A Few Questions About Testing

[Gladys Rabbit]

Hello, I am brand new here and this is my first post.

 

My story is probably very common.   I am in my sixties and the past year have had a lot of intestinal upsets and a pretty serious case of GERD.   When I was a child,  the home remedy for curing "the runs"  was to eat a lot of white bread and to cut back on fruit and veggies for the duration. I did this and  I got much worse.  Someone gave me a giant scone (since known as "The Scone of Doom") and that night I was quite sick. Between trips to the bathroom,  I did some Google searches on my symptoms and realized I had almost every symptom listed for Celiac,  even some of the odd-ball symptoms.    I quit gluten then and there and  my symptoms went away,  including the GERD.  What a terrific relief!

 

So I'm done with gluten and am adjusting very well to my new diet,  which I actually find myself enjoying.  But of course I don't know that I have Celiac,  I just have a very strong suspicion that I have it.   When I pass up bread and am asked why,  I, of course,  hesitate to say I have Celiac because at this point,  it's just a strong hunch.  So I say "gluten intolerance"  (which is certainly true enough) and I get eye rolls and "oh, every body has that nowadays,"  etc. etc.   Well that's ok,  I have a thick skin and can laugh along with them because before the Scone of Doom I felt the same way (forgive me.)

 

So should I get tested, do you think?  It means going back on gluten products again for six weeks,  I've heard?  I would rather put up with rolling eyes than endure that again.  And I just about faint dead away at the thought of an endoscopy (although I could tell 'em exactly where to take their sample,)

 

[cyclinglady]

Do you have any children? Celiac disease is genetic. So, your diagnosis would help others to get tested even if they are not displaying any intestinal issues (my symptom was anemia).

But if you choose to remain gluten free, you have to be very careful! Check out our Newbie 101 thread under "Coping" for tips that help uncover hidden gluten in processed foods, avoiding shampoos, lotions, lipsticks, etc and cleaning up your kitchen (no shared condiments, toaster, wooden spoons, plastics, etc.

Welcome to the forum!

[Gladys Rabbit]

Thank you, cycling lady.   I have already alerted family members to the potential problem.  I will check out the Newbie 101 page,  thanks.

 

Actually, this wasn't my first post after all, I just realized.

 

Thank you for the welcome.

[nvsmom]

You may want to discuss a diagnosis of "possible celiac" or non-celiac gluten sensitivity (NCGS) with your doctor just in case you need food accommodations in the future, like for a hospital stay - hospital food is usually not safe for us.  

 

Food accommodations is probably the only reason where you could need a diagnosis.  Some people find a diagnosis helpful in motivating them to stay strictly gluten-free - those with NCGS might not be as careful eating out as one with celiac disease must be.  For example, they may eat fries that were cooked with oil that may have been contaminated, or not sent back the plate of food with the bread on it ( they might just take the bread off instead).

 

If you aren't testing, you'll need to be as strict as a celiac or you may not recover properly.  One exposure (crumb) will set a celiac back by weeks.

 

You may want to consider requesting the genetic tests.  Over 97% of celiacs have the DQ2 or the DQ8 genes.  If you do not have those genes, then it is much more likely that you have NCGS rather than celiac disease.

 

Best wishes in whatever you decide to do.  

[Gladys Rabbit]

Thank you for your reply,  NVSmom.

 

  Quote

Food accommodations is probably the only reason where you could need a diagnosis.

 

 

This is the conclusion I have drawn as well.  I don't feel I have the "right" (so to speak) to say "I can't eat that,  I have celiac"  but I do think I can get away with "My doctor fears (for dramatic effect) that I have celiac."   My doctor will go along with this;  I know him.  He's one of those anti-grain people anyway.

 

I have a lot of mockers in my family.  They think I am onto a new fad.  I'd like to squelch that attitude, if possible.   For them,  "I have a gluten sensitivity"  won't cut the mustard.   

 

I am committed to a totally gluten-free life.  The before and after is just too dramatic to ever go back to gluten.  I am reading this site carefully so I can catch things I would not have noticed.

 

Thank you both for your replies.

 

-Gladys R,

[sbell91]

First visit to the forum today, after discovering my son has tested positive for Celiac yesterday (waiting on referral for biopsy to confirm). My dilemma is similar - I started cutting back on gluten over two years ago and discovered my headaches were virtually eliminated and stomach cramping I had been getting every few weeks for over 20 years disappeared. I saw no reason to get tested for celiac, because I knew I'd have to go back on a full-gluten diet, and if reducing my exposure made me feel better then why bother? My son's positive diagnosis got me researching, and I've learned some new things - that even though my body seems to tolerate small amounts of gluten (a cookie here, the last couple bites of my kids hotdog there), if I do have celiac then I'm doing serious harm to body without realizing it. So, given the genetic component to celiac disease, I've decided to talk to my doctor about getting tested, because I want to know if I should be cutting gluten out entirely and getting really strict with my diet (the increased risk of cancer scares me!). So maybe this would be a reason for you to get tested and find out for sure as well?

[nvsmom]

Ah, the mockers.... They usually shut up about it after they see you staying committed, and as your health improves.  Hang in there.  

 

Welcome to the board, sbell91.  

[kiwinomad]

"So should I get tested, do you think?  It means going back on gluten products again for six weeks,  I've heard?"

 

Hello all, can anyone comment on the above? I'm facing a similar decision and would like to know exactly how long I need to suffer to guarantee an accurate result?

[cyclinglady]

Welcome, Kiwi!

Here is a link from the University of Chicago:

Open Original Shared Link

Some celiac experts require 1 to 2 slices of bread or the equivalent but most agree to a 12 week challenge for celiac blood test.

[kiwinomad]

Thank you Cycling Lady!! Very helpful albeit a little daunting!