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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    2. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    4. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

    5. - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.