Accepting, adjusting...

[olgi]

Hi there

I am a52 yrs old female. About 20 months ago I realiced I was likely to be gluten intolerant. For decades I had suffered from night low abdomen pain, usually in the middle of the night, which I used to atribute to some bladder sensitivity after a surgery following a fistula. I laso had chronic low transferrin, insmonia and anxiety and depressiom symptoms usually in the middle of the night, overwhelming fatigue a couple of days a month that I would think was caused by stress, migraines, constipation and a chronic feeling of not beeing well. I stopped gluten almost completely and 3 mothns later I had Ig tested and came negative.

Then I kind of became more relaxed about excluding gluten and I had more symptoms, sometimes strong pain if ate something with gluten. Then last month I had my genetic test done and these were the results:

HLA-DQ2 (DQA1*02:01/DQB1*02:01) POSITIVE
HLA-DQ6 (DQA1*01:02/DQB1*06) POSITIVE

I assumed that means I actually am celiac, which I didnt expect and I am having a hard time to accept, being 52 it upsets me I didnt find out earlier.

Am I correct? Any thoughts suggestions or whatever?

Thanks in advance

Olgi

[Scott Adams]

Welcome to the forum!

A positive genetic marker, and in this case you have two markers that are positive, can only give you the probability of you developing celiac disease, but does not indicate one way or another whether or not you actually have it.

The only way to find out would be to have a blood test done (see below), and to do that you would need to be eating gluten daily for 6-8 weeks.

 

 

[olgi]

43 minutes ago, Scott Adams said:

Welcome to the forum!

A positive genetic marker, and in this case you have two markers that are positive, can only give you the probability of you developing celiac disease, but does not indicate one way or another whether or not you actually have it.

The only way to find out would be to have a blood test done (see below), and to do that you would need to be eating gluten daily for 6-8 weeks.

 

 

Thanks Scott for the quick reply. it scares me to go back to gluten for 6 weeks, there is not other choice then? I understood from my GP that with symptoms and genetics markers it was clear.

[trents]

Both the genetic marker and the symptoms are circumstantial evidence that you have celiac disease. If you want to find out for certain there would be no alternative but to go back on gluten. There is a blood anibody test for celiac disease and there is a test involving an endsocopy with a biopsy of the small bowel lining. Both require have been consuming gluten regularly for weeks or months in order to yield valid results.

The last I knew of the DQ6 gene was not associated with celiac disease. Did yo mean to type DQ8? But the DQ2 gene certainly is. Many people who have the genes for celiac disease never develop celiac disease. Having the gene just establishes the potential for it.

[Russ H]

This paper indicates that in combination with DQ2, DQ6 can increase positive predictive value by 50%. Looks like whoever is doing the genetic testing is on the ball in this case as it is a quite recent finding.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7785002/

[olgi]

Wow Thanks Russ, very very interesting indeed. I have both dq2 and 6. I live in Madrid, this was the test they offered me 

Warmly 

 

 

 

 

[Russ H]

23 minutes ago, olgi said:

Wow Thanks Russ, very very interesting indeed. I have both dq2 and 6. I live in Madrid, this was the test they offered me 

Warmly 

 

 

 

 

In some cases it is possible to be diagnosed without a positive antibody or endoscopy test. Certainly in the UK there are guidelines for this, and Spain is definitely more advanced than we are! This is based upon a genetic test and resolution of symptoms during a gluten free-diet under a specialist. Having a formal diagnosis is useful, if for example you were to be admitted to hospital and needed a gluten free diet, or for screening of close relatives. A chap I met has classic coeliac disease but self diagnosed and his GP is resisting having his son tested because he is not on the books despite having symptoms.

[trents]

1 hour ago, Russ H said:

This paper indicates that in combination with DQ2, DQ6 can increase positive predictive value by 50%. Looks like whoever is doing the genetic testing is on the ball in this case as it is a quite recent finding.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7785002/

Wow! That is a great find. Actually, by 55%. I think Scott and Jefferson should do an article on this.

Edited February 24, 2023 by trents

[olgi]

thanks again. my problem is I  dont dare to go back to gluten, really.

my GP, who is also a friend, told me with my symptoms plus those genes it was quite obvious i will need to go gluten free anyaways so i am trying to accept it.

this forum is really helpful now

[trents]

It's overwhelming at first but over time it becomes the new norm. The biggest adjustments have to do with the social limitations. These two articles might help you get off on the right foot:

Many people who claim to be eating gluten free are actually eating lower gluten because they have eliminated major sources of gluten but are not giving attention to CC (Cross Contamination).

 

[Russ H]

10 hours ago, olgi said:

thanks again. my problem is I  dont dare to go back to gluten, really.

my GP, who is also a friend, told me with my symptoms plus those genes it was quite obvious i will need to go gluten free anyaways so i am trying to accept it.

this forum is really helpful now

It can be very trying but on the positive side, it normally goes into complete remission on a strict gluten-free diet. If you look at all the other autoimmune diseases that people have and the Hell that they go through, we have it easy -  it could be much worse.

[olgi]

Thanks that is a very helpful thought right nos!

[SandraSt]

On 2/25/2023 at 11:00 PM, Russ H said:

It can be very trying but on the positive side, it normally goes into complete remission on a strict gluten-free diet. If you look at all the other autoimmune diseases that people have and the Hell that they go through, we have it easy -  it could be much worse.

Totally agree. It's understandable that you may be upset about not finding out earlier, but it's important to focus on the present and moving forward to manage your health.