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

To Test Or Not To Test...


ciavyn

Recommended Posts

ciavyn Contributor

Looking for opinions: I have severe bloating, gas, and "D" conditions periodically throughout the month, more often than not, which have worsened over the last two to three years. I've also been going under some of the worst stress of my life the last two to three years. Coincidence? :rolleyes:

Anyway, two years ago, a friend recommended I go with the gluten free eating when we compared symptoms, and I put it off as it seemed too limiting. Fast forward to the last two months or so, and I'm barely human. The symptoms are awful. So I decided to try it, and I've felt some relief intermittently over the last week. From what I understand, this takes some time and anything that might help is welcome, so I'll bide my time and stick with it.

So, question #1: Is it worth it to try and get tested for celiac? My doctor suspected I had IBS several years before, but since no one had any real concrete steps with which to proceed, so nothing ever happened. I DO NOT have health insurance, so if I go for testing, it's something I'll have to make payments on at my dr's office. Since it appears from what I've read that testing is often not very reliable, is it worth it to be tested?

Question #2: being currently self-diagnosed with issues with gluten, possibly a IBS or celiacs or an allergy (see question #1), I have no idea how to answer people when they ask me why I'm doing this strange eating thing ;) right before the holidays. For example, today I talked to a friend, I said it's possible I have an allergy to gluten or celiacs, and in that wonderfully snotty tone, he said, you're not self-diagnosing, are you? And my MIL thinks I'm over-reacting...which I suppose is easy to think when you are not the one embarrassed in public, a stomach three times it's normal size when affected, and D so bad I occasionally haven't made it to the restroom. Yep, I'm over-reacting. Grrr...I digress. What do you say that gives you some credence, and avoid the reactions?


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



Celiac.com Sponsor (A8-M):



Lynayah Enthusiast
Looking for opinions: I have severe bloating, gas, and "D" conditions periodically throughout the month, more often than not, which have worsened over the last two to three years. I've also been going under some of the worst stress of my life the last two to three years. Coincidence? :rolleyes:

Anyway, two years ago, a friend recommended I go with the gluten free eating when we compared symptoms, and I put it off as it seemed too limiting. Fast forward to the last two months or so, and I'm barely human. The symptoms are awful. So I decided to try it, and I've felt some relief intermittently over the last week. From what I understand, this takes some time and anything that might help is welcome, so I'll bide my time and stick with it.

So, question #1: Is it worth it to try and get tested for celiac? My doctor suspected I had IBS several years before, but since no one had any real concrete steps with which to proceed, so nothing ever happened. I DO NOT have health insurance, so if I go for testing, it's something I'll have to make payments on at my dr's office. Since it appears from what I've read that testing is often not very reliable, is it worth it to be tested?

Question #2: being currently self-diagnosed with issues with gluten, possibly a IBS or celiacs or an allergy (see question #1), I have no idea how to answer people when they ask me why I'm doing this strange eating thing ;) right before the holidays. For example, today I talked to a friend, I said it's possible I have an allergy to gluten or celiacs, and in that wonderfully snotty tone, he said, you're not self-diagnosing, are you? And my MIL thinks I'm over-reacting...which I suppose is easy to think when you are not the one embarrassed in public, a stomach three times it's normal size when affected, and D so bad I occasionally haven't made it to the restroom. Yep, I'm over-reacting. Grrr...I digress. What do you say that gives you some credence, and avoid the reactions?

Yes, it is worth it to see a doctor. Please do.

Others' opinions: All that matters is how you feel about YOU. Do what you think is right. If others understand, fine. If they don't, so be it. Do not worry about them.

Come here, and we'll give you all the support you need. Not everyone understands, but we do.

ksymonds84 Enthusiast

I would get all the testing done that you can possibly afford so that you will not second guess yourself later. The problem for some (not all) who self diagnose sometimes find themselves in a cycle of whether or not they really have a problem with gluten and find it very hard to stick to the diet. I did the self diagnoses thing kind of (my family doctor believed me to be gluten intolerant) but still kept questioning everything and wanted to make sure since this diet is for life! So I did the gluten challenge ect to get an official diagnoses to keep me straight. Now having said that, not everyone is like me and you will find plenty of wonderful self diagnosed people here who went gluten free on there own and have never looked back! Good luck with whatever you decide to do.

ang1e0251 Contributor

I am self dx'd. It was a question of economics for me. I refused to challenge months later when I could have afforded it again. The difference in my health was so dramatic to me and my family, I've never had a doubt. If you can test, go ahead. It seems like you would find a dx comforting when questioned by others.

You will have to go back to eating gluten to be tested.

ciavyn Contributor

Thank you for your thoughts. Since finances don't provide much in the way of extra funds - what with Christmas right around the corner - I may not have too many choices right now. But I'll call the doctor and see what I'd be facing. Since I just recently went off gluten, I think I'd still be okay to be tested. (?) I'm not sure.

The other issue is that this takes time to see what works the best for you, from what I've read, and it's hard to be patient. :) Especially when some of your issues are quite attention attracting...ugh. No doctor's diagnosis can tell you what is best for your lifestyle, or what is healthiest for you, and if nothing else, this is forcing me to eat how I SHOULD eat, even when I don't feel like it. I'm not willing to throw away my investment on a yen for gluten.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,023
    • Most Online (within 30 mins)
      7,748

    Tubbybooboo
    Newest Member
    Tubbybooboo
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.