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

Having Symptoms, After Being Tested Negative


BabyT

Recommended Posts

BabyT Newbie

I've always had stomach problems since birth. I've been in and out of doctor's offices thorughout my entire life, and each time my doctor would basically think im making something up, or just put me on some medication for the hell of it. A little overa year ago, my mom met a woman who had exactly the same problems as me, having reactions to random foods. She told my mom she had Celiac Disease. I went to see a gastroenterologist thinking I may have the same thing, got the whole gammet of testing, only to be told i was negative for celiac. Even though i tested negative, i still feel this is what is bothering me. I tried going gluten free for a while, and if elt 10 times better than i usually did. I'm wondering if maybe it went un-diagnosed because i went gluten free for a while before getting tested... I don't know. But I know that i feel much better when I don't eat any form of gluten. I'm wondering if I do in fact have the disease, or something just like it. Has anyone else experienced this?


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



Celiac.com Sponsor (A8-M):



Guest cassidy

From what I have read on this board, about half the people here have experienced this. I had a negative blood test and biopsy. I went gluten-free the day of the blood test because my mom has the skin reaction to gluten and I figured my test would be positive. I felt so much better that I didn't care when my test was negative. It is difficult dealing with doctors when they don't believe you, but I feel better so I'm sticking to it.

Trust your body. If you felt better being gluten-free, then do it. I think we all just want to feel better, so if it worked for you, do it. There is a lab that does stool & gene tests, that may show you are positive even if the blood test doesn't.

ravenwoodglass Mentor
I've always had stomach problems since birth. I've been in and out of doctor's offices thorughout my entire life, and each time my doctor would basically think im making something up, or just put me on some medication for the hell of it. A little overa year ago, my mom met a woman who had exactly the same problems as me, having reactions to random foods. She told my mom she had Celiac Disease. I went to see a gastroenterologist thinking I may have the same thing, got the whole gammet of testing, only to be told i was negative for celiac. Even though i tested negative, i still feel this is what is bothering me. I tried going gluten free for a while, and if elt 10 times better than i usually did. I'm wondering if maybe it went un-diagnosed because i went gluten free for a while before getting tested... I don't know. But I know that i feel much better when I don't eat any form of gluten. I'm wondering if I do in fact have the disease, or something just like it. Has anyone else experienced this?

They tested me over and over again and I always showed up negative. Unfortunately it was 5 more years of hell (and 17 thousand dollars a year) before a savvy allergist instructed me on an elimination diet and celiac was finally found. I consider those tests next to worthless for many of us. If a gluten-free diet helped stay with it. Your body knows more about you than the doctors do.

jnifred Explorer

I had unknowingly been eating very little gluten for years, after I found out about gluten and just looked at what I was eating without changing a thing, I realized that I could go several days without eating gluten. I always knew that too much bread made me feel icky, but never heard of gluten or Celiac and so I just thought it was too "heavy". Anyway..... I tested negative too, but my doctor told me he wasn't surprised since my diet was low gluten for years, not enough anitbodies to show up. I was on the high side of normal, but still normal.

So it wasn't hard for me to cut out that last little bit of gluten, I have found wonderful substitutes for cakes, pizza crust, crackers and such so that I really ahve not missed eating anything. I need to make gluten-free toasted ravioli and crab rangoon, which I know I can do, I just need a whole day to waste on that project and it's not at the top of my list, KWIM?? I feel so much better and my rhuematoid arthritis is much better too. GOOD LUCK

penguin Community Regular
I had unknowingly been eating very little gluten for years, after I found out about gluten and just looked at what I was eating without changing a thing, I realized that I could go several days without eating gluten. I always knew that too much bread made me feel icky, but never heard of gluten or Celiac and so I just thought it was too "heavy".

I noticed the same thing, that when I went gluten-free, I wasn't eating much gluten to begin with. I didn't eat bread regularly, and I was afraid of pasta because it made my stomach hurt (I thought it was the marinara sauce doing it). I don't really even like cake or cookies or donuts much. I think my body was trying to tell me that wheat isn't good for me. It was funny, I was trying to figure out what I would make for dinner now when I realized that 99% of my rotation was gluten-free anyway. Follow your instincts.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,954
    • Most Online (within 30 mins)
      7,748

    Godfather
    Newest Member
    Godfather
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
    • Mnofsinger
      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
×
×
  • Create New...