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

I Know, This Is Really Random


Susy13

Recommended Posts

Susy13 Newbie

I'm going to have an endoscopy in January, and I know regardless of the results I'm going to go gluten free to see if I feel better.

So anyway especially near the beginning, I'm going to be always having to check whether things are safe yet...and I'm wondering how you guys deal/dealt with it in the beginning? I don't have internet on my phone, should I get it? I don't want to be stuck in a situation where it could be tricky. I'm sort of trying to think and plan ahead.


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



Celiac.com Sponsor (A8-M):



Mey Marie Explorer
I'm going to have an endoscopy in January, and I know regardless of the results I'm going to go gluten free to see if I feel better.

So anyway especially near the beginning, I'm going to be always having to check whether things are safe yet...and I'm wondering how you guys deal/dealt with it in the beginning? I don't have internet on my phone, should I get it? I don't want to be stuck in a situation where it could be tricky. I'm sort of trying to think and plan ahead.

I have a hard time still with my shopping trips. I make my list and go on line to make sure that my favorite brands are gluten free. If they are not I look for the name of one that is. I don't have a phone that goes on line but my hubby does, and I have to say that when he is with me at the store it is nice to have. Most times he isn't though. So just plan ahead and it will be ok. And you also can ask you store to print out a list for you of all the gluten free products in there store. I think most of them have a list. That way you have no question, and your not relying on someone's blog and hoping they know what they are talking about.

Good luck. You will get the hang of it really quick. It didn't take me to long.

tarnalberry Community Regular

Nothing, not even the internet in your hands, replaces reading labels. Yes, on everything that has a label, EVERY time you go to buy it (formulations change). The list of ingredients to avoid isn't actually that long, and that's what really matters. (When in doubt, don't try it.) Of course, as much cooking from scratch (which doesn't have to time consuming, if it's simple) makes this all much easier.

Welda Johnson Newbie

Here's hoping you have an easy time with your endoscopy and with staying gluten free. I've been on this diet for years, and it gets easier and easier. Eating the same groups of foods certainly helps us be more creative with our menus. Meats, fruits & vegetables comprise my diet, and I have to agree with Tarnalberry that it's all about reading labels, endlessly. It takes time, but it's worth it. Food additives cause some people more problems than they realize, so be careful of things like casein, whey, egg whites, yeast, etc. Being intolerant of all grains, all milk & dairy, egg whites, yeast, casein, whey, etc. means being diligent about every food I eat, but that's okay, because I'm healthier than ever before. Best wishes to you on this journey. Welda

Shess0816 Apprentice
I'm going to have an endoscopy in January, and I know regardless of the results I'm going to go gluten free to see if I feel better.

So anyway especially near the beginning, I'm going to be always having to check whether things are safe yet...and I'm wondering how you guys deal/dealt with it in the beginning? I don't have internet on my phone, should I get it? I don't want to be stuck in a situation where it could be tricky. I'm sort of trying to think and plan ahead.

Here are a couple of other suggestions. I know that there are a couple different books that are published (I believe on a yearly basis) that contain a list of all gluten free products by brand or by type of food. The only caveat with these is, you still HAVE to read the labels before you buy those products since ingredients can change often in foods. But at least that would give you a starting point for which products to look at first. The second thing I do sometimes is if I am in a store and I am looking at buying a product that I am not sure is gluten free, there is usually a 1-800 number on the product. You can call up the company right while you are standing in the store and ask them if that specific product is gluten free or not. They should to be able to tell you right away if it is. If they seem confused or cannot guarantee it is gluten free, don't buy it! Third, a lot of stores have a lot of gluten free products in their health food sections. I shop there a lot for convenience foods because it takes the guesswork out of it.

Hope that helps some!

Sally

Susy13 Newbie

thank you all for your great suggestions. I'm going to look into everything!

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. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,927
    • Most Online (within 30 mins)
      7,748

    Lindafink
    Newest Member
    Lindafink
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.