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'm Feeling Hopeless

Bubba's Mom

By Bubba's Mom
in Related Issues & Disorders

Recommended Posts

Aly1 Contributor
Aly1
Posted

I eat Aldi's version of brown minute rice about once a week. I eat Koala Crisp cereal every day though. It's made from Organic brown rice flour.

I swear..no food is safe to eat! :o

You're doing better than me, I eat it 1-2 times a day 6-7 days a week!! And we thought brown rice was healthier. Whatever. If I cut one more thing out of my diet, I swear I will disappear.

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

Celiac.com Sponsor (A8-M):


  • Replies 82
  • Created
  • Last Reply
pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I eat Aldi's version of brown minute rice about once a week. I eat Koala Crisp cereal every day though. It's made from Organic brown rice flour.

I swear..no food is safe to eat! :o

OMG! Have you looked into the possibility that this could be arsenic exposure? :o Here is a link....

Open Original Shared Link

Bubba's Mom Enthusiast
Bubba's Mom
Posted
  • Author

I only just recently started to eat the Rice cereal due to losing so much weight, so I don't think that's my problem? The article also doesn't mention villous damage which I have a lot of.

I was eating more of the instant brown rice at first, but got kind of burned out on it. Lately I've been eating more potatoes. I'm not gonna look up what they do to make them not sprout. :blink:

I guess the possibility of arsenic building up in our systems is something we're going to have to consider? I won't be looking for any Louisianna rice!

squirmingitch Veteran
squirmingitch
Posted

Course, we could all just get IV's & walk around with our little bag of clear liquid feeding into our veins. Hey, then we wouldn't have to worry about where it was safe to eat!laugh.gif

And I'm not going to tell you about the potatoes either. I eat a whole lot of them myself.

hd92392 Newbie
hd92392
Posted

I understand your dilemma,It's bad enough when doctors don't know but worse when they pretend to be all knowing and look at you as if you are a drug seeking hypochondriac. I too felt like you. it took 15yrs to get diagnosed properly. through this process I have learned a lot about myself and my body. I learned that I don't fit the cookie cutter criteria that makes diagnosis more complicated. I learned that even though my labs are normal to the medical field they are abnormal for me. I can now tell when my hemoglobin is low, by how much ice i eat. I know when I have graves disease symptoms because I throw PVC's. I know when I am in Hashimotos, because I get so depressed it is as if I fell off a cliff into a deep hole. Thank God that only happened once!. I had to fight for an iron transfusion, so that I could function and work! I had to fight for more exams that would dig deeper to enable them to find the Graves and Hashimotos Disease btw it is rare that people have both. I had to fight to have my nutritional levels checked and had to tell doctors that I don't have to be a stick to be malnutrioned! bottom line, I had to fight and I am still fighting most importantly though, I am worth it! So are you keep fighting for yourself, autoimmune messes with alot of symptoms so no you aren't crazy they are just ignorant to the unknown specialty of autoimmune related disorders hugs feel better don't give up!

Bubba's Mom Enthusiast
Bubba's Mom
Posted
  • Author

I understand your dilemma,It's bad enough when doctors don't know but worse when they pretend to be all knowing and look at you as if you are a drug seeking hypochondriac. I too felt like you. it took 15yrs to get diagnosed properly. through this process I have learned a lot about myself and my body. I learned that I don't fit the cookie cutter criteria that makes diagnosis more complicated. I learned that even though my labs are normal to the medical field they are abnormal for me. I can now tell when my hemoglobin is low, by how much ice i eat. I know when I have graves disease symptoms because I throw PVC's. I know when I am in Hashimotos, because I get so depressed it is as if I fell off a cliff into a deep hole. Thank God that only happened once!. I had to fight for an iron transfusion, so that I could function and work! I had to fight for more exams that would dig deeper to enable them to find the Graves and Hashimotos Disease btw it is rare that people have both. I had to fight to have my nutritional levels checked and had to tell doctors that I don't have to be a stick to be malnutrioned! bottom line, I had to fight and I am still fighting most importantly though, I am worth it! So are you keep fighting for yourself, autoimmune messes with alot of symptoms so no you aren't crazy they are just ignorant to the unknown specialty of autoimmune related disorders hugs feel better don't give up!

It seems like getting the proper tests run..is like pulling teeth? I've been told many of my symptoms are A-typical.

The Dr. I saw at JAX Mayo called me and said the stool test I requested showed I had a parasite. It's one that often accompanies other things, and isn't something they usually treat. In my case, she said I was in such bad shape she thought it wise to treat it.

I've asked over and over to be etsted for SIBO, yeast, and parasites. They're on the list of things that cause villi flattening. It's ridiculous that I keep suffering and they don't test for these common offenders. It's really frustrating!

Bubba's Mom Enthusiast
Bubba's Mom
Posted
  • Author

You're doing better than me, I eat it 1-2 times a day 6-7 days a week!! And we thought brown rice was healthier. Whatever. If I cut one more thing out of my diet, I swear I will disappear.

Ok..we're not going to give up on the rice completely..maybe check the source..or cutback? We need to have something to eat!

Arsenic used to be used to treat for pinworms. If we need a positive to hang onto..the rice is protecting us from pinworms? LOL :D

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

laugh.giflaugh.giflaugh.giflaugh.giflaugh.gif

That's the spirit! Yeh, the rice is protecting us from pinworms.biggrin.gifbiggrin.gifbiggrin.gif

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.