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

Half A**ed Diagnosis.. Not Sure If I Am Actually Celiac


lmj623

Recommended Posts

kareng Grand Master

Unless it was something else I ate, it could be a million things at this point. But I have been pretty dang good and only eating approved gluten-free items (salads, five guys, yogurt). And I mean my own yogurt because this crap at the hotel has modified corn starch AND modified food starch. I'm supposed to avoid the food starch right? Ok I did eat one of them a few days ago. ..

 

 

I don't worry about "food starch" unless it says "wheat" - which is rare as it usually isn't made from wheat.  

 

Eating at restaurants might be a problem.  I do eat at some places but if you are having on-going issues, it might be best to just eat what you fix for a while.  Eating food made by other people is always risky.


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



Celiac.com Sponsor (A8-M):



SMRI Collaborator

Well it's a little over a week now since I ate those scrambled eggs that went through me within 4 hours and I am definitely feeling off.

For the last 4 days I have had this headache that hurts when I move my eyes, tired, CRANKY, EMOTIONAL, more bathroom time, and my neck is bugging me again. Oh and off and on nausea for the last 2 days.

Why the heck do I have the sleeper cell symptoms? Other than the "urgent greasy evacuation" i didn't have much for symptoms until a couple days later. And now they will surely be stretched out another week. Just in time for my trip to MN....

 

Where are you going in MN? I might be able to help with places to eat--lived there for many years :D.

lmj623 Apprentice

Minneapolis for some of the time and the rest at a wedding in Hudson WI. 

 

Do you guys notice the pain and suffering this late? I am a HOT MESS at work right now which is just great. Trying to hold back tears because i am so frustrated with  my stupid cell phone company and trying not to SCREAM at these people for being so EFFING stupid. At work.. totally profesh. 0-60 in a flash for the second time this morning.. ugh. i don't even get this emotional when i am pmsy. 

 

I think i need a sign to hang around my neck that says "psycho b%$@# on the loose" or maybe just "volatile specimen, approach with caution"

SMRI Collaborator

There are a couple Red Robin's and 5 guy's if nothing else and downtown Minneapolis is a foodie haven so you should have a lot of gluten-free choices.  Not sure if you are driving or flying but if you go through Rochester, MN, stop at Twigs. The owner is Celiac!!!!  The food is fantastic too :D.  The menu is huge too :D.

lmj623 Apprentice

I haven't been to a Red Robin since Gluten-Free, are they pretty trustworthy? I just had 5 guys yesterday YUM!

 

I live in CA so definitely flying.

SMRI Collaborator

I haven't been to a Red Robin since Gluten-Free, are they pretty trustworthy? I just had 5 guys yesterday YUM!

 

I live in CA so definitely flying.

 

VERY--their staff has to undergo training, they have gluten-free buns and all the "allergy" food is brought out separately and in different colored baskets.  You just missed the State Fair-they had 40 vendors this year that had gluten-free offerings :D.

lmj623 Apprentice

No way! I used to live in Minneapolis before I came here and loved the state fair but was thinking to myself lately that it would never be an option to have a FRESH DIPPED CORN DOG ever again. so you are saying there's a chance!!!

 

That is super cool. Too bad it's over already.. dang it.


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



Celiac.com Sponsor (A8-M):



SMRI Collaborator

No way! I used to live in Minneapolis before I came here and loved the state fair but was thinking to myself lately that it would never be an option to have a FRESH DIPPED CORN DOG ever again. so you are saying there's a chance!!!

 

That is super cool. Too bad it's over already.. dang it.

 

Corn dogs were one of the gluten-free options :D.  Open Original Shared Link  

 

MN State Fair--largest and best state fair in the country (Texas doesn't count, their fair is longer so not 'bigger') :D. 1.8 million visitors this year.

dilettantesteph Collaborator

Some reading for your husband.  It a review done by the FDA about how much gluten can make a celiac sick: Open Original Shared Link

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    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
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...