Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Newly gluten free and need help!

mrsburnssassin
 Share

Recommended Posts

mrsburnssassin Newbie
mrsburnssassin
Posted

Hello Celiac Community,

I am newly diagnosed and attempting to transition to a gluten free lifestyle (it’s hard!) I have a few upcoming trips that were planned long ago, one includes staying at a friends home for a week. Although she is being very sweet about accommodating me, I know that I can’t realistically eat packaged foods for a week and that I’ll inevitably be exposed to gluten. My concern is that I heard from most people that getting glutened is a lot worse the longer you are gluten-free. Although I want to maintain my gains thus far, I wonder if I should introduce small amounts of gluten prior so I won’t be sick while I’m there? Also, wondering what Celiac parents have done in regards to getting their children tested. Thanks in advance to all. 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, mrsburnssassi!

Have you been officially diagnosed with celiac disease or NCGS (Non Celiac Gluten Sensitivity) and how long ago? How long have you been working at your gluten free diet? The length of time you have been gluten free or at least approximating it is an important consideration in your question about losing tolerance to gluten ingestion.

mrsburnssassin Newbie
mrsburnssassin
Posted
  • Author

Hi and thank you! I was diagnosed with Celiac Disease about a month ago and have been mostly gluten free except some trace amounts since then. The trips will be 2 and 3 months gluten free respectively. I also had extremely high antibodies >250 and Marsh 3b intestinal damage, so I believe my illness went undetected for quite some time. 

trents Grand Master
trents
Posted

What happens now if you accidentally get some gluten? How do you react? Can you differentiate between when you get a trace as opposed to a larger amount?

mrsburnssassin Newbie
mrsburnssassin
Posted
  • Author

Hi, usually I get very bloated and lots of neurological issues (neuropathy, ataxia, migraines, dizziness) when I was full on eating gluten. Now, with trace amounts, I see a little bit of bloating and some dizziness and numbness but it’s much more mild and goes away faster. Although those symptoms are bad, they were what I was used to dealing with for multiple years. My concern is that I may develop something more debilitating, such as vomiting or more intense GI issues now that I started cutting gluten out.

 

trents Grand Master
trents
Posted

There is no way to predict what will happen now. My suggestion is to communicate with the cooks while you are away to avoid getting glutened as much as possible. In restaurants, tell the waiter you have a medical condition that demands you avoid gluten and then order stuff that is least likely to have gluten. As far as covering yourself for trace exposure, consider ordering some GliadinX. Scott Adams and many others on this forum are convinced that this product gives them coverage for cross contamination events such as you commonly experience in restaurants. In the interest of full disclosure, GliadinX's creator is a sponsor here on celiac.com. https://www.amazon.com/GliadinX-90-Capsules-Scientifically-Proven/dp/B07B9S7PD2/ref=sr_1_1?crid=2FNG8VR0CMBXT&keywords=GliadinX&qid=1696453644&sprefix=gliadinx%2Caps%2C134&sr=8-1

mrsburnssassin Newbie
mrsburnssassin
Posted
  • Author

All wonderful information, thanks a bunch! 

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,554
    • Most Online (within 30 mins)
      7,748
    Cat M
    Newest Member
    Cat M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Is "Shield" skincare products gluten-free?

      By trents · Posted

      @LynnM, when you say, "today, his numbers were high", what numbers do you refer to? Are you speaking of celiac antibody scores? Can you be more specific and can you post the test names, the numbers and the reference ranges for the tests? So, I am understanding you to say that topical exposure to gluten doesn't cause him GI reactions but ingestion of gluten does but at the same time you are attributing the "high numbers" to the topical exposure?
    • Ginger38
      Abnormal Labs, Should I Be Concerned?

      By Ginger38 · Posted

      So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done damage or something this past year 
    • LynnM
      Is "Shield" skincare products gluten-free?

      By LynnM · Posted

      Thank you Scott. My son doesn't have a reaction topically, only when ingested. Interestingly though, the doc told us the face cream getting gluten into his bloodstream doesn't do the damage akin to when gluten is ingested. He had no reaction when using the face cream, it only presented in blood-work. I'm hopeful from all the comments today and will wait for the GI doc to reply. If he is cleared to use it, I will encourage SHIELD to get a gluten-free certification 
    • Scott Adams
      Is "Shield" skincare products gluten-free?

      By Scott Adams · Posted

      It’s great that you’re taking the time to research products carefully for your son with celiac disease—especially since accidental gluten exposure through skincare can be a real concern for sensitive individuals. Based on the ingredient lists you’ve shared, none of the products appear to contain obvious sources of gluten like wheat, barley, or rye derivatives. Ingredients like glycerin and tocopherols (not listed here but often a concern) can sometimes be derived from wheat, but many manufacturers use plant-based or synthetic sources. SHIELD’s transparency and willingness to share their full ingredient list is a good sign, and their note about not intentionally adding gluten is reassuring. Still, because ingredient sourcing can vary and sensitivities differ from person to person, it’s wise that you’ve reached out to your GI specialist to be sure these products are safe for your son’s specific needs. In the meantime, if you do try any of the products, consider patch-testing them first and watching closely for any signs of skin irritation or reactions. PS - Most people with celiac disease won't react to skin products that may contain gluten, but I still recommend finding gluten-free products.
    • LynnM
      Is "Shield" skincare products gluten-free?

      By LynnM · Posted

      Greetings Trents and Scott. This is the first time I'm posting here so I apologize in advance if I'm not replying properly. My 13 YO was diagnosed at age 5 and once gluten was removed from his diet, he grew 3" in a year, skin became much better and dark circles around his eyes disappeared. Today his numbers were very high and our new dietician discovered his face cream (Clinique dramatically different lotion) contained gluten. My fault for not checking.    His acne really has only just started and he's using OCT gluten-free products but the SHIELD is nothing short of miraculous for my 16 YO son and the 13 YO is eager to start. I will await his dietician's reply or google each ingredient.    I don't want to put him on that Rx as it's not that bad and isn't painful either. Just a boy starting 8th grade and doesn't want bad acne.    When I hear back I will circle back. 
×
×
  • Create New...