Celiac Risks Much Higher for First Degree Relatives of People with Celiac Disease

I am so thankful that my father, who died of lymphoma due to undiagnosed Celiac urged me to get tested.  I had absoluted no symtoms, but thought why not?  My new doctor basically ridiculed me, asking, "Why would you want to be screened for Celiac?  Don't you know you would have to go on a special diet?"  My response:  "Isn't it better to be proactive?"  She scoffed at me and I will never forget when she called me with the undeniable results that proved Celiac.  Of course I got the endoscopy too.  Thank God I found out because I caught it on the early side before there was much damage to my system.  I feel so fortunate because in our country Celiac is not on the radar of most medical doctors.  Doctors  do not do routnine screenings to rule it out like they do in countries like Italy.  The blood test is so simple.  I know it is not the gold standard, but it is a starting point that could help and surprise so many like it did for me.  Life on a gluten-free diet is really fine after adjusting to it for about a year.  It's been 14 years since I was diagnosed and I am so thankful that I tested when I did. Thanks to my dad who died way too young, still in his 60s.

Thanks for sharing, Amy CH.

This study concurs with the findings of another study done released about a year ago, done by the Mayo Clinic, that found 44% of first degree relatives of those who had been diagnosed with celiac disease had celiac disease themselves. Most of them didn't have a clue because they were largely asymptomatic.

I had no trouble getting my children tested, because they frequently complain about gastric issues, as do many children, but when I asked a doctor (at my consultant's suggestion) to test my parents it was not done because my parents had no obvious gastric issues.  And yet my poor mother had osteoporosis and suffered from anxiety.  I don't like battling against doctors, they have a hard enough job as it is, and I realise the NHS has so much else to deal with, but I just wish in the UK there was more awareness that an absence of gastric issues does not mean that someone is in the clear.

I was diagnosed 12 years ago in 2010 at age of 33. I had bloat, gas, bad cramps in left side, and what felt like a, smothering coal like, constant burning feeling that came up through my chest, (different feel from heartburn). I thought I had some kind of cancer by the time I went to see my doctor about it, (dealt with it for a year, as it gradually got worse). I had blood work and an endoscopy which all came back super positive. Finding out it was genetic I told my over weight sister about it, (she had intestinal issues since I can remember). The Dr. told her because of her weight it was unlikely she had celiac but went ahead and tested her. She was also positive for Celiac. It makes me a little mad now because when we eat together she will say things like, “I think you are more sensitive than I am because I can eat gluten once in awhile and feel nothing.”  Grrrrr! I myself strictly stay away from gluten and contamination because I know that even if you feel nothing you are still doing damage to your body. I just do not know how to get that through her head. Also I wish my mom and now passed dad would and would of got tested. I feel like piece of mind that they are healthy as can be is a great thing, but because of no symptoms they do not feel need of tested. (My dad who just passed at 89 yr old, had tremors that Neurologist  said was not Parkinson’s and he was super rigid the last 2 years which left him wheel chair bound. I kind of have to wonder if this was due to possible malnutrition based on having undiagnosed Celiac. 

My daughter was diagnosed 9 years ago at the age of 11.  Took 11 years to get that diagnosed!! She always had issues. Anyway turn out I al The generic carrier ans one of my other 2 children also has the gene for it. It was explained to me that we should have blood work to screen for celiac every year or sooner if we have issues because it could become active at any time in our system.  Does this sound like reliable information and protocol to you? Should we be doing anything different? What type of cancer lymphoma come from celiac? My mother now deceased from lung cancer also had non Hodgkin lymphoma. She was never tested for celiac. 

@WandaC, that seems like reasonable advice except for the part about waiting to be screened until "until we have issues". I take that to mean you are saying if you start having symptoms. Perhaps the main point of the research article is that you don't want to wait until you start having symptoms because by then the damage to the small bowel lining and other body systems can be significant. A more proactive approach would be to schedule regular testing, maybe yearly, if your insurance and medical system will allow for it. If not, there are home test kits available from companies like Imaware for around $100 USD.

Small bowel lymphoma rates are definitely higher in the celiac population than in the general population. The rate is still low, meaning the chance of a celiac getting SB lymphoma is pretty low, but it is higher than in the general population. If I recall correctly, it is 4x greater but don't quote me on that.