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 This Celiac Or Sensitivity To Gluten?


michelley65

Recommended Posts

michelley65 Rookie

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!


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

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.

gf-soph Apprentice

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?

ravenwoodglass Mentor

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.

tarnalberry Community Regular

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.

michelley65 Rookie

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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,921
    • Most Online (within 30 mins)
      7,748

    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.