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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,914
    • Most Online (within 30 mins)
      7,748

    Momxiety
    Newest Member
    Momxiety
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.