Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Not Diagnosed - But I Think It's Gluten! Is It?
0

4 posts in this topic

Hello,

 

I have been feeling sick for the last six months, but have been attributing all of my symptoms to a number of other things...

 

My symptoms include:

 

-Absolutely no energy (EVER), particularly after I eat.  After a meal I need to lie down. 

-After every meal (which almost always involved bread) I would feel light headed, almost like my head was in the clouds.

-I feel nauseous all of the time and feel the need to vomit for no reason.  This is most intense after eating and has finally resulted in only finding relief after I eat by vomiting.

- I don't have diarrhea or rashes

-A lot of trouble sleeping (tossing and turning), but have recently been diagnosed with sleep apnea

-I stopped ovulating 9 months ago and was diagnosed with polycystic ovarian syndrome - I now take a pill to help with this.

-bloating with abdominal pain and gas

-heartburn often, but only within the last 4 months

-I was having numbness in my feet and hands for a while, but haven't experienced this as much in the last 6 months

-I also have VERY thin hair (not sure if this would have anything to do with gluten though)

 

I was talking with a friend recently when I had to leave lunch because I felt so ill and she suggested I stop eating gluten.  So I decided to stop eating gluten just this past Monday and after only a day I felt so much better.  My energy level is like night and day compared to a week ago and I don't feel sick at all (no head in the clouds, or need to vomit).

 

I went to the doctors today to talk to them about this.  I heard the doctor talking to the RN in the hall about how this is just a fad and is all the rage with it being in the media so much lately.  They are sending me for blood work for a number of things they seemed to be favouring over anything gluten related.  From there they said the only way to test for gluten intolerance is to stop eating gluten and see how I feel.  They offered to send me for blood work for celiac on Monday - although I will have been off of gluten completely for 1 week by then (will this affect the outcome of the test?).

 

I feel like I'm not getting the proper medical advice/treatment.  Any suggestions?  Do my symptoms sound familiar to anyone?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hello, and welcome. 

 

I would accept their offer of celiac testing if I were you; ask them to do the DGP IgA and IgG as well as the tTG and total serum IgA.  Off gluten for only one week should not be long enough to affect the outcome of the testing.  I wonder what diagnosis(es) they would favor over celiac???

0

Share this post


Link to post
Share on other sites

Thanks for your reply!  I will definitely do this.  They think it is either a bacteria called Hpylori or diabetes... even though all of the symptoms, so far, have disappeared with going off of gluten. 

0

Share this post


Link to post
Share on other sites

Welcome to the board. :)

 

I would take them up on their offer to test for celiac disease too, but start eating gluten again this weekend and keep eating it until you are sure your testing is done. there is a chance that eating gluten-free will cause a negative celiac test but if you start eating gluten immediately, it will lessen the risk.

 

Another common test is the EMA Iga, but Neroli listed the main ones for you.

 

If your tests come back negative, the doctors are right in that there is no way to test for non-celiac gluten intolerance except to eat gluten-free, you might want to try the gluten-free diet for a least a few months and re-asses how you feel.

 

Good luck.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,641
    • Total Posts
      918,437
  • Topics

  • Posts

    • Anxiously waiting
      Thanks heaps. I will def be going private if the wait is too long. I have done a little research but i thought a gluten intolerance and coeliac was the same lol. My iron levels are just below average apparently but she said not bad enough for me to be this tired.
    • Celiac.com: Traveling While Gluten-Free? What To Consider From Someone with Celiac Disease
      There are a few definite truths about living gluten-free: You miss bagels every day. Curious friends regularly badger you with questions like “is ... View the full article
    • How effective is HD skin biopsy after being gluten free for a year
      DH is celiac disease that appears on the skin (gluten triggered).  It does not appear when you are consuming dairy, which sounds like a separate issue for you.   A DH biopsy requires active lesions (new/fresh) from consuming gluten.  So, if you want to be tested via a skin biopsy you must go back on gluten.  Finding a dermatologist who knows exactly how to biopsy for DH is often difficult.  Be sure your Derm is knowledable and has biopsied for DH before. Why no endoscopy for now?  I bet your GI  knows that your insurance will deny the endoscopy.  After all, you tested negative to the blood panel.  Your GI should not even ordered the blood panel knowing that you had been gluten free for months.  You have to be consuming gluten daily for 8 to 12 weeks for the blood test to be accurate.   Did you ever test positive?  Why did your primary diagnose you?  Having the gene just means you can develop celiac disease.  Some 30% of the population carries the genes.  The gene test should only be used to help rule out celiac disease.  
    • How effective is HD skin biopsy after being gluten free for a year
      No one can say exactly how long you might be able to get a positive dh biopsy after having been gluten free as long as you have been. The Chicago Celiac Disease Center says this: http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ You said you had a flare of the plaque psoriasis -- that is NOT dh so why do you think the dh biopsy will show positive? Testing positive for the celiac genes does not mean you have celiac disease. 30+% of the population have the celiac genes but only very, very small fraction of those people do or will present with celiac disease. The gene tests are only used to rule OUT celiac NOT to diagnose it. Frankly, I can understand why your GI does not put any stock in your Primary doc's thinking you have celiac disease. A positive celiac gene and the boils in your armpits which the GI never saw and were never biopsied for dh but they resolved on a gluten free diet and so did your plaque psoriasis. That's all the GI has to go on. I don't know why you are pushing an endoscopy. If you've been eating strictly gluten free then an endoscopic biopsy for celiac will be negative.  Your PCP should have done a celiac blood panel on you back when you were still eating gluten rather than dx you based on the celiac gene you tested positive for.
    • How effective is HD skin biopsy after being gluten free for a year
      I've been gluten free for a year now and my gastro wants to wait for the endocopy until I'm eligible for the colonoscopy when I turn 50 later this year. I don't think she believes I have celiac, even though I tested positive for one of the genes associated with celiac and my primary has diagnosed me as having celiac. The gluten sensitivity blood tests came back negative, of course, since I was gluten free for 9 months at that time. Why is she waiting? At any rate, My digestive system has improved greatly, but when I reintroduced non fat Greek yogurt in my diet, the plaques psoriasis returned on my elbows. My primary believes it is dermatitis herpetiformis (as well as I, since before going gluten free, I used to get boils in my armpits) and I'm scheduled for a skin biopsy in 3 weeks. However, I eliminated dairy from my diet 4 weeks ago and the plaques psoriasis is healing like it did when I eliminated gluten from my diet a year ago. If the scar is reduced to eczema, does that mean there still are IGA deposits in my skin? I don't want to resume dairy since I experienced a cross reaction to the casein in cheese and found lactose was on that same list. So my question is, how long do the granular IGA deposits remain in the skin in order to have a valid skin biopsy test performed for dermatitis herpetiformis? Since it takes 1-2 years for dermatitis herpetiformis to heal on a gluten free diet and I just had a recent flare up, can I continue on my dairy free diet or should I resume eating non fat Greek yogurt for the next 3 weeks just for this skin biopsy?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,732
    • Most Online
      1,763

    Newest Member
    SueJ
    Joined