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

Looking For Insight.


elizjk

Recommended Posts

elizjk Newbie

Hi, I am new. I have had food issues for as long as I can remember and things have worsened in the past few months. I recently saw my PCP and had her check a celiac panel. The results were negative (but she didn't check a serum IgA). My TSH was also within normal limits. CBC was great. I have scheduled an appointment with my allergist for November... but I wanted to see if you knowledgable folks have any insight.

As a kid I was a picky eater and had trouble gaining weight. My mom would feed me frappes (milkshakes for you non north easterners) to get extra calories in me. I would have frequent stomach aches. Things worsened as a teen (frequent diarrhea) and I saw a GI doc who basically recommended more fiber. It helped a little but I still had symptoms. In my early 20s I finally saw an allergist after my then PCP found my shellfish allergy on a blood test in addition to my chronic eczema, asthma and seasonal allergies. I had a scratch test and was basically allergic to everything except dogs. I have eliminated fish, shellfish, birch related tree fruits, nuts, peanuts, and green beans from my diet. About a year ago I stopped drinking beer because it made me so bloated and usually made me run to the bathroom. I am pretty on top of limiting cross contamination, but I STILL have symptoms.

So what prompted me to see my doc was that in the past few months I have been chronically bloated to the point people at work kept asking me if I was pregnant and I stopped buying fitted shirts (luckily the trend is skinny jeans and peasant tops). I have also had an increase in the frequency of the big D. After I had the celiac panel drawn I opted to try cutting down on the amount of gluten containing foods and I have noticed a tremendous decrease in the bloating. I do still have digestive issues and started a food log to see if I can find the trigger. The other night I had regular (delicious) pizza and it resulted in stomach pain, immediate diarrhea, and diarrhea for three days after. (This might be TMI but it's almost undigested food/puke, sorry gross I know)

Also of note I frequently break out in rashes and saw a dermatologist but they are so inconsistent I am lucky if they are times right for my appointment. I feel like they just called it a dermatitis even though I haven't changed anything in my environment. Zyrtec has helped a bit but they still come and go. My skin is also the driest it has ever been despite trying to drink as much water as possible and moisturizing. Also despite zyrtec my ear canals itch like CRAZY.

I guess I am just kind of frustrated with the elimination of so many things in my diet and not definitively knowing. And also the digestive aspect of it. Any insight is appreciated as you seem like a solid community with similar experiences.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Do you have a copy of your tests?  You might not have needed the Total serum IGA if they did an IGA and an IGG version.  Some do it that way.

elizjk Newbie

They did the TTG Ab IgA, Gliadin, and Gliadin IgA.

No IgG.

elizjk Newbie

Also I should probably note I have been treated for depression (which I think was related to working night shifts and has more or less resolved), ADD, back pain since I was in my 20s, acne which is worse now than ever... And probably other stuff I'm forgetting.

Did you ever find symptoms coming and going? Should I ask for more testing/serum IgA... or to see someone in GI?

GF Lover Rising Star

The proper testing procedures for Celiac can be found here.

 

Open Original Shared Link

 

A rash can be DH, look at the pictures on the Dermatitis Herpetiformis thread.  When you get the rash again, take pictures to document.  Getting diagnosed can be really difficult.  If everything continues to be negative you may still be Intolerant.  Since you already have many food allergies, you may have developed more.  I hope your appointment with your Allergist yields some results for you. 

 

Good luck.

 

Colleen

  • 6 months later...
elizjk Newbie

In case anyone is curious, and perhaps for my own need to think outwardly in a forum that understands... my allergist was not helpful. He did recommend a vit d level which proved I was deficient. I ended up seeing GI who did an IgA level which was normal, but was otherwise not that helpful. I started a strict gluten-free diet in January and my GI symptoms have resolved (minus some difficulty while traveling which was not fun).

My fingernails are no longer shredding and my hair stopped falling out. My acne has improved and my overall rashy outbreaks have calmed.

I'm now considering going back on gluten and going back to GI to see if maybe they can scope me... But I feel so much better the idea seems almost crazy.

Also of note, both my brother and dad have extensive issues with inflammation of different parts of the GI tract. My dad's going to request a panel be done (he's also had iron def anemia, gerd, hypothyroid). I feel like there are some dots that need connecting and it's pretty frustrating.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748

    melindakathleen
    Newest Member
    melindakathleen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • 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...