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

Wondering If This Could Be Celiac/gluten Intolerance


struggling

Recommended Posts

struggling Newbie

Hi I am new here and am hoping that I can find some support and/or advice on what I have been dealing with. I am 23 y/o female and am/was a competitive athlete (distance running). About 2 years ago I went from being extremely fit and healthy into a downward spiral. The long and short of it is that now two years and 3 stress fractures, chronic fatique/ iron deficiency, asthmatic like symptoms (difficulty taking a deep breath, lots of yawning), chronic brain fog and a slough of GI issues ( i.e. bloating, frequent inconsistent stools(some hard, some very fatty and loose), bouts of painful and embarrassing gas with alternating C and D...sorry for the details) and a whole lot of stress because of it all, I am just now starting to wonder if this could be an intolerance. I am pretty much fed up with Dr's telling me it is just stress and then sending me home with laxatives (does that make any sense?) or anti-anxiety meds!

So that was just the past year that this all came about. Since I can remember I have had a touchy and gassy GI system but I never thought much of it as I figured it had to do with all the veggies and fiber I ate plus my running. I have also always had pretty bad seasonal allergies and very dry skin with chronic little red bumps on the back of my upper and lower arms. Not sure if any of that is related but thought I might as well throw it out there.

Anyways just recently after doing some research I decided on my own to try and go gluten free...I figured it couldn't hurt and since no doctor seemed to be listening to me anyways I might as well give it a try. The results, well, they have been pretty noticeable. My energy levels have increased quite a bit as well as my "brain fog" seeming to lift. My GI system appears to have quieted down some too...is this noticeable decrease in symptoms enough to assume this is gluten related? Should I push to get tested by my doctor? I have one second cousin that has celiacs but it is unknown which side of the family it comes from, but I guess it is possible that it could run on the side I am related to. The thought of finding an culprit to these problems, and one that I can control almost seems too good to be true.

Thanks for any help. I really really appreciate it.


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



Celiac.com Sponsor (A8-M):



struggling Newbie

I guess I am just wondering if I am jumping to conclusions or over analyzing things...I am pretty desperate as my life pretty much seemed to deteriorate out of nowhere over the last two years.

buffettbride Enthusiast

I certainly wouldn't rule it out and your symptoms seem consistent with the many symptoms of gluten intolerance and celiac, especially since you seemed to have a positive response to a gluten-free diet. It would definitely be worth seeing a good GI doc about, although the testing process requires for you to continue eating gluten.

Even then, the tests aren't always reliable. Some folks like to use Open Original Shared Link as well, which can also do a genetic screen for the celiac and gluten intolerant genes.

Most importantly, though, if you get relief from a gluten-free diet, then regardless of a positive or negative diagnosis, you don't need a doctor's permission to follow it.

CarlaB Enthusiast

If you want to be tested for celiac, you need to do it now .... and you'll need to be eating gluten for the testing. It would be easier for you to go back on gluten now than to wait and go back on it for months after you've been gluten-free.

In my opinion, if all your health concerns clear up on a gluten-free diet, that says a lot!

Some of us have gluten intolerance because of another underlying health concern.

For me, my GI tract was always a weak area, as you describe. I got Lyme Disease, and my GI tract was one of the most affected areas.

I also had the shortness of breath you describe .... like I was hungry for air and couldn't get a full breath. That is from a coinfection of the lyme. I was tested for asthma ... I did not have it, I was actually hyperventilating.

My cognitive issues/brain fog eventually go pretty severe, too. Also, heart palpitations, joint pain, muscle aches, fatigue, etc.

Now that I'm treating the Lyme, the gluten intolerance went away entirely because it was a secondary problem to the Lyme. There is a thread here that can tell you more about this. Open Original Shared Link

On the other hand, if gluten is the primary problem, your health concerns should clear up. If they don't, you will want to keep looking for what else might be the problem along with gluten.

struggling Newbie

Thank you so much for you replies. Just having some form of support is really appreciated. I keep going back and forth on whether or not it really could be the case especially since my GI issues are still present some, but noticeably less (the biggest thing is that I haven't had any debilitating bloating in the past week +). I can be hyper-analytical and too hard on myself. However the lifting of the major clearing of brain fog and increase in energy levels I think is enough to say there is something going on so regardless of what future tests might say I am definitely going to stick to these dietary modifications. I want so badly to be able to get back to my running again but honestly the biggest things is that I just long to feel myself and be healthy again.

sorry for the venting, it just feels good to have a place where you can vent and people understand.

I have read, here and in other research, that the testing for celiacs/gluten intolerance are a bit shaky, but what methods do you think are the best out of what is available? I see that enterolab is something that is used quite often outside of the dr. office and it is something I think I may consider depending on how my appt goes on monday.

Anyways thanks again.:)

buffettbride Enthusiast

I don't know what I would do about this forum. My learning curve for the gluten-free life would have not have been so quick had I not found this place!

Trillian Rookie
Hi I am new here and am hoping that I can find some support and/or advice on what I have been dealing with. I am 23 y/o female and am/was a competitive athlete (distance running). About 2 years ago I went from being extremely fit and healthy into a downward spiral. The long and short of it is that now two years and 3 stress fractures, chronic fatique/ iron deficiency, asthmatic like symptoms (difficulty taking a deep breath, lots of yawning), chronic brain fog and a slough of GI issues ( i.e. bloating, frequent inconsistent stools(some hard, some very fatty and loose), bouts of painful and embarrassing gas with alternating C and D...sorry for the details) and a whole lot of stress because of it all, I am just now starting to wonder if this could be an intolerance. I am pretty much fed up with Dr's telling me it is just stress and then sending me home with laxatives (does that make any sense?) or anti-anxiety meds!

Thanks for any help. I really really appreciate it.

Your fractures and iron deficiencies can be direct effects of celiac. You should get a DEXA scan to check for bone-density, and get your iron and feritin levels checked. Since you've had 3 fractures, you probably have osteopenia or osteoporosis. I was diagnosed with osteoporosis (3 fractures in 3 years) and anemia first, and because of them, I found out that I have Celiac. Osteoporosis and anemia are common problems for people with Celiac and should be monitored by your doctor.


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



Celiac.com Sponsor (A8-M):



struggling Newbie

Just out of curiosity what enterolab tests do people recommend. Like I said I will probably consider this after seeing my doctor on Monday. Has literature been published yet on their specificity and sensitivity? I realize that no tests out there are completely accurate and that the dietary changes are the biggest indicator but still for some reason I really want to have some test tell me what is going on. I shouldn't but I do.

CarlaB Enthusiast

The Enterolab tests can only tell you whether you are sensitive to gluten .... something you can find out by dietary response.

You can be genetically tested to see if you have the markers for celiac disease. Thirty percent have celiac genes, one percent have celiac, so having the markers for it does not mean you have it.

They also test for gluten sensitive genes. However, unless you're Asian, you have two gluten sensitive or celiac genes. Every single gene is considered gluten sensitive except for DQ4, which is only found in Asians.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,159
    • Most Online (within 30 mins)
      7,748

    Laz
    Newest Member
    Laz
    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

    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
    • Scott Adams
      You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.
×
×
  • Create New...