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

Symptoms (Also, Cyrex Gluten Panel?)


randomequine

Recommended Posts

randomequine Newbie

Hello! I'm new here but have been 'lurking' for awhile now.

A little background: A few years ago I was in an extremely stressful roommate situation, during which I was put on an antidepressant and went to counseling. Prior to that experience, I was always very healthy, exercising to maintain a good weight with very very few medical problems. Following that experience, I gained about 70 lbs in just a few months, my hair began falling out, began getting chronic migraines, have issues with dry skin and brittle nails, trouble sleeping, continued low grade depression, my joints hurt like I'm much older than I am (24), am ALWAYS tired, never feeling rested, and have a horrid brain fog where I cannot remember much of anything (it got so bad it was starting to affect my work, hence seeking medical attention now). The only sticking point is that I don't have 'bad' digestive issues, just a swing between moderate constipation and moderate diarrhea. I was also severely Vitamin D deficient when I came to my new endo.

So far no doctors have really 'done' anything - I figured it was thyroid related since thyroid runs in my family, but doctors say no (though I'm not entirely convinced). Finally, my new endo suggested running a Cyrex gluten panel (a new kind that tests for inlolerance, not just Celiac?) along with some other hormonal panels and my insulin level.

After reading here, I can't help but wonder if my symptoms are gluten related....anyone deal with similar? Also, is anyone familiar with the Cyrex gluten panel and whether it's accurate? I have to wait to be tested as the doctors office has to order the panel and get it approved (yay bureaucracy!) .

Thanks everyone! I'm excited to be a part of such a great community!


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Hello! I'm new here but have been 'lurking' for awhile now.

A little background: A few years ago I was in an extremely stressful roommate situation, during which I was put on an antidepressant and went to counseling. Prior to that experience, I was always very healthy, exercising to maintain a good weight with very very few medical problems. Following that experience, I gained about 70 lbs in just a few months, my hair began falling out, began getting chronic migraines, have issues with dry skin and brittle nails, trouble sleeping, continued low grade depression, my joints hurt like I'm much older than I am (24), am ALWAYS tired, never feeling rested, and have a horrid brain fog where I cannot remember much of anything (it got so bad it was starting to affect my work, hence seeking medical attention now). The only sticking point is that I don't have 'bad' digestive issues, just a swing between moderate constipation and moderate diarrhea. I was also severely Vitamin D deficient when I came to my new endo.

So far no doctors have really 'done' anything - I figured it was thyroid related since thyroid runs in my family, but doctors say no (though I'm not entirely convinced). Finally, my new endo suggested running a Cyrex gluten panel (a new kind that tests for inlolerance, not just Celiac?) along with some other hormonal panels and my insulin level.

After reading here, I can't help but wonder if my symptoms are gluten related....anyone deal with similar? Also, is anyone familiar with the Cyrex gluten panel and whether it's accurate? I have to wait to be tested as the doctors office has to order the panel and get it approved (yay bureaucracy!) .

Thanks everyone! I'm excited to be a part of such a great community!

An actual MD recommended that test? Please read something from celiac experts/ researchers

Open Original Shared Link

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support......."

Why not go to a MD and get a legitimate Celiac blood panel to start with? You have many symptoms of celiac - D & C, migraines, vitamin deficiencies, etc

Open Original Shared Link

randomequine Newbie

An actual MD recommended that test? Please read something from celiac experts/ researchersOpen Original Shared Link

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support......."

Why not go to a MD and get a legitimate Celiac blood panel to start with? You have many symptoms of celiac - D & C, migraines, vitamin deficiencies, etcOpen Original Shared Link

Hmmmmm thanks for that info! What he perscribed is a blood test, not a stool/saliva test and he said it was new? I'm not sure.

He said he wasn't going to run a Celiac panel due to my lack of digestive issues.... Maybe it's time to find (yet another..... :( ) a new doctor.

I'm just really frustrated that I NEVER feel well....but I don't want to try gluten free until I'm tested....

kareng Grand Master

Meant to add- I like your name. I had funny thoughts of a random horse walking down the street. Expected a picture of a horse. :)

kareng Grand Master

Hmmmmm thanks for that info! What he perscribed is a blood test, not a stool/saliva test and he said it was new? I'm not sure.

He said he wasn't going to run a Celiac panel due to my lack of digestive issues.... Maybe it's time to find (yet another..... :( ) a new doctor.

I'm just really frustrated that I NEVER feel well....but I don't want to try gluten free until I'm tested....

They actually say they don't recognize stool or otherwise from those companies. There isn't currently a medically accepted test for gluten sensitivity except to stop eating it and see what happens. But I would hate for you to do that without getting tested first. Any doc can order the test - even your OB/ GYN. But an endocrine doc isn't usually involved with that so he probably doesn't know much about it.

Open Original Shared Link

Can I be screened for non-celiac gluten sensitivity?

There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity.

I would print off the list of symptoms - at least the short list, from the link I gave you. Highlight all the ones that apply to you and ask your regular doc for the celiac blood panel. Make sure the doc can see where you got the list so he knows its a legit source.

Sorry. For some reason on my iPad, if I want to go to another site and copy something to here, I sometimes lose my whole post. So I end up posting and then editing

randomequine Newbie

They actually say they don't recognize stool or otherwise from those companies. There isn't currently a medically accepted test for gluten sensitivity except to stop eating it and see what happens. But I would hate for you to do that without getting tested first. Any doc can order the test - even your OB/ GYN. But an endocrine doc isn't usually involved with that so he probably doesn't know much about it.Open Original Shared Link

Can I be screened for non-celiac gluten sensitivity?

There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity.

Thanks :) The endo is ordering it because he was the one I went to since all my symptoms match hypothyroid (and it runs VERYY strongly in my family) - he then told me that I was just Vitamin D deficient and he'd 'watch it' and I broke down in his office so he offered to run some hormone panels and the gluten test. Your response made me realize that perhaps I need to check out someone else so I'm going to do some research and possibly find another doc who might listen a little better and know more about possible Celiac/gluten sensitivity!

I do have a horse, but the forum pulled my Facebook profile picture instead LOL

kareng Grand Master

Thanks :) The endo is ordering it because he was the one I went to since all my symptoms match hypothyroid (and it runs VERYY strongly in my family) - he then told me that I was just Vitamin D deficient and he'd 'watch it' and I broke down in his office so he offered to run some hormone panels and the gluten test. Your response made me realize that perhaps I need to check out someone else so I'm going to do some research and possibly find another doc who might listen a little better and know more about possible Celiac/gluten sensitivity!

I do have a horse, but the forum pulled my Facebook profile picture instead LOL

You can go into your profile and change your picture if you want. I do it often! :)


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



Celiac.com Sponsor (A8-M):



BlessedMommy Rising Star

Yes, please make sure that you get your doc to run the celiac panel before going gluten-free. Otherwise you may lose your opportunity to get a diagnosis, forever. In my case, gluten-free helped me and when I went back to eating gluten, the symptoms were very dangerous and severe so I couldn't finish the gluten trial and will never get a diagnosis.

cyclinglady Grand Master

My only symptom was anemia. No intestinal issues. My diagnosis was a shock! A few months later, I had a fracture and now have osteoporosis. Get your doctor to order a complete celiac blood panel.

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. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    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

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.