Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Do I Really Need To Keep Eating This Way?


jjc

Recommended Posts

jjc Contributor

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



FooGirlsMom Rookie

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

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

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

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

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

    2. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

    3. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

    4. - AutomatedGlutenEjector commented on Scott Adams's article in Latest Research
      71

      COVID-19 a Possible Trigger for Celiac Disease in Those with Genetic Risk

    5. - akebog posted a topic in Gluten-Free Restaurants
      0

      Fusilli Pizzeria, Miller Place, NY

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,062
    • Most Online (within 30 mins)
      10,442

    AutomatedGlutenEjector
    Newest Member
    AutomatedGlutenEjector
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    • akebog
      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
×
×
  • Create New...