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decclj
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decclj Apprentice
decclj
Posted
  • Author

Yes but I haven't been diagnosed the doctor has put on my records gluten intolerant

  • 2 weeks later...
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decclj Apprentice
decclj
Posted
  • Author

Doctor referred me to a dietitian they now want me to go on a gluten diet and have another biopsy  or have a genetic blood test I said I can't go on a gluten diet it makes me feel so sick so I opted for blood test .do you have it done at doctors or hospital ?

frieze Community Regular
frieze
Posted

the gene test is not worth a whole lot.  It will not dx you, unless the doc is willing to go on a positive there, and dietary response.  and if your gene test is negative for the two that they test for, it does not mean you are not celiac.

  • 2 weeks later...
decclj Apprentice
decclj
Posted
  • Author

Can someone tell me how they do the HLA DQ2/DQ8 genetic test

kareng Grand Master
kareng
Posted
5 hours ago, decclj said:

Can someone tell me how they do the HLA DQ2/DQ8 genetic test

For the patient , it is a simple blood test usually.  If you want to know more about how they process the blood and "count" the chromosomes, I would suggest you ask the testing company.

 

decclj Apprentice
decclj
Posted
  • Author

How do you get the HLADQ2/DQ8 genetic test done ?

cyclinglady Grand Master
cyclinglady
Posted

In the US, you can ask your doctor and hopefully, insurance will cover it.  This article explains US options:

https://www.verywellhealth.com/genetic-testing-celiac-disease-562709

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decclj Apprentice
decclj
Posted
  • Author

What happens if your not in the us with genetic testing

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, decclj said:

What happens if your not in the us with genetic testing

You can ask your doctor or you can search online for a lab.  However, I do not think you can order medical tests as a patient on your own in the UK.  

cyclinglady Grand Master
cyclinglady
Posted

You had a very elevated TTG (over 100) but a negative biopsy. I think your doctor recommended going  gluten free, correct?  Please consider the diet.  It may provide you with the reassurance that gluten is making you ill and odds are you have celiac disease.  The problem is it takes time to learn the diet and heal.  Most forum members take a year to get well.  That is hard to do when you are not confident that you have celiac disease.  Why give up all that bread for a year?  Seems like a huge gamble!

My husband was advised to go gluten free 18 years ago.  He was never tested for celiac disease.  The first year was hard.  He cheated.  Mistakes were made.  Eventually, he realized that he liked feeling well.  If he consumed gluten it would wipe him out for a week.  In fact he said that he felt like had the flu for a decade!  Gluten was not worth it.  Since then he has never cheated ever.  He has been glutened occasionally over the past 18 years, but not intentionally.  In fact, because I am so careful, he realizes that he might have taken too many risks.  Now, he eats out at only dedicated gluten-free restaurants or ones highly recommended by celiacs.  He would rather eat food obtained from the grocery store than risk eating out.  

Please give the diet more time.  See a dietitian and consider joining a local support group.  It is so nice to meet and have safe food to eat and be surrounded by  like people.  

 

decclj Apprentice
decclj
Posted
  • Author

I was. Referred to a dietitian but  she noticed before I had my biopsy I wasn't on gluten long enough so has given me the option of going back on gluten and having another biopsy or a gene test so opted for genes test so now waiting

frieze Community Regular
frieze
Posted

but the gene test is NOT going to r/o celiac!

  • 1 month later...
decclj Apprentice
decclj
Posted
  • Author

How long does the results of the genetic blood test take to come back

kareng Grand Master
kareng
Posted
2 hours ago, decclj said:

How long does the results of the genetic blood test take to come back

Mine took about a week.  Usually, in the US, 1-2 weeks

Beverage Rising Star
Beverage
Posted

If you get the DNA test, be sure all celiac genotypes are included in the test, not all of them include anything other than DQ2 and 8, but that's not all that can get you Celiac's Disease.   I tested negative for DQ2 and 8, but positive on HLA-DQB1*02 which is a much lower chance of developing the disease, but I developed it anyway.  I got my test done through Genetrack Biolabs, done through the mail to Canada.

  • 2 weeks later...
decclj Apprentice
decclj
Posted
  • Author

Can someone tell me how long the genetic blood test takes to come back it's been over 2 weeks

kareng Grand Master
kareng
Posted
2 hours ago, decclj said:

Can someone tell me how long the genetic blood test takes to come back it's been over 2 weeks

In the US, it is usually less than 2 weeks.  But with Christmas, it might be a day or 2 longer.  If the results are going to the doctor & the doc has to review them first- that could add sometime on, too.  I would call and ask.

Beverage Rising Star
Beverage
Posted

How did you get the test done?  Through your doctor?  On your own through an internet site?  I went with a company in Canada and it took almost a month.

decclj Apprentice
decclj
Posted
  • Author

I had it done at hospital but gets sent to another hospital for testing

  • 4 weeks later...
decclj Apprentice
decclj
Posted
  • Author

I had a genetic test it says I do have the genes so what does it mean with a  high ttg as well

Beverage Rising Star
Beverage
Posted

Hi, decclj.  For me, I did not want to go with the endoscopy because I just did not want to do the prep and I hate getting knocked out.  In the US, my doctor was able to give me an official diagnosis of Celiac's Disease based on these 3 factors:  1) positive blood screening test  2) celiac gene in DNA test  and 3) response to the gluten free diet (felt better almost immediately and lost 30 lbs. of water weight / inflammation).

decclj Apprentice
decclj
Posted
  • Author
On 11/16/2018 at 10:46 PM, cyclinglady said:

You had a very elevated TTG (over 100) but a negative biopsy. I think your doctor recommended going  gluten free, correct?  Please consider the diet.  It may provide you with the reassurance that gluten is making you ill and odds are you have celiac disease.  The problem is it takes time to learn the diet and heal.  Most forum members take a year to get well.  That is hard to do when you are not confident that you have celiac disease.  Why give up all that bread for a year?  Seems like a huge gamble!

My husband was advised to go gluten free 18 years ago.  He was never tested for celiac disease.  The first year was hard.  He cheated.  Mistakes were made.  Eventually, he realized that he liked feeling well.  If he consumed gluten it would wipe him out for a week.  In fact he said that he felt like had the flu for a decade!  Gluten was not worth it.  Since then he has never cheated ever.  He has been glutened occasionally over the past 18 years, but not intentionally.  In fact, because I am so careful, he realizes that he might have taken too many risks.  Now, he eats out at only dedicated gluten-free restaurants or ones highly recommended by celiacs.  He would rather eat food obtained from the grocery store than risk eating out.  

Please give the diet more time.  See a dietitian and consider joining a local support group.  It is so nice to meet and have safe food to eat and be surrounded by  like people.  

 

 

decclj Apprentice
decclj
Posted
  • Author

I have finally got my coeliac diagnosis after having a positive gene test for both genes doctor called me in this week has referred me to dietitian

cyclinglady Grand Master
cyclinglady
Posted

So glad that you received your diagnosis.    Now you can focus on healing!  Remember, it takes time.  ?

decclj Apprentice
decclj
Posted
  • Author

Thankyou 

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