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

Symptoms But Eating gluten-free

veryami1

By veryami1
in Coping with Celiac Disease

Recommended Posts

veryami1 Apprentice
veryami1
Posted

Hi,

 

So I've been doing really with my Celiac, I've been gluten free for over a month and starting to feel better already! However, today I have cramps, slightly looser stools, and the lightheadedness I was getting before I went gluten-free.  I'm guessing I must have had something accidentally. I can't think of anything, except I did eat out at Flame Broiler yesterday. Asked for no sauce, just plain chicken and rice.  Maybe they weren't careful enough or something.  I don't know. Anyways, my question is, is it possible I've been gluten-free and totally safe, and maybe I just haven't healed yet?  Is it correct to assume that even if I'm totally careful, I'll just have bad days, until I'm healed?  Or do you guys think i was glutened?

 

Thoughts?

 

Thanks in advance!

 

~Ami

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

Celiac.com Sponsor (A8-M):


Sock Newbie
Sock
Posted

Yes; it's likely that you haven't completely healed. THAT said, a month into the diet and it's just as likely that you're still getting glutened by products you think are safe. It took me a few months to figure out that 'reading the label' isn't enough (depending on the company). I will say in this case you were almost certainly glutened when you ate out. Eating out = Russian roulette.

 

Unless it's a resteraunt that caters to celiacs (and even then!) you're gonna get glutened sooner or later. You may be incredibly lucky and visit the same resteraunt five times symptom free (and being symptom free doesn't necessarily mean that the food was safe!), then get nailed on the sixth.

nvsmom Community Regular
nvsmom
Posted

I agree. It could be either. One month is is still very early (although it might feel like forever ;) ) and many people find symptoms reappear  in the first 3 months or so, some need 6 or 12 months before symptoms stop cropping up.... Or you might have been glutened.  :(

 

Either way, I hope you feel better soon.

veryami1 Apprentice
veryami1
Posted
  • Author

So my symptoms continue to change.  Last night I had a terribly runny nose - I thought I had a cold all of a sudden. Really sore throat too. This morning the runny nose has abated but I have tiny itchy red bumps around my neck.  I am diagnosed Celiac AND wheat allergy.  Do you think it sounds like I was glutened?

GottaSki Mentor
GottaSki
Posted

So my symptoms continue to change.  Last night I had a terribly runny nose - I thought I had a cold all of a sudden. Really sore throat too. This morning the runny nose has abated but I have tiny itchy red bumps around my neck.  I am diagnosed Celiac AND wheat allergy.  Do you think it sounds like I was glutened?

 

With the allergy factored in...and allergic symptoms, it certainly sounds like you may have been exposed to gluten.  Are you allergic to any other items?

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Runny nose and itchy red bumps sounds more like an allergic reaction to me.

cyclinglady Grand Master
cyclinglady
Posted

Flame Broiler is NOT gluten free!    The marinade they use has soy sauce it.  Flame Broiler does not accommodate gluten free eaters (maybe for those crazy dieters who think gluten-free is healthy).  Their marinades contain soy sauce.  It stays on the grille, even if you ordered fresh chicken, I have never seen a second grille……not to mention staff who do not get it!  

 

The only fast food I occasionally eat is at IN-N-Out and only at locations that have a second clean grille and those that I can see them grilling the burger.  Takes longer to heat up the back grille, but it's worth it.  Fries?  Remember there are kids working there and after hours they made try to make some weird concoction and thoughtlessly put a bun in the fryer oil.  

 

I would recommend NOT eating out for many more months!  It just sets you back getting glutened and that's so discouraging!

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

Celiac.com Sponsor (A8-M):


veryami1 Apprentice
veryami1
Posted
  • Author

Thanks everyone! I'm sure it was the Flame Broiler!  However, I realized the new potpouri we bought for the house was making my nose run like crazy, so that was to blame for the nose reaction.   Is anyone else like me, crazy sensitive to EVERYTHING? It's a wonder I'm alive at all!

 

I guess no more Flame Broiler. I thought I was being smart and altering the menu item, but that's not smart at all :mellow:  I think it's better for me to eat at home more for the first few months.

 

What do you guys do when you are going to be out for a long time? For instance, today I work until 12:30pm and then I have to dash to the doctor at 1:30.  Easier to pack a lunch and eat on the road? I am not sure what "safe" restaurants there are between work and the doctor and I can't make it home. I think I need "lunch on the road" ideas - stuff that will last awhile in my purse before I devour it ;)

 

~Ami

cyclinglady Grand Master
cyclinglady
Posted

Go Picnic boxes can be found at Target. Toss in a tangerine, apple or banana. I drag a mini cooler around in my car. Am on the hunt for a "pretty and fashionable" cooler to take into places (i.e restaurants with friends). Lara bars are kept in the glovebox. My husband keeps both the Lara bars and Go Picnics in his car and in his luggage when traveling. His fast food is a grocery store for veggies, fruit and bags of chips.

Harpgirl Explorer
Harpgirl
Posted

Thanks everyone! I'm sure it was the Flame Broiler!  However, I realized the new potpouri we bought for the house was making my nose run like crazy, so that was to blame for the nose reaction.   Is anyone else like me, crazy sensitive to EVERYTHING? It's a wonder I'm alive at all!

 

I guess no more Flame Broiler. I thought I was being smart and altering the menu item, but that's not smart at all :mellow:  I think it's better for me to eat at home more for the first few months.

 

What do you guys do when you are going to be out for a long time? For instance, today I work until 12:30pm and then I have to dash to the doctor at 1:30.  Easier to pack a lunch and eat on the road? I am not sure what "safe" restaurants there are between work and the doctor and I can't make it home. I think I need "lunch on the road" ideas - stuff that will last awhile in my purse before I devour it ;)

 

~Ami

 

I make sure I have plenty of gluten free bars with me. Also, having a variety of bars helps because eating the same bars all the time gets old very quickly. Kind bars, Oskiri (sp?), Enjoy Life, and several others. If I'm going to be out for long enough to miss a meal at home and I'm not sure about the restaurants, I'll bring a can of soup with me. There are several varieties of Progresso that are gluten-free and Dinty Moore stew is also gluten-free. Sometimes, depending on the circumstances, I just go ahead and eat the soup cold.

 

Lately, I've been having good luck with Wendy's chili. But I still talk to the manager before I order it, just to make sure they've been careful about cross contamination. :)

veryami1 Apprentice
veryami1
Posted
  • Author

I had another issue this week, thought I was eating gluten-free 100% and again, diarrhea hit.  How am I to know if I got CC, or if it's just healing? When am I going to stop having the weekly bouts of the D?

 

Does anyone understand the actual biology of being glutened? Is it just the antibodies coming on full storm once the gluten hits your intestines? What causes the diarrhea, if I accidentally ate the wrong thing, if I've already started healing?

ColtonBarnes Rookie
ColtonBarnes
Posted

I am extremely sensitive to gluten. I have had to just except that i may not ever be able to eat out again, which being a 20 year old guy who was addicted to fast food, and loved eating at resturaunts. this is very hard, i started the paleo diet about a month ago, so i have been eating all of my meat completely plain, and on monday i went to eat with my parents, and i got glutened because of the cutting board they used when cutting my meat. Not saying that you have to, but i have given up all processed foods, and a never get glutened from food i cook by myself in my gluten-free kitchen area. Just realize that cross-contamination is very hard to avoid for the sensitive celiacs, and cooks at restuaraunts, will most likely not take extreme percautions to avoid this. I get glutened sometimes when im sure that i havent eaten anything that wasnt natural, but then i realize that it was probably from cross contamination. Like one time, i was with a group of friends who were drinking beer, and one of them took a drink out of my personal drink (which was gluten free), and i ended up getting glutened from that. Im sorry to hear your story, because i dont like seeing my fellow celiacs have to live through hell.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Does anyone understand the actual biology of being glutened? Is it just the antibodies coming on full storm once the gluten hits your intestines? What causes the diarrhea, if I accidentally ate the wrong thing, if I've already started healing?

 

I don't think that it is just antibodies.  NCGI folks have reactions too - and they don't make antibodies.  I think it's more complicated than that.  It is the entire immune system reacting and basically freaking out because it sees the gluten as a foreign invader.  And the digestive tract is one of the ways the body has for getting rid of foreign invaders.  Diarrhea makes the elimination process go even faster.  I don't think that it's all that different of a reaction to when you get hit by a flu bug.  The body wants it out.  So it gets it out the fastest way it knows how.

CaliSparrow Collaborator
CaliSparrow
Posted

Is anyone else like me, crazy sensitive to EVERYTHING? It's a wonder I'm alive at all!

YES! In another post, I mentioned that I stopped eating out. I've learned how to pack easy food items. For the first time this week, I was driving and thought, "Now this is true emancipation. I don't have to think of stopping to eat; don't have to change my schedule to go eat. I have more spending money not eating out. Have food, will travel! Completely independent!" It took a while to get there(!) and just to be clear, reserve my right to complain in the future ;)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,199
    • Most Online (within 30 mins)
      7,748
    Stacy M
    Newest Member
    Stacy M
    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

    • Fayeb23
      Waiting Gastroenterology review

      By Fayeb23 · Posted

      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      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
      Waiting Gastroenterology review

      By RMJ · Posted

      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
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      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
      Food Allergies

      By Ginger38 · Posted

      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 
×
×
  • Create New...