17 replies to this topic

[JohnS]

I gave you a link. Trying not to diagnose you or scare you but - get your liver checked. Get checked for other AI diseases. Chron's? Colitis? I'm sorry. It's highly unlikely you have Celiac. What was the result of your colonoscopy biopsies? That is likely your problem.

Colonoscopy done earlier this year, one small polyp removed, biospsy neg.

 

Blood test and ultrasound done for liver as part of abdominal US.  All normal.   No GI doc has even mentioned Chron's or UC.  IMO, I may have SIBO, due to previous antiobiotic issues previous to all this starting.  I know when I take an antibiotic, things get better.  When I take a probiotic, get very bloated.  I have told the docs this, in one ear out the other. 

[Renaye]

I am scheduled to see a new gastro this week as my old one decided to leave so I will ask him and work with him on the insurance. I remember that day that they took 13 vials of blood from me. Everything else was readable. You never know. Here I kept thinking that I had something else wrong. Wish me luck and thank you!!

Renaye

[Ninja]

One thing that always amazes me about the gene test is most experts say 97% of celiacs have DQ 2 or 8.

 

Which means 3 percent of celiacs don't have either one!

 

And yet doctors always act as if a negative gene test is proof you don't have it. Since I'm DQ9, I often wonder if I'm just one of the 3 percenters.

 

I've wondered this too! In all the literature I've read, it is extremely rare for a person to develop celiac without a variation of DQ2 or DQ8. However, the individuals in those studies were tested for all variations of the genes and both alpha and beta units on each loci. It is very unusual to stumble across a doctor who orders that thorough of a genetic test. It seems they either look for DQ2.5 on the alpha side and DQ2, DQ8 on the beta, or just the beta or just DQ2.5 and not DQ2.2. So, from my research, there appears to be some disharmony in the percentages that the studies give and what specificity of tests are used in practice.