Jump to content
  • Welcome to Celiac.com!

    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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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. - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    2. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    3. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    4. - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

    5. - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,122
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.