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Do I Really Need To Keep Eating This Way?

jjc

By jjc
in Coping with Celiac Disease

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jjc Contributor
jjc
Posted

I have been (mostly) gluten free for the last 6 months, and before that have been gluten free for about a year and a half. I first started when my daughter had slightly above normal blood tests (but nothing showed on her endoscopy). So we both did Enterolab testing and hers was pretty high (50), while mine was a 20 on a scale starting at 10 being normal. Our DNA testing did not show celiac genes, but we each had 2 genes indicating gluten intolerance. My daughter truly gets ill eating gluten and has remained 100% gluten free ever since.

I, however, do not get sick, and only felt slightly sick after eating gluten for the first time after a year of being free of it. My blood tests, per the doctor, are normal. I'm sure if I had an endoscopy it would be normal as well. I originally went gluten free only because of the Enterolab test and now I'm doubting that I need to do this.

Are the Enterolab tests really enough to go on all by themselves? I don't want to hurt myself even if I can't feel that I'm doing it!

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FooGirlsMom Rookie
FooGirlsMom
Posted

Well...

The problem with Gluten Intolerance is that if you truly have it, your body could be making antibodies against the gluten and swirling around in your system. It can take some time for you to notice the results of an auto-immune attack. You may not notice it for months or years. At least until you develop a seemingly unrelated illness like arthritis, fibromyalgia, insulin resistance, headaches, unexplained weight gain, being more tired than normal, vitamin deficiency, cancer, thyroid problems, etc. See, not everyone has gastrointestinal issues with gluten. As an example, those were the least of my troubles and weren't always an issue. The other problem however, plagued me in various forms all my life from age 19 or so (I'm almost 43 now and have just had 2 of the sickest years of my life - thought I was dying - seriously)

That's the frustrating part about gluten intolerance. It can masquerade as 100 different things when your body goes haywire. And usually you are really sick by the time you notice. And once one thing starts, the body being a system, sometimes it feels like everything is breaking down at once.

I guess it boils down to the risk you are willing to take & how convinced you are that you will be symptom-free. Gluten is easier but it's not necessary to a healthy life. If I had your lab results in hand, even not being symptomatic, I, personally, would steer clear of it. I know first-hand what this little thing called gluten (which lurks everywhere it seems) can do to your body. Quality of life would take precedence over a pizza. Not only that but your example and support to your daughter will keep her on the straight & narrow. As a mom of 2 kids -one in college and one 9.5 - I'd go gluten-free if it was just for their sakes alone. They wouldn't feel so alone & know you were suffering & supporting with them.

FooGirlsMom

starrytrekchic Apprentice
starrytrekchic
Posted

I would do a gluten challenge, if I were you. Set it up with your doctor so that you eat gluten every day for 6 weeks, then go in for blood tests and/or an endoscopy. You'll need to have those six weeks of gluten eating for the results to be accurate.

hazelbrown10 Rookie
hazelbrown10
Posted

If you decide to do a gluten challenge, I'd recommend maybe even more than 6 weeks. I did one that was 6 weeks and my antibody levels were were still negative, but slightly higher than when I had them done before. I don't know what to make of that - it could just be a fluctuation in the testing...? I have no idea. But if you want to have the most accurate tests, the longer the better (for the tests, prob not for you!).

ravenwoodglass Mentor
ravenwoodglass
Posted

I would do a gluten challenge, if I were you. Set it up with your doctor so that you eat gluten every day for 6 weeks, then go in for blood tests and/or an endoscopy. You'll need to have those six weeks of gluten eating for the results to be accurate.

You could consider a challenge but keep in mind that gut symptoms are not the only symptoms of problems with gluten. It can effect mood, joints etc. Also make that challenge 3 months to be on the safe side. You should also keep in mind that celiac used to be considered to be something children would outgrow. We now know that isn't the case. It can be a long 'honeymoon' before the symptoms rear their ugly head but for most they will.

sahm-i-am Apprentice
sahm-i-am
Posted

It is hard to know what to do when tests come back and you aren't sure. Go with how you feel, but give the diet time.

I have no symptoms when I eat gluten yet I know it is doing damage internally. I have to put on my girl panties and be an adult, staying far away from gluten. But I have confirmed blood work, you don't. I would do the challenge and get retested. Ugh! I feel for you.

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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?

      By trents · Posted

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    • cristiana
      Reaction to gluten or gastro bug?

      By cristiana · Posted

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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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