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

Gluten Sensitive


Terbie

Recommended Posts

Terbie Apprentice

After suffering years from various symptoms, my doctor tested me for celiacs (although I don't know which test he used, something with blood) and a wheat allergy. Both came back negative, but he told me to try a gluten free diet. After going on one for two weeks, I felt amazingly better. He said that I probably have a "gluten sensitivity" or "gluten intolerance" but I'm not really 100% sure what they means.

How strict should I be in my gluten-free diet? I've noticed that if I eat anything with gluten ingredients on the label (even maltodextrin), I feel horrible and I'm depressed for three days afterwards. I've been going gluten free for about 6 months and I'm never going back! I haven't felt this good in years!

I'm just wondering how strict I need to be in doing gluten-free foods? I keep seeing labels that say "natural and artificial flavors" and "manufactured in a facility that contains wheat" but I don't know if I need to stay away from them.

Is it possible that I have Celiacs and the test was wrong? I'm not even sure what the term "gluten sensitive" means and my doctor couldn't really explain it to me. I keep looking online for gluten-free things but everyone seems to have Celiacs and no one is really "gluten sensitive." What is happening in my body when I eat gluten that makes me feel so bad if it's not an allergy or Celiacs?!? Am I doing long-term damage if I eat something with traces of gluten?

Does anyone have any good resources for people who are gluten intolerant but don't have Celiacs?

Thanks for your help!


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



Celiac.com Sponsor (A8-M):



blueeyedmanda Community Regular

Maltodextrin is gluten free if made in North America.

You need to be very careful. CC is a big thing for celiacs. Crumbs from breads and crackers can make some members here very sick for days.

As for the processed in a factory with wheat, that falls back to personal choice. Some of us do, some of us don't.

Ridgewalker Contributor

You need to be just as careful as if you were diagnosed with Celiac. Gluten sensitivity isn't less serious than Celiac. It can come with all the same damage and long term problems.

hathor Contributor

Gluten sensitivity just means that the celiac damage hasn't taken place yet (it takes time), the test for celiac yielded a false negative (which happens a lot), or that gluten is damaging one's body (but in a different way than seen with celiac with its villi damage).

It is every bit as serious as celiac and has the same need for 100% adherence to the diet. This includes investigating things like flavors (celiac.com has lists of safe and unsafe ingredients, and those that need further investigation -- https://www.celiac.com/celiac-disease/safe-gluten-free-food-list-unsafe-foods-amp-ingredients/, checking out medicines, supplements & personal care items, and avoiding cross-contamination in your kitchen, at restaurants (we can but try :( ), and what we buy. You can't just go by those "processed" warnings, since they are voluntary. You can usually search online and see if folks have a problem with particular products or companies. I avoid the "processed on the same equipment" stuff and monitor my reaction to "processed in the same facility" food. But I monitor my reaction to about everything :rolleyes:

Since the diet is the same, you can use this board. Many of us are diagnosed gluten intolerant and don't have that "celiac" label. Mine comes from Enterolab testing and it is confirmed by my response to the diet.

I just read something about maltodextrin today on another board by a dietician who did some research. Apparently maltodextrin in foods regulated by the USDA instead of the FDA can contain maltodextrin made from wheat and that need not be disclosed on the label. The allergen labeling law only applies to FDA food. Whether there is much wheat maltodextrin in USDA food or this product still contains gluten, I don't know. I would link to this post but it is on a Yahoo group.

Of course, you can react to other things in addition to gluten. If maltodextrin makes you sick, don't eat it. It could be that you have a problem with MSG, which maltodextrin frequently contains. For a list of hidden MSG sources: Open Original Shared Link

Here is an article about the entire spectrum of gluten sensitivity and another about Enterolab and its testing that finds reactions before standard celiac testing:

https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

Open Original Shared Link

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    2. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

    3. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    4. - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    5. - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,828
    • Most Online (within 30 mins)
      7,748

    Ramona Stuart
    Newest Member
    Ramona Stuart
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • 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.