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Curious —need help deciding

Stakei

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Stakei Newbie
Stakei
Posted

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? 

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frieze Community Regular
frieze
Posted

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

Ennis-TX Grand Master
Ennis-TX
Posted

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 Grand Master
cyclinglady
Posted

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 Rookie
OregonDonna
Posted

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 Veteran
GFinDC
Posted

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.

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    • Scott Adams
      Waiting on Blood test results…

      By Scott Adams · Posted

      It looks like they will now order the Tissue Transglutaminase IgA Antibody test, but verify this with your doctor.
    • trents
      Reaction to gluten or gastro bug?

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    • cristiana
      Reaction to gluten or gastro bug?

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    • Beck1430
      Reaction to gluten or gastro bug?

      By Beck1430 · Posted

      Hi there, I'm looking for some advice for my 2 year old. After he turned one he started eating more foods like pasta and breadsticks and our supermarket finally started to stock a soy free bread (he has an intolerance to dairy and soy) so he started eating bread for the first time.  He began having foul, loose nappies, which I assumed must be teething, but this went on and on for a couple of months. Coupled with that, he started having patches of red scaly skin, a little bit like eczema but more widespread. He was also very tired and quite miserable. Given that it all coincided with him starting to eat a lot more gluten, his dietician recommended I eliminate gluten to see what happened. His poos immediately changed back to normal and were finally formed, and he’s been off gluten since last summer.   Fast forward 6 months and we did a wheat challenge yesterday, giving him a small breadstick at about 11am. He seemed ok through the day but 11pm he woke up vomiting, and was sick 3 more times over the course of 90 minutes and was writhing in pain on the floor crying about “poo” which never came, and today he has done a normal poo.  My two questions are: Is it possible that this was a reaction to the gluten if it came 12 hours after ingestion? Or is that too long to cause vomiting? I wonder if it’s more likely an unrelated bug but can’t work out where from as we’ve had a quiet week. Would there not be loose stools too if it was a reaction to gluten? Before going gluten-free, this was his main symptom!   If it could be the gluten that caused this, where do we stand with ever testing for coeliac? Now that I know more about the testing I don’t know why his dietician didn’t recommend we do that before removing it from his diet before. Seems cruel to make him ill for the sake of a test. Grateful for any pointers or advice. Thank you!   
    • ChrisSeth
      Waiting on Blood test results…

      By ChrisSeth · Posted

      Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.
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