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

Intro & Advice Needed (Negative Test Results)

bmama23

Recommended Posts

bmama23 Newbie
bmama23
Posted

Hi...I have been lurking here for several months and finally decided to post something!

A quick (as I can get it) backstory: after having my 2nd miscarriage back in December (have one healthy child), I began researching autoimmune disorders linked to miscarriage and found out about Celiac disease. I was in shock as I read the symptoms that I had: diarhea, constipation, bloating, gas, anxiety, nausea, skin rash, miscarriage, and a link to endometriosis (which I have). I saw a gastro doc who seemed to think I had IBS. I had one initial Celiac panel done, which was negative. I went gluten free anyway, not sure if that was a wise decision or not. I got pregnant again less than two months later. I lost that pregnancy as well. I do not know if it was because I got "glutened" a few times or if I just hadn't healed enough before getting pregnant. Any time that I have gotten glutened since going on the diet, I've gotten sick. Example- I had a bite of my son's mac & cheese (I was feeling sorry for myself) and my belly was so bloated I looked 7 months pregnant (but I obviously wasn't) and I had horrible stomach pains- here's the kicker- I didn't even SWALLOW the pasta! I spit it out because I knew it'd be a bad idea. So you get the picture. I have complete relief from symptoms on the diet.

I decided to get the Celiac gene test done (dq2 & dq8) along with some fertility tests we are running (also found out I have high thryoid antibodies which can also cause miscarriage and make me more likely to be Celiac!) and guess what- the gene tests are negative! Now, I don't know if they did the alpha or just the beta portion of gene tests but am trying to find out. I know there's a chance I could just be gluten sensitive but I don't know if it's possible to still have Celiac disease or not. My "doctor" (not any more) gave this advice, "Just go back to eating gluten!" Um, yeah, and feel sicker than a dog every day??

I guess I'm wondering if it's worth it to get the biopsy done and if I need to go back on gluten to do so. The reason I'd like a positive diagnosis is because I truly feel I have celiac disease or at least gluten intolerance and it would make things easeir for our fertility treatments. I feel like nobody believes me and the doctor I saw is just brushing it off. I feel like I have done more research than the doctor I saw. I am just so overwhelmed and I hate that this stupid disease is so hard to confirm. Should I get the entralab tests done? Should I just forget about it all? Help, please? :)

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Yes you do need to go back on gluten for at least 3 months before testing if you are going to have the biopsy done. Even then you could have a false negative. Also while the two genes you were tested for are the most common celiac associated genes they are not the only celiac associated genes. You can be celiac and be negative on testing and gene panels. Some might say you are gluten intolerant instead of celiac but the autoimmune effects are the same and the need to be strictly gluten free is just as important for both.

bmama23 Newbie
bmama23
Posted
  • Author

Yes you do need to go back on gluten for at least 3 months before testing if you are going to have the biopsy done. Even then you could have a false negative. Also while the two genes you were tested for are the most common celiac associated genes they are not the only celiac associated genes. You can be celiac and be negative on testing and gene panels. Some might say you are gluten intolerant instead of celiac but the autoimmune effects are the same and the need to be strictly gluten free is just as important for both.

Thank you for your reply. Unfortunately the thought of going back on gluten for three months is very scary and not something I am sure I want to do :( I guess I'm confused as to what the difference is between celiac disease and just being gluten sensitive. If my reactions are so severe I would assume it's celiac disease but maybe not. I know celiac disease is an autoimmune disorder but what makes GI not be?

And I just got off the phone with the nurse and she was extremely rude to me- told me I don't always answer my phone, she's not going to keep bothering the doctor with questions and that if I have any more questions I need to make an appointment with him. I'm so upset right now....

Skylark Collaborator
Skylark
Posted

Without the genes you are most likely gluten intolerant. There isn't a test for that other than response to the diet. You could gluten yourself up and get the biopsy if you're really curious but it may come back negative. Remember that your doctor does not control your diet. It's fine to stay gluten-free and simply not tell him. B)

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi...I have been lurking here for several months and finally decided to post something!

A quick (as I can get it) backstory: after having my 2nd miscarriage back in December (have one healthy child), I began researching autoimmune disorders linked to miscarriage and found out about Celiac disease. I was in shock as I read the symptoms that I had: diarhea, constipation, bloating, gas, anxiety, nausea, skin rash, miscarriage, and a link to endometriosis (which I have). I saw a gastro doc who seemed to think I had IBS. I had one initial Celiac panel done, which was negative. I went gluten free anyway, not sure if that was a wise decision or not. I got pregnant again less than two months later. I lost that pregnancy as well. I do not know if it was because I got "glutened" a few times or if I just hadn't healed enough before getting pregnant. Any time that I have gotten glutened since going on the diet, I've gotten sick. Example- I had a bite of my son's mac & cheese (I was feeling sorry for myself) and my belly was so bloated I looked 7 months pregnant (but I obviously wasn't) and I had horrible stomach pains- here's the kicker- I didn't even SWALLOW the pasta! I spit it out because I knew it'd be a bad idea. So you get the picture. I have complete relief from symptoms on the diet.

I decided to get the Celiac gene test done (dq2 & dq8) along with some fertility tests we are running (also found out I have high thryoid antibodies which can also cause miscarriage and make me more likely to be Celiac!) and guess what- the gene tests are negative! Now, I don't know if they did the alpha or just the beta portion of gene tests but am trying to find out. I know there's a chance I could just be gluten sensitive but I don't know if it's possible to still have Celiac disease or not. My "doctor" (not any more) gave this advice, "Just go back to eating gluten!" Um, yeah, and feel sicker than a dog every day??

I guess I'm wondering if it's worth it to get the biopsy done and if I need to go back on gluten to do so. The reason I'd like a positive diagnosis is because I truly feel I have celiac disease or at least gluten intolerance and it would make things easeir for our fertility treatments. I feel like nobody believes me and the doctor I saw is just brushing it off. I feel like I have done more research than the doctor I saw. I am just so overwhelmed and I hate that this stupid disease is so hard to confirm. Should I get the entralab tests done? Should I just forget about it all? Help, please? :)

First, I want to tell you how sorry I am for your losses. :(:( I also had a miscarriage last year which, looking back, I believe could have been caused by undiagnosed Celiac. :( I also have had endometriosis for almost 20 years (I am 38 now). Since then, I have gone into Premature Ovarian Failure (again, could be from Celiac, as early menopause is a related condition), so there will be no rainbow baby for me. :(

You don't have to have the genes to have Celiac. I believe there are several people on here that have Celiac and don't have DQ2 or DQ8. Plus, like you said, there are subunits of the genes that most labs don't test for.

If I were you, I would assume you have at the very least gluten intolerance, stay on the gluten-free diet (you don't need a prescription or doctors permission to do that), and get the thyroid issues under control. Hopefully that will do the trick and you will get your little miracle! ;)

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.