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

You Guys Were All Right About So Many Things...potato, Mixed gluten-free Household, Etc!


shayre

Recommended Posts

shayre Enthusiast

Hi all! I find it hard to stay connected on this site with my small children, so thanks for being here when I need you!

Okay, so I asked my whole family to be gluten free. It took a while to get all of the gluten out of the house. I'd still say that there are a few things to get rid of (ie. cat food, chec...litter, toothepaste etc), but most of it is gone. I DO absolutely feel better! Man, I hated asking my family to do that, but it has paid off. When we are out and about and my kids want to eat an icecream cone, or "normal" pizza, or cookies that we pass by...it feels like a knife in the heart to say no, but I may suffer for it. It sucks! I still am not normal yet, so I am still trying to work through other issues. Doctors are not helping. I am still trying to figure out contamination, airborn exposure, other allergies, possible Lupus, etc. I am really hoping that it will just take time to get better and that I will! I haven't been able to eat breads from Udi's or any other source without problems, so I don't know if it's allowable ppm gluten or just other ingredients? Does anyone know about cat litter? I am using Arm and Hammer brand. Obviously, my cat has it on her feet and walks everywhere, and licks herself. FYI...I went to order a gluten free cake for my son's bday party, and I started feeling flushed and foggy after just standing in the bakery for less than 5 minutes. I think that it took a couple of hours to go away.

Does any one else have non-lupus sun-sensitivity that is related to celiac disease, or am I looking at Lupus issues with this? Maybe I'll post this seperately. One rhuem doc says that I'm borderline, while the next says no lupus. I alot of symptoms.

Also, you were right about the potatoes. I have read your posts, and didn't really believe that potatoes were a source of pain for ME. I decided to quit them for a couple of weeks to see if I noticed anything. I wasn't sure what I noticed after 2 weeks. So...I had some potato chips and a big baked potato one night. My legs were in so much pain that night...that I could not sleep. I waited another week, and had some potato chips. About 2 hours later...started feeling some pain. Unbelievable. So now I have no starches, but rice. I just found Quinoa hot cereal that I tried this morning...not bad. Too much rice also give me digestive issues, so now I will have to start experimenting.

Thank you so much for helping me get this far:) I hope to get farther and be a normal mother and wife!


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

I tested negative for Lupus 3 times but had terrible sun sensitivity. I thought it would never go away. I am 8 months gluten free and I can now tolerate the sun enough to go from place to place in the car during the day. It was that bad before going gluten free that I couldn't be in the sun for 5 seconds without feeling like I would pass out. So in my case it got better but it took some time. I still won't spend any time in the sun, but whatever that was that was causing it seems to be resolving. I don't eat potatoes either and my pain is much more manageable. I think you made a good decidion to take your house gluten free. You will feel much better. The bakery probably made you sick from suspended flour in the air there. I've read about that and I avoid bakeries now.

Best of luck and thanks for posting your progress.

dilettantesteph Collaborator

Glad you are doing better. As a super sensitive I would recommend that you don't eat any processed foods. Keep a journal of what you eat and how you feel so that you can know what bothers you. Don't eat any spices, juice, oil etc.,anything processed for a couple of weeks. Try to get your produce from the farmer's market so that it is less likely to have coatings. Get your meat packaged in the meat processor so that it is less likely to have cc from cutting up in the same place as gluten containing breaded stuff, sausage etc. Then you can add things one per week and see what you can tolerate.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    2. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    3. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    5. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,594
    • Most Online (within 30 mins)
      7,748

    Deedeewhiteside
    Newest Member
    Deedeewhiteside
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
×
×
  • 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.