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

Recently Diagnosed?


Windsblw

Recommended Posts

Windsblw Newbie

From about 6 years old I can remember having stomach pains. I have never really felt "healthy", I am not sure what healthy is "supposed" to feel so it may be relative. During my teenage years my stomach and all the other digestive anatomies below the stomach was always gassy, nervous, achy, pain and chronic GERDS, I knew something was wrong. Over the last 20 years ( I am now 34) I had seen multiple gastro doctors, internal doctor, and everyone else under the sun with nothing coming from it except prescriptions of prevacid or "you must have IBS". I on a few occasions I requested an endeoscopy with the usual "you don't need that your to young". After a while I just excepted It is what it is. Well it finally got so bad I saw a local Digestive Dr. and demanded I get that endeoscopy. With the 20 years of GERDs and my apparent distress about not being treated in the past he agreed. We was looking for ulcers and Barrettes disease so he did several biopsies, one of them in my duodenum. Everything came back mostly normal except "The overall villous architecture is distorted. The villi appear short and blunt. There is an increase in the number of chronic inflammatory cells with lamina propria. Crypt hyperplasia is also seen". SO the digestive dr. said it seems you might have Celiacs but we need to confirm with blood work. The blood work came back with equivocal on the ttg iga but on the gliadin iga it came back negative. I saw my GP who said she believed I was a celiac but the digestive doctor said I did not. I know blood test are very inaccurate but I am wondering which diagnosis should I listen to. I also have a very strange skin problem no Dermatologist can explain, and all my sister and aunt on one side of my Family have Hypothyroidism ( I know there could be a genetic component there). I would love to be more certain see as a celiac diet is a major change for me and family. Sorry for the belabored post.

Any input would be very welcome.


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor

From about 6 years old I can remember having stomach pains. I have never really felt "healthy", I am not sure what healthy is "supposed" to feel so it may be relative. During my teenage years my stomach and all the other digestive anatomies below the stomach was always gassy, nervous, achy, pain and chronic GERDS, I knew something was wrong. Over the last 20 years ( I am now 34) I had seen multiple gastro doctors, internal doctor, and everyone else under the sun with nothing coming from it except prescriptions of prevacid or "you must have IBS". I on a few occasions I requested an endeoscopy with the usual "you don't need that your to young". After a while I just excepted It is what it is. Well it finally got so bad I saw a local Digestive Dr. and demanded I get that endeoscopy. With the 20 years of GERDs and my apparent distress about not being treated in the past he agreed. We was looking for ulcers and Barrettes disease so he did several biopsies, one of them in my duodenum. Everything came back mostly normal except "The overall villous architecture is distorted. The villi appear short and blunt. There is an increase in the number of chronic inflammatory cells with lamina propria. Crypt hyperplasia is also seen". SO the digestive dr. said it seems you might have Celiacs but we need to confirm with blood work. The blood work came back with equivocal on the ttg iga but on the gliadin iga it came back negative. I saw my GP who said she believed I was a celiac but the digestive doctor said I did not. I know blood test are very inaccurate but I am wondering which diagnosis should I listen to. I also have a very strange skin problem no Dermatologist can explain, and all my sister and aunt on one side of my Family have Hypothyroidism ( I know there could be a genetic component there). I would love to be more certain see as a celiac diet is a major change for me and family. Sorry for the belabored post.

Any input would be very welcome.

If you could post your results from the blood work, someone here could decipher them for you. Not all doctors know what they are doing when interpreting the results, which would explain the discrepancy between the two doctors.

But really, if you've got villous atrophy, you have the answer.

If you need more proof, you could get your rash biopsied. Just make sure the doctor knows to biopsy the area next to the rash, not the rash itself.

Last option is to try the diet out and see how you feel. Yes, it's a major change, but very do-able. And once you start feeling better, you'll never want to go back! :)

Windsblw Newbie

(tTg) Ab, IgA Results: 5 h

Reference Range

<5 Negative

5-8 Equivocal

>8 Positive

Gliadin Ab IgA Results: 6

Reference Range

<11 Negative

11-17 Equivocal

>17 Positive

Iga 263 81-463 mg/dl

Biopsy Results: "The overall villous architecture is distorted. The villi appear short and blunt. There is an increase in the number of chronic inflammatory cells with lamina propria. Crypt hyperplasia is also seen. This histology changes are non-specific. However, These changes may reflect early or partially treated celiac sprue, Bacterial overgrowth, Hypersensitivity reaction to non-gluten proteins, tropical sprue or protein calorie malnutrition. Clinical correlation is needed.

What do you think?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,164
    • Most Online (within 30 mins)
      7,748

    VGL
    Newest Member
    VGL
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • 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/   
×
×
  • Create New...