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
      130,346
    • Most Online (within 30 mins)
      7,748

    Thomas D Cosgrove
    Newest Member
    Thomas D Cosgrove
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • 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

    • knitty kitty
      @Ginger38, Diabetes and Celiac often go hand in hand.  Having more than one autoimmune disease is common with Celiac.  I'd err on the side of caution and go gluten free.   I did not want to go on insulin, either.  I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  My diet now does include carbs.   We're supporting you through this difficult time.  
    • knitty kitty
      @Ginger38,  I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum!  My doctors were just as frustrating!   I had nutritional deficiencies.  I know your doctors refuse to test for this.  So did mine, saying "I can't make money prescribing vitamins."  Some members say a naturopathic doctor is more open to testing for deficiencies.  Remember not to start supplementing until after testing is done.  Otherwise the supplements will raise your blood levels falsely.   I had studied Nutrition at university, so I decided to supplement essential vitamins and minerals.  A B Complex, extra Thiamine (Benfotiamine) for the diabetes, magnesium and Vitamin D are the supplements I started with.   The B vitamins are water soluble so any excess is excreted easily.  Thiamine even in high doses is safe and nontoxic.  Diabetics lose more thiamine in urine because of weird kidney stuff.   I wanted to get my blood glucose levels under control because gluten free foods made my level spike for long periods, too.  I absolutely did want to go on insulin.  Once you do, the pancreas stops making it.  Very scary.  Best to help the pancreas function with thiamine in the form Benfotiamine. I began the low histamine version of the Autoimmune Protocol Diet (developed by Dr. Sarah Ballantyne, A Celiac herself).  It's a low carb, very strict diet at first, then expanded.  I considered it similar to feeding a sick baby.  You don't give hard to digest foods to a baby.  You give easily digestible foods.  This allows time for the gastrointestinal tract to calm down and heal.  Symptoms started to calm down quickly.  With the vitamins, I started feeling much better.  My blood glucose levels stabilized.  I did not go on insulin.  I do not take anti-glycemic pharmaceutical drugs like Metformin.  Just diet.  You're making the right decision to live as a Celiac.  Your body is telling you clearly.  You can get through this.  You're strong and you're fighting for yourself and your baby.  Good job!  You have the Tribe behind you!
    • maryannlove
      Though trying to diligently eat gluten free, recent bloodwork was bad so searching for culprits.  Eat lot of (preferably mixed) nuts.  Most allergen labels say may be processed on equpment that also processes wheat, etc.  Finally found ONE kind (unsalted mixed) at BJ's.  Wessley (their store brand) that did not contain that warning.  Says in large letters "A GLUTEN FREE FOOD."  Well, all nuts are a gluten free FOOD!  Have been eating and now wonder if this is intentionally decieving.  So stopped eating until find culprit.  Nuts are so good for protein and fiber (especially if trying to not eat meat).  'Tis so frustrating.  Thanks to above, I'll look into Tierra Farms.   
    • somethinglikeolivia
      Fascinating! This was very helpful, thanks for sharing
    • maryannlove
      Despite being very diligent about eating gluten free, my recent bloodwork was bad.  So been on a mission to find the culprit(s).  During Covid my daughter found "certified gluten free" Yasso mint chocolate chip yogurt bars at Costco.  I was elated and have been eating them since.  When delving into possible culprits I discovered that the boxes with 12 bars at both Costco and BJ's no longer say "certified gluten free."  But the boxes with 4 bars at groceries and Target still say "certified gluten free."  Contacted the manufacturer and was told to go by what the box says.  So guess different machinery is used.  Was also told they were in the process of changing boxes.  Will be interesting to see what that brings.  
×
×
  • Create New...