Jump to content
  • 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

Nicki Raeleen

Recommended Posts

Nicki Raeleen Rookie

I'm 19 years old and I have been diagnosed for about 4 years now. Everything had been wonderful following the gluten free diet until 8 months ago. I began to get all of my GI symptoms back and new ones. My skin broke out in rashes, my skin around my lips are so chapped they bleed and my scalp is peeling. Nothing is my life style has changed. After numerous doctors, one came up with the idea that my body never stopped producing antibodies, therefore giving me these symptoms. I am now being put on immunosuppressants. This has really hurt me emotionally with how I look and physically.

does anyone have this? Or even ever heard of it? If so, is there advice you would give me. I'm a bit frighten for my health. ??

 


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Did the doctor run another celiac panel to see if you have elevated antibodies? If not, ask him to do so before you even consider immune suppressant drugs. They can have really nasty side effects and should only be considered as a last resort. (I know this after talking to my doctor about them. I have lupus and he would only consider prescribing them if my liver, kidneys or lungs were under attack and steroids didn't work to stop it.) Google the side effects and you'll see what I mean.

It is also possible that you've developed an intolerance to something else. Corn, soy, dairy, and nightshades are common culprits. An elimination diet, although restrictive and seemingly endless, is your friend. I'd much rather spend six months eating plain, bland foods than take dangerous drugs.

Nicki Raeleen Rookie

This a new this doctor (my old one sucked) did a new full panel b4 and after my food log and my number are still really high.... My sister has chrons so I no how nasty these drugs can be. 

Unfortuanlly having an intolerance to something dose not really make your antibodie level rise. They will make others like neutrophil (witch are a type of white blood cell) but not tTg and IgG. 

bartfull Rising Star

OK, so it's time to rethink what you've been eating. Maybe something you've been safely eating all along has now changed ingredients. It happens all the time. They may now include either a gluten grain or something that is cross-contaminated. I constantly preach that we must read every single label, every single time we buy something. I have bought two of the same item at once and the ingredients are different on one of them because they came from a different batch. (I know that's rare, but it did happen to me once with ice cream. The older container had no guar gum but the newer one did.Not that guar gum has gluten, but you see what I mean.)

Anyway, as I said, I often preach about label reading and yet even I have bought an old standby without reading the label when I was in a hurry. Shame on me.

And rethink your habits. Is there someone new in your life that may be unwittingly contaminating your food? Or a new love in your life whom you kiss before this person thoroughly brushes their teeth? Go to the newbie 101 thread in the coping section to see some of the other surprising ways one can get glutened.

It may sound like I'm grasping at straws here but I seriously doubt it would take three plus years for symptoms to crop up if your antibodies had never gone down.

Nicki Raeleen Rookie

 I understand that, and I am doing a food log. But even my doctor agrees something out of the ordinary is going on. 

My doctor is prescribing them to me, my question was wither or not someone else was having this done. 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    2. - chrisinpa commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    3. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    5. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,498
    • Most Online (within 30 mins)
      7,748

    HDM005
    Newest Member
    HDM005
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.