Other Steps To Get A Diagnosis?

[londonamour]

Hello all,

 

I am in the processing of preparing my house to swap over to gluten-free (buying new cookware, eating up all the gluten food, etc.) and will be making the plunge into gluten-free-only in the coming weeks. Before I do that, I would like to have a confirmed diagnosis for either Celiac disease or non-celiac disease gluten sensitivity.

 

I had a blood test done on December 31 by my GP that came back negative. I had an endoscopy done by a GI that did a biopsy that also came back as negative. My GP's office has only dealt with patients who had a mild-sensitivity to gluten. My GI is not one listed on the celiac.org website.

 

My mother has confirmed Celiac disease. She carries a gene for Celiac as well as a gene for non-celiac disease gluten sensitivity. My sister has the same Celiac disease gene as my mom but a different gluten sensitivity gene and also is pretty sure she has DH (working on getting that diagnosed too). My father passed away 16 years ago, long before any of us had heard of Celiac, so we don't know if he carried another gluten sensitivity gene or a gene for celiac disease or anything else at all.

 

I have not had genetic testing done due to cost.

 

Earlier this month, I was diagnosed with endometriosis after an exploratory laparotomy. Once the 10" mass in my lower abdomen was removed, a lot of my GI issues (diarrhea, running to the bathroom immediately after eating, etc.) cleared up. However, we had Hardees for breakfast yesterday and I had some pretty intense abdominal pain shortly after. I've decided to go gluten-free for the endo because so many people with endo report a decrease in the intensity of endo symptoms. I'm also minimizing red meat, sodas, and processed foods for the same reason. (Hardees was just because we were on a time crunch to run errands first thing in the morning and we don't really have foods on hand that we can just grab and go.)

 

I have the foggy brain, abdominal pain, bloating, headaches, chronic fatigue, joint pain...some of which can be attributed to other medical issues I have (endometriosis, cervical spine problems).

 

I do not want to go through living gluten-free for a period of time and then having to go back on a gluten diet to get a diagnosis in the future. What else can I do to get a confirmed diagnosis on file in case it's needed in the future (work accomodations, etc.)?

[nvsmom]

Dr Fasano, a leading researcher of celiac disease, states that there should be 4 out the following 5 criteria met to get a celiac disease disgnosis:

1. Celiac symptoms (there are over 300)
2. positive blood tests: tissue transglutaminase (tTG IgA, tTG IgG), deminated gliadin peptides (DGP IgA and DGP IgG), endomysial antibodies (EMA IgA), total serum immunoglobulin A control test (IgA), and maybe the older and less reliable anti-gliadin antibodies (AGA IgA and AGA IgG).  You must be eating gluten in the 2-3 months prior to testing so don't go gluten-free if you want more tests.
3. positive endoscopic biopsy (or skin biopsy - I added that). You must eat gluten in the 2-4 weeks prior to the procedure.
4. positive genetic DQ2 or DQ8 (I've never heard of a gene for non-celiac gluten sensitivity)
5. positive response to the gluten-free diet

I personally think that having #1, 5 and either 2 or 3 is fine for a diagnosis.  I personally just had a couple of positive blood tests but it was definitely celiac disease.  

 

Anyway, those are your only options for a celiac diagnosis.  I would skip the genetic tests if I were you because they just tell you if you are in the 30% of the population which has the DQ2 and 8 genes that most celiacs have; it will not tell you if you have celiac disease, just if you have a 1 in 30 chance of getting it. A very small minority of celiacs have negative tests anyways.

 

There are no tests for non-celiac gluten sensitivity (NCGS) except a positive response to the gluten-free diet.  If your celiac disease tests are all negative, and you feel better gluten-free, THAT is a diagnosis right there.

 

Best wishes in whatever you decide to do.  And welcome to the board.  

[bartfull]

I never heard of a gene for non-celiac gluten sensitivity. If possible could you check with your Mom and sister to find out what that is?

[kareng]

  On 2/21/2015 at 5:43 PM, bartfull said:

I never heard of a gene for non-celiac gluten sensitivity. If possible could you check with your Mom and sister to find out what that is?

I agree. It seems that NCGI has many different reasons for it. Some, like a messed up gut - good bacteria to bad ratio, may not even be genetic. Until they figure out if NCGI is even its own separate and distinct disease, it would be hard to have discovered genes for it.

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