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 Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    3. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Aretaeus Cappadocia replied to Anne G's topic in Related Issues & Disorders
      2

      celiac disease and braces

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

    • Total Members
      133,705
    • Most Online (within 30 mins)
      7,748

    Gigisboysx2
    Newest Member
    Gigisboysx2
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
    • Aretaeus Cappadocia
      Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
×
×
  • 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.