Curious —need help deciding

[Stakei]

Myself and one daughter were diagnosed via blood then biopsy as Celiac 3yrs who. Another daughter’s blood has always been negative. However, since the house has been gluten-free for 3 years now her GI issues have decreased. She recently completed 5weeks of eating gluten daily and had a biopsy. Her biopsy is negative however genetic testing shows one of the gene markers (HQ2). Final report not available yet, but we are trying to determine if she should return to gluten-free as she probably is celiac or will become celiac. Her reaction to gluten is fairly severe but because she doesn’t have the ‘celiac stamp’ she feels like it’s probably fine to not worry about contamination issues or eat gluten when she really wants the item. She’s 18 and off to college. Needs to make her own decision on gluten-free or not, but she is curious of experiences of others. Thoughts? 

[frieze]

does she want to potential impair her body for the rest of her life?  does she want to potentially impair her fertility?

[Ennis-TX]

I was not diagnosed til other issues came up, wish I had gone gluten free much earlier when it was just digestive. This disease can evolve and cause other complications. I ended up with gluten ataxia, and it attacked my brain and nervous system, this effected my ability to do many complicated thought processes and made the stuff I studied for in college useless as computer programming no longer made sense like it used to. Nerve damage took away many delicate hobbies I had. Further immune issues gave rise to multiple food allergies, and a array of food intolerance and sensitivity issues. I have a entire list of stuff that makes me sick now that should not and my diet is very limited. Maybe if I had it diagnosed earlier and gone Gluten Free I could have avoided these.

If gluten makes her feel sick she should avoid it. There is Gluten free everything now days anyway ( I can not eat most of them now days with other issues)
 

[cyclinglady]

She is 18.  Some kids need to learn by experience.  It should not take her long to figure it out especially if she gets GI symptoms from gluten exposures.  

[OregonDonna]

TTG IgA for me was 218 (twice). Negative biopsy. Positive for one genetic marker. It's extremely confusing, my gastro did not give me the 'stamp' either. But the nutritionist I saw said I was Celiac and never consume gluten again. She was the most helpful of any of the docs I saw in convincing me I had the disease and to be my own best advocate. But I was 67 not 18 and heading for college. I was having so many intestinal issues at the time and knew nothing about gluten. My massage therapist had suggested going gluten free so I had been pretty much gluten free by the time they did blood tests. So imagine my surprise when the results were so high both times. It's been a year since going gluten free and I have no doubt the nutritionist was right. I hope your daughter does her due diligence before she heads off on her own. Good luck.

 

[GFinDC]

She should plan on repeat testing for celiac disease every 6 months or so.  She has one of the genes and is having GI symptoms from eating gluten.  The signs point to her having or developing celiac disease.  It is better for her health not to let her immune system reaction intensify.

What EnnisTX said is a good warning.  Having a constantly irritated and inflamed gut lining can lead to our bodies developing sensitivities to lots of different foods, besides just gluten.  So she is taking a risk of not being able to at many other foods besides wheat, rye and barley.

A sample list from my own intolerances is wheat, rye, barley, oats, strawberries, carrots, potatoes, tomatoes, eggplant, peppers, dairy (including cheese), celery, soy, raisins, wine,.  There's probably some I am forgetting.  Anyhow, there is no way to reverse these food intolerances once they develop.  Some people are egg or corn intolerant too.

The celiac genes are associated with other AI conditions also.  So there are forum members who have additional AI conditions that develop.  Triggering the genes may cause that to happen.  They call those associated conditions or related conditions.  We tend to to call that multiple AI conditions and no fun.

So, those are some things for her to think about.  It is less likely she will have those kinds of problems occur if she avoids gluten IMHO.