankyou all for your advise...I am trying so hard to stick with this.I have been almost gluten free for two weeks now...but am making little mistakes with seasonings and such.I have alot to learn!Does anyone know if pizza sauce is gluten free?I wanted to make a pizza tonight,but wasnt sure.

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      125,767
    • Most Online (within 30 mins)
      7,748
    Pasquale De Blasio
    Newest Member
    Pasquale De Blasio
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      68.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Elliebee
      Does Hashimoto’s Hypothyroidism elevate Ttg levels ? I have had 3 blood test results where ttg levels are around 39-43 (range 0-19). The first test was in 2021 before I was diagnosed with autoimmune thyroid disease. I had an endos

      By Elliebee · Posted

      Referring to Anti-tissue transglutnase and then iga antibodies . If that makes sense ?  yes eating gluten 
    • trents
      Does Hashimoto’s Hypothyroidism elevate Ttg levels ? I have had 3 blood test results where ttg levels are around 39-43 (range 0-19). The first test was in 2021 before I was diagnosed with autoimmune thyroid disease. I had an endos

      By trents · Posted

      Are you following a strict gluten-free diet? When you refer to ttg I assume you mean ttg-iga and not ttg-igg?
    • Elliebee
      Does Hashimoto’s Hypothyroidism elevate Ttg levels ? I have had 3 blood test results where ttg levels are around 39-43 (range 0-19). The first test was in 2021 before I was diagnosed with autoimmune thyroid disease. I had an endos

      By Elliebee · Posted

      Does autoimmune thyroid disease (Hypothyroidism) elevate Ttg levels ? I have had 3 blood test results where ttg levels are around 39-43 (range 0-19). The first test was in 2021 before I was diagnosed with autoimmune thyroid disease. I had an endoscopy in 2021 which was negative. Diagnosed with Autoimmune thyroid disease this year and tested for celiac disease as two diseases often coexist. First results showed ttg  of 43 , total iga in range and negative for ema . Dr wanted to retest in 12 weeks and I’ve just had results with ttg dropping to 39, total iga in range but did not test EMA. The only thing that has changed between 2 and 3 test is being on levothyroxine for my thyroid. I don’t know whether I should have a second endoscopy? Dr is seeking advice from gastroenterologist. i did read that Autoimmune thyroid disease /Hashimoto disease can elevate ttg levels. Any advice please?     
    • julie falco
      Lactate Dehydrogenase (Blood) be caused by celiac disease

      By julie falco · Posted

      thank you for the response.
    • Dhruv
      Confused with test results

      By Dhruv · Posted

      @trents I absolutely understand the perspective of getting off completely from wheat,  but sometimes situation may occur that you won't have choice to eat other than wheat,  my son travels a lot, since they travel in team, it's not easy to go out and find him a gluten free every single time! I have seen, even in NJ I m struggling to find out gluten free stuff, in this country we don't get fresh food in stores, other day i saw gluten free bread so hard that will never feel to eat it! Once in while means once in a while, when there is no absolute option. Here all goes by book, there is no enough scientific research done yet on eating gluten with celiac,  everyone has there own narrative,  only it being said don't eat wheat, but Noone has come up with the experience. And moreover my sons diagnosis is yet to define, whether he has celiac or NCGS. last time his endoscopy came negative hence doctor did not bother to tell us. I hope this time it will be the same case. We are figuring out why his billirubin is high, may be that could be the reason his igg iga test is high, will get check on all and come to the conclusion. My son and us is absolutely fine not eating gluten, but one can't guarantee that every time they will get the gluten free food other than home. I also don't trust under the table of "gluten free products" have see people still have same iga igg count even after following the diet. This is all learnings, will keep him under observation and go through the regular testing to find out how his body reacts to what.  I may sound like a fool, but medical is scam in US, hence i would consult doctors in India. 14 years ago they have announced i had a breast cancer, which was not, since then I don't trust medical system here.
×
×
  • Create New...