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

end of my rope


ironictruth

Recommended Posts

Dee1234 Rookie
9 hours ago, Gemini said:

Almost everything you listed as containing gluten does not.  Some definitely have gluten free counterparts that can easily be found in most grocery stores but things like bacon, red wine, ham and a few others are naturally gluten free so a I am not sure where you came up with this list.  Many of what you listed are not the healthiest choices out there and may cause stomach distress in some people but it most likely would not be from gluten.  As always, read the label!

Yea most of those are naturally gluten-free,  but a lot of processed foods....like ham can have gluten added. It says right on the label.

 

I'm lucky enough to live near an ALDIS grocery store .they have certified gluten-free products and it's not as expensive as reg grocery gluten-free stuff! ( thank goodness!) 

 

Ok. Well....it works for me. It wasn't until i stopped eating all those items withvtge extra added stuff that i felt 110% better. Plus...my issue is a brain issue...not so much a stomach issue. 

 

aybe people with the brain disease are more sensitive to it affecting them? 

 

Again. It worked for me and iconictruth sounds like she's having the exact same thing happen. 

 

Maybe I'm posting in the wrong forum. 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
43 minutes ago, Dee1234 said:

Yea most of those are naturally gluten-free,  but a lot of processed foods....like ham can have gluten added. It says right on the label.

 

I'm lucky enough to live near an ALDIS grocery store .they have certified gluten-free products and it's not as expensive as reg grocery gluten-free stuff! ( thank goodness!) 

 

Ok. Well....it works for me. It wasn't until i stopped eating all those items withvtge extra added stuff that i felt 110% better. Plus...my issue is a brain issue...not so much a stomach issue. 

 

aybe people with the brain disease are more sensitive to it affecting them? 

 

Again. It worked for me and iconictruth sounds like she's having the exact same thing happen. 

 

Maybe I'm posting in the wrong forum. 

Celiac is hard enough, we just hate to see people making it any more difficult than it needs to be.  Maybe you have other food sensitivities.....maybe when you have healed you will be able to tolerate other foods....  

i have heard great things about the Aldi products, but I imagine they have a lot of extra ingredients, too.

Gemini Experienced
2 hours ago, Dee1234 said:

Yea most of those are naturally gluten-free,  but a lot of processed foods....like ham can have gluten added. It says right on the label.

 

I'm lucky enough to live near an ALDIS grocery store .they have certified gluten-free products and it's not as expensive as reg grocery gluten-free stuff! ( thank goodness!) 

 

Ok. Well....it works for me. It wasn't until i stopped eating all those items withvtge extra added stuff that i felt 110% better. Plus...my issue is a brain issue...not so much a stomach issue. 

 

aybe people with the brain disease are more sensitive to it affecting them? 

 

Again. It worked for me and iconictruth sounds like she's having the exact same thing happen. 

 

Maybe I'm posting in the wrong forum. 

Yes, that is why I mentioned always reading a label.  Just because one brand of ham may contain gluten does not mean they all do.  I have yet to find one that is not gluten free but I am sure they do exist.

GFinDC Veteran

Sometimes turkeys and hams are labeled as having gluten in them, but it is really in a separate gravy / glaze packet that can removed and tossed.

If it works for you Dee, that is fine.  Some supposedly naturally gluten-free flours/grains are cross contaminated with gluten during shipping or processing.  So it is possible to have problems with naturally gluten-free grains etc if that is the case.  It's always a good idea to research a product if it is new to you and see if other celiacs have had problems with it.  Often people will post reviews or complaints of problem products on this forum.  If in doubt, it doesn't hurt to check with the maker of the product also.

I made a turkey for Thanksgiving that had a gravy packet in a plastic baggie.  I tossed the gravy packet and all is well.

ironictruth Proficient
20 hours ago, Dee1234 said:

I can't say if it's normal or not. 

 

All i know is that i hardcore cut out every single thing that could possibly contain even at tiny amount of gluten...And i got better.

 

 

Honestly i wouldn't mess around with it. My dr friend that i ended up speaking to months later. (friend....he lives far away and is not my dr) said that gluten ataxia can cause permanent damage and that i was lucky i thought of it first. Then he yelled at me for not calling him for medical advice. Lol

 

But seriously, he said it sounds like i have it and not to take any chances. It can build up and get progressively worse. 

 

I had those same symptoms and a few more i forgot to mention like a rash on my legs for the past....30 yrs that no dermatologist could determine, btw, and superficial...like surface of the skin pain. Sort of on my wrists, back, hips, stomach. It felt like if you were a kid and skinned your knee. Sometimes if my bf would touch that spot ...or no one touching me. And it got worse. 

 

 

All that stuff went away after stopping gluten.

So...my point is...research it and stay away from anything on the list that might have gluten. Like cold cuts, ice cream, medications have gluten in the coating sometimes, but the pharmacy usually has gluten-free, vitamins too, sour vream, certain red meats, turkey, chicken on the rotisserie, ham, any sausage, candy, red wine and basically all alchohol except vodka, gin, and a few brands of white wine (arbor mist is gluten free), any bbq sauce, ketchup, most sauces,bacon... I can't think of anything else.

And the obvious wheat products in general. 

So.....at least try it. What's it going to hurt? 

 

 Good Luck.

.yes, I have seen this on here before. That the nuero folks seem hyper sensitive. I have also read concern about processed gluten-free foods in general, that they may all contain a trace amount and if you eat enough, they sort of add up. 

I am so tired of the guessing games about my health and praying it is gluten related. Latest scan just showed some mild contrast area in the cecum and appendix, as well as my intestine being full despite going 3x that day. 

My GI ordered a tumor study for this week and still plugging away with what the celiac specialty clinic will want. 

Tampering with the idea of taking elavil for pain, but afraid to add more damn drugs. Also tampering with begging for low dose prednisone to see if it calms anything down. 

One day at a time. 

Thanks everyone! 

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...