Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Feels like I can’t eat anything


SargeMaximus

Recommended Posts

SargeMaximus Collaborator
3 hours ago, Wheatwacked said:

This vitamin chart below might help in your quest. 

 

I thnk the risk of toxicity is much less than the effects of deficiency and is easily reversed.

"Urinary iodine reflects dietary iodine intake directly because people excrete more than 90% of dietary iodine in the urine" NIH Iodine Fact Sheet for Health Professionals

"Over the last two decades, people in the US have been eating bread that used to have iodine, which has now been replaced with bromine. Bromine blocks the production of thyroid hormones so thyroid dysfunction is at an all-time high in the US. "   https://borntobeboomers.com/the-truth-about-bread-bromines-iodine-deficiency-and-your-thyroid/


image.png.59a0347ae08a091d5823d0e33c0bc719.png

That’s odd because I read that over a certain amount of Iodine was lethal


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



Celiac.com Sponsor (A8-M):



  • Replies 347
  • Created
  • Last Reply

Top Posters In This Topic

  • SargeMaximus

    165

  • knitty kitty

    52

  • Wheatwacked

    41

  • trents

    40

Top Posters In This Topic

  • SargeMaximus

    SargeMaximus 165 posts

  • knitty kitty

    knitty kitty 52 posts

  • Wheatwacked

    Wheatwacked 41 posts

  • trents

    trents 40 posts

Posted Images

Soren Newbie
41 minutes ago, SargeMaximus said:

That’s odd because I read that over a certain amount of Iodine was lethal

Thank you for the chart! 

Liquid lunch Enthusiast

You can test your iodine levels at home with a ‘skin patch test’. Your skin only absorbs it if it’s needed.

’If the patch disappears or mostly disappears in less than 24 hours, it is supposed to indicate some degree of deficiency. Significant lightening or a complete disappearance in less than 18 hours is said to indicate a moderate to severe iodine deficiency and  suggest a need to supplement.’

It gives me DH so best to avoid it if that’s an issue.

SargeMaximus Collaborator
15 hours ago, Wheatwacked said:

This vitamin chart below might help in your quest. 

 

I thnk the risk of toxicity is much less than the effects of deficiency and is easily reversed.

"Urinary iodine reflects dietary iodine intake directly because people excrete more than 90% of dietary iodine in the urine" NIH Iodine Fact Sheet for Health Professionals

"Over the last two decades, people in the US have been eating bread that used to have iodine, which has now been replaced with bromine. Bromine blocks the production of thyroid hormones so thyroid dysfunction is at an all-time high in the US. "   https://borntobeboomers.com/the-truth-about-bread-bromines-iodine-deficiency-and-your-thyroid/


image.png.59a0347ae08a091d5823d0e33c0bc719.png

https://pubmed.ncbi.nlm.nih.gov/32809605/

Wheatwacked Veteran
7 hours ago, Liquid lunch said:

It gives me DH so best to avoid it if that’s an issue.

@knitty kitty mentioned in a recent post that she uses Lugol or Tincture of iodine to paint a patch for absorbtion through the skin and it does not cause an outbreak of her DH.  I have read about the skin patch test and some say it is valid, others say it is not reliable. How to Perform the Iodine Patch Test.

Quote

"The 2018 annual report of the American Association of Poison Control Center's National Poison Data System...lists 853 single exposures to topical iodine with 51 adverse events and no deaths."  https://www.ncbi.nlm.nih.gov/books/NBK560770/

 

After about 2 weeks of eating one sheet of Nori a day I noticed a definate improvement in my musle tone especially in the chest and shoulders. A 2.5 gram sheet of nori contains 58 mcg of iodine. You need to eat 2 sheets a day to reach the RDA and it would take 19 sheets a day to reach the RDA safe upper limit of  iodine. If chelated iodine is only 37% absorbed it would take around 60 sheets of nori every day to actually reach the safe upper limit and a single sheet is only effectively 20 mcg. Our safe upper limit is only 3% of the typical Japanese consumption.

Quote

"Potassium iodide is absorbed and excreted at different rates in the body (Combet et al, 2014) than chelated (seaweed) iodine. As only 37% of seaweed iodine is absorbed, you can consume roughly three times as much to get the same absorption rate as you would in a potassium iodide supplement. How much Iodine is in Seaweed?

 

  https://www.webmd.com/diet/foods-high-in-iodine

Iodine today is in high demand by the government to stockpile for nuclear disaster and medicine for radioactive iodine. 8 years ago there were lots of links about the use of iodine to treat disease prior to 1950 but that information seems to be gone. Dr Brownstein a leader in iodine use has recently been told to desist by the FTC. Thyroid and Iodine with Dr. David Brownstein

The Wolff-Chaikoff Effect:Crying Wolf? 

Liquid lunch Enthusiast

 

10 minutes ago, Wheatwacked said:

that information seems to be gone

It’s scary how information is being censored, I tried using iodine directly on DH and it was making it worse so switched to essential oils which work great.

Now even using it on cuts seems to cause problems elsewhere on my body but it’s hard to know for sure with accidental gluten ingestion and only recently realising about oats also being potential factors.

Could be it’s getting into the bloodstream through the cut and might be ok on undamaged skin, I’ll give it another try. 

knitty kitty Grand Master
On 1/15/2023 at 7:40 PM, SargeMaximus said:

So I check d out cream of rice. It has 45% the RDA for iron! Waaaaaayyyy too much. Iron toxicity is a thing for males

Hi, @SargeMaximus,

Donating blood occasionally can lower iron levels if too high in males.  


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master
On 1/16/2023 at 7:03 AM, Liquid lunch said:

Arsenic is an issue with rice as it tends to be grown on shale, it’s not recommended to give rice milk to children. 

Thiamine can chelate heavy metals like arsenic and lead. 

Arsenic and other heavy metals bind to a part of the thiamine molecules and can be easily excreted from the body.  This binding affinity is so great, arsenic and other heavy metals cause thiamine deficiency.  

Thiamine also protects against radiation.  Thiamine tablets were passed out in Ukraine when the Russians controlled the nuclear power plants.  And at Chernobyl and in Japan....

knitty kitty Grand Master
On 1/18/2023 at 6:47 AM, Soren said:

Sorry I’m new to all this and your situation sounds similar to mine. I am losing weight very quickly and still have frequent times of nausea and diarrhea plus I think my brain is being effected ( can’t process information, depression, anxiety …brain fog they call it). 
I’ve never heard anything about testosterone! Can you fill me in on what that is and looks like? How would you know if you are low on testosterone? 

Thiamine is needed to make testosterone.  

Symptoms of Thiamine deficiency include unintentional weight loss, nausea, diarrhea, and brain fog changes in thinking.  

The best test to see if you are low in thiamine is to take Thiamine Hydrochloride (minimum 500 mg/day) and see if you notice improvement.  

 

Soren Newbie
47 minutes ago, knitty kitty said:

Thiamine is needed to make testosterone.  

Symptoms of Thiamine deficiency include unintentional weight loss, nausea, diarrhea, and brain fog changes in thinking.  

The best test to see if you are low in thiamine is to take Thiamine Hydrochloride (minimum 500 mg/day) and see if you notice improvement.  

 

Thank you! thank you! thank you! 
I will definitely try this! 

SargeMaximus Collaborator

Update: Ordered the thiamine January 9th… still hasn’t arrived. Stupid

SargeMaximus Collaborator

Update: Had jasmine rice with each meal today and have headache and body hot flashes. Won’t be eating rice again. 

Liquid lunch Enthusiast
20 hours ago, SargeMaximus said:

Update: Had jasmine rice with each meal today and have headache and body hot flashes. Won’t be eating rice again. 

I read that on average 30% of rice is cross contaminated with gluten but you can get gluten free on Amazon.

SargeMaximus Collaborator
1 minute ago, Liquid lunch said:

I read that on average 30% of rice is cross contaminated with gluten but you can get gluten free on Amazon.

I’m boycotting Amazon. I’ll just go without rice. Thanks anyways 

trents Grand Master
(edited)
20 minutes ago, Liquid lunch said:

I read that on average 30% of rice is cross contaminated with gluten but you can get gluten free on Amazon.

I find that a little hard to believe since rice is not grown in the same environments as is wheat. Of course, there is always CC from processing, but 30%? I have never had a problem with cooked rice.

Edited by trents
SargeMaximus Collaborator
1 hour ago, trents said:

I find that a little hard to believe since rice is not grown in the same environments as is wheat. Of course, there is always CC from processing, but 30%? I have never had a problem with cooked rice.

Maybe I need one of those instant pots. I want to be able to cook my meat ant potatoes or whatever carb all at the same time. Is that possible, do you know?

knitty kitty Grand Master

@SargeMaximus,

Have you tried wild rice "manoomin" raised by Native Americans according to traditional methods? 

Manoomin is NOT related to Asian rice.  Manoomin is native to North America.  

This has been one of the best things I've found to eat.  It's gluten free with NO risk of cross contamination if traditional methods are used.  

https://redlakenationfoods.com/product/minnesota-cultivated-wild-rice-quick-cook-traditional-finish/

and...

https://heritagefoods.com/products/wild-rice-anishinaabeg-nation

Liquid lunch Enthusiast
8 hours ago, trents said:

I find that a little hard to believe since rice is not grown in the same environments as is wheat. Of course, there is always CC from processing, but 30%? I have never had a problem with cooked rice.

Apologies, I just double checked where I read this in an article about cross contamination of rice with gluten and it was referring to gluten in restaurant food labelled gluten free, not rice specifically.

It did mention that it might cause similar symptoms though, so could be it’s this that has caused me to avoid it and not cross contamination as I had assumed.

‘In my clinical practice, I have nutritionally counseled thousands of patients with celiac and non celiac gluten sensitivity. Over several decades of practice, I have documented rice as a cause of a variety of symptoms. Some of the more common ones include:

Persistent joint and muscle pain

Muscle cramping

Nerve pain

Migraine headaches

Brain fog

Skin rashes 

Stomach pain

Diarrhea and constipation

Blood in the stool

Intermittent low grade fevers in the absence of infection’

‘In addition to containing the gluten, orzenin, rice is also highly susceptible to cross contaminationby grains like wheat, barley, and rye.’

‘Rice can also be a source of intestinal inflammation. In fact, it can trigger a non-immunoglobulin E (IgE)-mediated food hypersensitivity, which affects the gastrointestinal tract by causing an immune response and intestinal inflammation. 

One of the most common conditions linked to a non IgE-mediated food sensitivity is food protein-induced enterocolitis syndrome (FPIES).

The symptoms of FPIES are very similar to the symptoms of celiac disease and include:

Vomiting

Diarrhea

Weight Loss

Failure to Thrive (in infants)

Lethargy

Poor Energy

Celiac disease shares a similar non-IgE food sensitivity to FPIES, and like FPIES, this reaction can betriggered by foods like rice. 

Because of this symptom overlap, diagnosis may be tricky. To further complicate the issue, the two conditions can coincide.  Meaning that it is possible to have both celiac disease and FPIES. Many diagnosed celiacs go traditionally gluten free and continue to struggle. This condition, oftentimes referred to as refractory celiac disease may persist because other food reactions are still driving intestinal inflammation. And as recent research suggests, rice may be the culprit in some patients.  

Furthermore, foods like rice that trigger intestinal inflammation can also cause downstream effects by triggering an immune response, and ultimately, an autoimmune condition.’

SargeMaximus Collaborator
3 hours ago, Liquid lunch said:

Apologies, I just double checked where I read this in an article about cross contamination of rice with gluten and it was referring to gluten in restaurant food labelled gluten free, not rice specifically.

It did mention that it might cause similar symptoms though, so could be it’s this that has caused me to avoid it and not cross contamination as I had assumed.

‘In my clinical practice, I have nutritionally counseled thousands of patients with celiac and non celiac gluten sensitivity. Over several decades of practice, I have documented rice as a cause of a variety of symptoms. Some of the more common ones include:

Persistent joint and muscle pain

Muscle cramping

Nerve pain

Migraine headaches

Brain fog

Skin rashes 

Stomach pain

Diarrhea and constipation

Blood in the stool

Intermittent low grade fevers in the absence of infection’

‘In addition to containing the gluten, orzenin, rice is also highly susceptible to cross contaminationby grains like wheat, barley, and rye.’

‘Rice can also be a source of intestinal inflammation. In fact, it can trigger a non-immunoglobulin E (IgE)-mediated food hypersensitivity, which affects the gastrointestinal tract by causing an immune response and intestinal inflammation. 

One of the most common conditions linked to a non IgE-mediated food sensitivity is food protein-induced enterocolitis syndrome (FPIES).

The symptoms of FPIES are very similar to the symptoms of celiac disease and include:

Vomiting

Diarrhea

Weight Loss

Failure to Thrive (in infants)

Lethargy

Poor Energy

Celiac disease shares a similar non-IgE food sensitivity to FPIES, and like FPIES, this reaction can betriggered by foods like rice. 

Because of this symptom overlap, diagnosis may be tricky. To further complicate the issue, the two conditions can coincide.  Meaning that it is possible to have both celiac disease and FPIES. Many diagnosed celiacs go traditionally gluten free and continue to struggle. This condition, oftentimes referred to as refractory celiac disease may persist because other food reactions are still driving intestinal inflammation. And as recent research suggests, rice may be the culprit in some patients.  

Furthermore, foods like rice that trigger intestinal inflammation can also cause downstream effects by triggering an immune response, and ultimately, an autoimmune condition.’

Sounds like me. So what can I eat for carbs to avoid all that?

4 hours ago, knitty kitty said:

@SargeMaximus,

Have you tried wild rice "manoomin" raised by Native Americans according to traditional methods? 

Manoomin is NOT related to Asian rice.  Manoomin is native to North America.  

This has been one of the best things I've found to eat.  It's gluten free with NO risk of cross contamination if traditional methods are used.  

https://redlakenationfoods.com/product/minnesota-cultivated-wild-rice-quick-cook-traditional-finish/

and...

https://heritagefoods.com/products/wild-rice-anishinaabeg-nation

Way too expensive 

Liquid lunch Enthusiast
2 hours ago, SargeMaximus said:

Sounds like me. So what can I eat for carbs to avoid all that?

I’ve started growing 4 different varieties of potatoes and 2 types of quinoa, that’s almost a different carb option for each day of the week! Ordering some oca tubers so we’ll see how that goes. Similar to potatoes but with a lemon flavour apparently, not tried any yet.

SargeMaximus Collaborator
3 hours ago, Liquid lunch said:

I’ve started growing 4 different varieties of potatoes and 2 types of quinoa, that’s almost a different carb option for each day of the week! Ordering some oca tubers so we’ll see how that goes. Similar to potatoes but with a lemon flavour apparently, not tried any yet.

Quinoa affects me negatively. I already eat potatoes and beans for carbs with oatmeal

Wheatwacked Veteran
(edited)
10 hours ago, Liquid lunch said:

In my clinical practice, I have nutritionally counseled thousands of patients with celiac and non celiac gluten sensitivity. Over several decades of practice, I have documented rice as a cause of a variety of symptoms. Some of the more common ones include:

All those symptoms sounds suspeciously like Thiamine deficiency.

"The total amount of thiamine in a person is approximately 30 mg, an amount which can be depleted within 2-3 weeks....The refining process for various foods, including rice and wheat flour, results in loss of thiamine (among other nutrients)...   In fact, the widespread outbreaks of beriberi in the late 1800's were associated with the widespread distribution of milling machines which made rice polishing more efficient."  CAUSES OF THIAMINE DEFICIENCY

Edited by Wheatwacked
Liquid lunch Enthusiast

This gives me hope, my issues with it were intermittent which is what made me think it was cross contamination but I’ve been eating loads of thiamine so maybe it could be worth trying to reintroduce it. The gluten free one listed on Amazon is apparently no longer labelled as such on the packaging so it’ll have to be a gamble on the regular stuff.

21 minutes ago, Wheatwacked said:

All those symptoms sounds suspeciously like Thiamine deficiency.

"The total amount of thiamine in a person is approximately 30 mg, an amount which can be depleted within 2-3 weeks....The refining process for various foods, including rice and wheat flour, results in loss of thiamine (among other nutrients)...   In fact, the widespread outbreaks of beriberi in the late 1800's were associated with the widespread distribution of milling machines which made rice polishing more efficient."  CAUSES OF THIAMINE DEFICIENCY

 

Wheatwacked Veteran

Solgar is the only brand I've found of Thiamine HCl 500 mg. It is free of gluten. The WHO uses a test of 500 mg/day. If symptoms improve it is thiamine deficiency; treatment is to continue. Benfothiamine is a fat soluable synthetic form of thiamine that may work quicker at a lower dose but I think is more expensive. @knitty kitty has the experience with it.

knitty kitty Grand Master
7 hours ago, Wheatwacked said:

Solgar is the only brand I've found of Thiamine HCl 500 mg. It is free of gluten. The WHO uses a test of 500 mg/day. If symptoms improve it is thiamine deficiency; treatment is to continue. Benfothiamine is a fat soluable synthetic form of thiamine that may work quicker at a lower dose but I think is more expensive. @knitty kitty has the experience with it.

Thiamine Hydrochloride (HCL) can be used in large doses from 500 to 2000 mg per day.  Be sure to increase the dose slowly.  Spread smaller doses throughout the day, about every three hours, take with food.  Don't take after 5pm or so if insomnia occurs.

Sometimes while increasing the dose of Thiamine, a person can experience flu like symptoms, but these usually go away in a few days.  It's the body's way of  readjusting to running with  plentiful thiamine.  Decreasing the dose can help.  Then try increasing again.  

The fat soluble forms of Thiamine  (Benfotiamine and Allithiamine) can be taken at lower doses because they can get into cells through the cell membranes.  Increase doses slowly.  

Elliott Overton's website and YouTube channel, eonutrition, has helpful dosing information.  

Dr. Lonsdale and Dr. Marrs' paper...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps! 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,760
    • Most Online (within 30 mins)
      7,748

    DayaInTheSun
    Newest Member
    DayaInTheSun
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @DayaInTheSun Welcome to the forum! I've been a Mod on this forum for some years now and your feelings are shared by many of us.    I am not sure how long you have been diagnosed, but in my own case I do find that time has helped.  It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac disease and what it entails, either because they've hung around me long enough or have got to know other coeliacs who have educated them.  Also, two of my close friends are coeliacs and another has become allergic to yeast and with that has developed a shed load of other intolerances, so we either cook for each other or tend to socialise over coffee or just a visit to the pub, or meet for a picnic. I now have found a few trusted restaurants and pubs where I can relax and enjoy a meal.  But I would never risk this without a bit of research first, looking at online reviews and preferably asking friends for their personal recommendations. If I am not sure, I don't take any chances and eat before I go out, just saying to the staff, "I'm not eating, but I'll order a drink" without any explanation.  I actually find that much easier than saying, "I'm a coeliac" because they then try to persuade you to try their gluten free menu which can be a bit hit and miss.  I hope others will chime in but I just wanted to reply to say you are certainly not alone in this.  I do hope that over Christmas you will find a few treats you can eat at home. Cristiana    
    • DayaInTheSun
      Anyone else feel this way? Not only do I have celiac disease but a few food intolerances too. I can’t do dairy, soy, nuts (nuts is an actual allergy lip swelling need an EpiPen) , or eggs. I get stomach pain when I eat seeds, dairy gives me crippling pain, I only recently put together the hives when I eat  soy.  Family wants to go out and eat tells me the restaurant is gluten free but the gluten free bread has eggs or soy or they use the same prepping area as food with gluten in it. I’ve been slowly eliminating food trying to figure what my triggers were. It’s been 6 months since I’ve last had hives and joint pain after cutting out all the foods I listed above. But I can’t help but feel like a burden to everyone. They always heavily sigh when I refuse to eat from restaurants.  They encourage me to eat out but I’m only now starting to physically feel better. I want to give in so I won’t be such a burden. And ruin other people’s fun.  Going out on dates is a nightmare trying to explain to them what I can and cannot have they pretend to understand but I feel like it’s a turn off. 
    • Dora77
      When cooking pizza, first a regular (gluten-containing) pizza is baked in the oven. Before the gluten-free pizza goes in, the oven is wiped down with a cloth soaked in vinegar oil. Is this method safe for avoiding cross-contamination? Similarly, if gluten-containing bread is heated in a pan, and before gluten-free food is cooked, the pan is wiped with vinegar and oil—would this be safe for someone with celiac disease? I’m asymptomatic, so I can’t tell if I’ve been exposed to gluten, but I’m worried about the potential risk of malabsorption or long-term damage. Would everyone with celiac disease be affected by such small traces of gluten, or could this method be acceptable? Also I don't eat out anymore due to potential cross contamination. The only thing that could gluten me is the things I mentioned above and that my family is not completely glutenfree. Also I eat spices like pepper which say "could contain traces of gluten" (I live in Germany). Even if they contain traces of gluten, do you think it wold be more than 20mg or be enough to cause damage? I mainly eat glutenfree, my only risk is cross contamination. Do you think it could still cause damage to my small intestine leading to malabsorption? (my only worry as I never had symptoms even if I ate gluten). My blood tests for tTG-IgA (I get tested yearly) are negative, but I heard those are not reliable as it could be that they are only high if you ate lots of gluten.
    • ABP2025
      I would say I wasn’t on a gluten free diet but I’m not sure if I was consuming enough gluten before I took the tests. How long should I be consciously including gluten in my diet before I take the test? I would say I wasn’t on a gluten free diet but I’m not sure if I was consuming enough gluten before I took the tests. How long should I be consciously including gluten in my diet before I take the test?
    • trents
      Was the blood draw made while you were still consuming regular amounts of gluten and had been doing so for at least a period of months? Getting blood antibody tests after already having embarked on a gluten free diet or even limiting gluten consumption will invalidate testing.
×
×
  • Create New...