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

help with test results.


g-wheels

Recommended Posts

g-wheels Newbie

to start off i have had about 11 of the symptoms of the gluten allergy for about 10 years .

i had no idea what was causing it till i had a relative come over and they told use they

could not eat gluten . i did not even know what it was . they explained and got me to researching .

so i ordered a test through quest diagnostic for a gluten test the results i got from there blood test only had this :

 

Quote

ALLERGEN GLUTEN IGG                    RESULT = 15.6      FLAG=HIGH    REF RANGE= <2.0 MCG/ML

i started a gluten free diet and started feeling much better after about a week .

after 2 week i decided to see my doctor .

I ASKED MY DOCTOR ABOUT THE RESULTS AND THEY SAID IT DID NOT MEAN ANYTHING AT ALL .

doctor asked me to eat gluten again for a week and come back for a test since i was gluten free for 2 weeks .

so the doctor orders a celiac panel so they called it .

the test results was like this

Quote

IgA mg/dL  = 343

Endomysial IgA = Negitive

TTG IgA U/mL =  <2

i also notice that on my regular blood test that

Total Cholesterol mg/dL = 103

Triglycerides mg/dL = 248

i have read somewhere that the high triglycerides can be caused by gluten also .

so now my doctor says that i dont have

 

gluten sensitivity

Gluten alergy

or Celiac...

 

should i find another doctor ?

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
3 hours ago, gurusonwheels said:

to start off i have had about 11 of the symptoms of the gluten allergy for about 10 years .

i had no idea what was causing it till i had a relative come over and they told use they

could not eat gluten . i did not even know what it was . they explained and got me to researching .

so i ordered a test through quest diagnostic for a gluten test the results i got from there blood test only had this :

 

i started a gluten free diet and started feeling much better after about a week .

after 2 week i decided to see my doctor .

I ASKED MY DOCTOR ABOUT THE RESULTS AND THEY SAID IT DID NOT MEAN ANYTHING AT ALL .

doctor asked me to eat gluten again for a week and come back for a test since i was gluten free for 2 weeks .

so the doctor orders a celiac panel so they called it .

the test results was like this

i also notice that on my regular blood test that

Total Cholesterol mg/dL = 103

Triglycerides mg/dL = 248

i have read somewhere that the high triglycerides can be caused by gluten also .

so now my doctor says that i dont have

 

gluten sensitivity

Gluten alergy

or Celiac...

 

should i find another doctor ?

 

Welcome!

Lesson learned, try not to diagnose yourself (or order labs) until you have a clear understanding of what you are doing.  I went on Quest and could not even find the initial test you took (though I might have missed it).  What Quest Diagnostics did say is that that you should work with a doctor and if the screening TTg and EMA are negative, you should consider getting  the DGP.  

Open Original Shared Link

So, I would ask your doctor (based on what Quest stated) that since you had a negative TTG and EMA could he/she run the DGP IGG and DGP IgA.   The tests your doctor gave you are good but do not catch all celiacs.  It is worth the extra $100 (or so) to find out.  Why am I pushing the DGP IgA?  It is the ONLY celiac test I test positive on even on follow-up testing to check for dietary compliance.  

And there is more.  I had super low total cholesterol and all my doctors over the years applauded me.  But low is just as bad a high!  It may mean you are not absorbing good dietary fats which is another sign of celiac disease or disorders affecting malabsorption.  Your triglycerides are super high.  I am not a doctor, but I would bet your diet is full of sugars (sodas, fruit juice, desserts, etc.)  I could be wrong....so let me know!   Did your doctor check you for fatty liver or measure your blood glucose?  

So, see if your doctor will work with you or get another one.  And...research and become a good advocate for your health!  

Good luck and take care!  

 

frieze Community Regular

if you were really good on the gluten free diet, a week back on gluten was not enough.  8-12 weeks is the recommendation.  and, get the whole panel 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

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

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

    • Total Members
      132,912
    • Most Online (within 30 mins)
      7,748

    journaljenny
    Newest Member
    journaljenny
    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

    • 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.