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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748

    Lostcha
    Newest Member
    Lostcha
    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

    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.