10 years later, my celiac is progressing

[trents]

Thyroglobulin antibody: nearly 1,000 (ref: 0.0 to 0.9)!

What's with that? It's super high! Do you have Hashimotos? Maybe you said that already somewhere back in this long thread.

[Wheatwacked]

1 hour ago, GardeningForHealth said:

I think we need to be as scientific as possible about these things in order to really uncover what the culprit is.

The only way is to keep a food journal, ingredients and quantity and calculate your daily intakes.  "Eating the rainbow" is a nice panacea but is just guessing.  Blood tests show blood level, not cellular content.

Shows how accuracy in words is important.  One souce says "high levels of TgAb (≥40 IU/mL) are linked to increased rates of thyroid cancer).  Don't freak out. Your high level TgAb = 1000 IU/mL indicates Hashimoto, not cancer.

Your Thyroglobulin antibody: nearly 1,000 (ref: 0.0 to 0.9) is an indicator of autoimmune Hashimoto.   It's the most common symptom of hypothyroidism, or underactive thyroid.  Actually the CAUSE is more likely low iodine.  Maybe that fits with your selenium experience.  Lots of selenium without enough iodine.  In the US milk is about the only good source of iodine.  Liquid iodine has 50 mcg of iodine per drop, (I get mine from Pipingrock.com) if you do, start with one drop a day and evaluate.  Low iodine intake will not necessarily show up in blood tests.

Some blood tests that you did not show results that may give more insight to your status.

1. A mUIC medium urinary iodine concentrationt will tell you your intake, or calculate intake from your food diary.  
2. Vitamin D  Almost every autimmune disease has low vitamin D.  I think I described how I determined my dose in a previous post.
3. Choline blood test  90% of us don't get the minimum RDA
4. Homocysteine blood test.  indicates cardiovascular inflammation, may indicate choline, B6, B12, folate deficiency
5. Folate  before sucking down folic acid read this Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial

Some reading:

The Wolff-Chaikoff Effect

Iodine: Good or Bad for Thyroid Health?  notice that Dr Wentz does not recommend against low dose iodine, only super high doses.

Iodine Insufficiency in America: The Neglected Pandemic

Iodine and Iodine Deficiency: A Comprehensive Review of a Re-Emerging Issue

Iodine Fact Sheet for Health Professionals

The Health Benefits of Selenium & Its Relationship with Iodine

Edited September 2, 2024 by Wheatwacked

[Scott Adams]

8 hours ago, GardeningForHealth said:

Guys, I really do appreciate you trying to help me. The fact is, I do need help.

But because of the huge volume of info out there on these topics (it could fill several libraries), I would prefer to reel it in to only info that is directly relevant to what I am dealing with in this thread, and that is the question of, "What is making me sick, and how can I get better?"

• Is it gluten?
• Is it overdoses on vitamins?
• Is it cross-reactivity with troublesome foods?
• Or is it something else, or maybe all the above?

My entire life I've taken vitamins; I grew up taking them because my parents gave them to me when I was a child and a teenager. So I grew up believing that vitamins are healthy and necessary. I know that they have a place. 

However, I have also learned that they can be harmful. I now know this because this has been my experience. How do I know this? Because when I stopped taking 200 mcg selenium per day supplement, I got better. Not completely better, but a lot better. I was so sick.

What does this tell me? It tells me that either I was overdosing on selenium every day for about 2 years, or it tells me that there was something in the bottle that should not have been there. I will be contacting my doctor about this and hopefully she can help me get the supplement tested. It could also be that there is gluten contamination in that supplement. I do not know at this time. Testing will be necessary and I am pursuing that route now.

200 mcg selenium is not the only thing that harmed me. Several years ago, I also became sick taking a B complex supplement that contained many multiples of the RDA of several B vitamins, and I can confidently say that this supplement harmed me. This B complex supplement contained 100 mg of Vitamin B6. I did not take the full dose daily; I took half that, so I was consuming only 50 mg Vitamin B 6 daily for a few years. This amount of B6 caused dizziness, vertigo and ataxia. After stopping the B6, I slowly got better, but I have some permanent ataxia as a result of the B6 that will never go away.

I was referred to the neurologist about my dizziness and vertigo, and I had an MRI; they found nothing on the MRI. I showed the neurologist my supplement and he told me that it can cause all of my symptoms including ataxia. 

I appreciate you guys helping me. So far, knitty kitty has helped me to uncover that I was likely overdosing on selenium. I appreciate that very much. I hope that I can continue to uncover more info about what is making me sick, because while I'm doing better, I'm definitely still struggling.

It definitely makes sense to get your vitamin & mineral levels tested before you start supplementing, and unfortunately my doctors never recommended this approach at the time of my diagnosis, nor did they ever recommend any supplementation. Unfortunately this led to many years of dealing with gluten ataxia issues that were mostly only resolved decades later via supplementation. Just FYI, and this is only addressing the most common supplements:

Vitamins and Minerals Generally Safe in Excess of Recommended Daily Allowance (RDA):

• Vitamin C (Ascorbic Acid): Excess vitamin C is usually excreted in the urine and is considered safe in higher doses. However, very high doses may cause digestive upset in some individuals.
• Vitamin B1 (Thiamine): Water-soluble, excess thiamine is generally excreted through urine. It is considered safe in higher doses but consult with a healthcare professional.
• Vitamin B2 (Riboflavin): Water-soluble, excess riboflavin is excreted in the urine and is generally safe in higher doses.
• Vitamin B3 (Niacin): Water-soluble, niacin has a well-defined upper limit, but moderate excess is often excreted. Consultation with a healthcare professional is advisable.
• Vitamin B5 (Pantothenic Acid): Water-soluble, excess pantothenic acid is generally excreted through urine and considered safe in higher doses.
• Vitamin B7 (Biotin): Water-soluble, excess biotin is typically excreted and is considered safe in higher doses.
• Vitamin B12 (Cobalamin): Water-soluble, excess B12 is typically excreted in the urine and is considered safe in higher doses. Consultation with a healthcare professional is advisable.
• Choline: While not a true vitamin, choline is water-soluble, and excess is usually excreted. It's considered safe in higher doses but consult with a healthcare professional.

Vitamins and Minerals with Potential for Toxicity in Excess of Recommended Daily Allowance (RDA):

• Vitamin A (Retinol): Excessive vitamin A intake, especially from supplements, can lead to toxicity, causing symptoms like nausea, dizziness, and, in severe cases, organ damage.
• Vitamin B6 (Pyridoxine): Long-term use of high doses of Vitamin B6, typically above 200 mg per day, can lead to toxicity. Symptoms of Vitamin B6 toxicity include nerve damage (neuropathy), which can cause pain, numbness, and difficulty walking. The condition is usually reversible once supplementation is stopped, but in severe cases, nerve damage may be permanent.
• Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
• Vitamin D -  While moderate excess may be excreted, prolonged high doses can lead to vitamin D toxicity, resulting in hypercalcemia, kidney damage, and other complications.
• Vitamin E (Tocopherols): Excess vitamin E is usually excreted, but high doses from supplements may have adverse effects. Obtaining it through a balanced diet is preferable.
• Vitamin K: Excess vitamin K from supplements can interfere with blood thinning medications and cause issues in some individuals.
• Iron: Excessive iron intake, especially from supplements, can lead to iron toxicity, causing symptoms like nausea, abdominal pain, and, in severe cases, organ failure.
• Zinc: While zinc is essential, excessive intake can lead to zinc toxicity, affecting the immune system and causing digestive issues.
• Copper: High copper levels, often from supplements, can lead to toxicity, causing symptoms such as nausea, vomiting, and liver damage.
• Selenium: Excessive selenium intake, especially from supplements, can lead to selenosis, causing symptoms like hair loss, gastrointestinal issues, and neurological problems.

[GardeningForHealth]

On 9/2/2024 at 10:22 AM, trents said:

Thyroglobulin antibody: nearly 1,000 (ref: 0.0 to 0.9)!

What's with that? It's super high! Do you have Hashimotos? Maybe you said that already somewhere back in this long thread.

I am not sure; I tried looking up an objective diagnostic criteria for diagnosis of Hashimoto's, and it seems to be subjective, which is disappointing. I was expecting to see criteria such as "If TSH is above this, and if T4 is below this, and if T3 is below this, and if antibodies are above that, then a diagnosis of Hashimoto's Thyroiditis is called for," but I didn't find that.

On 9/2/2024 at 10:26 AM, Wheatwacked said:

The only way is to keep a food journal, ingredients and quantity and calculate your daily intakes.  "Eating the rainbow" is a nice panacea but is just guessing.  Blood tests show blood level, not cellular content.

I began a food journal on 5/30 and am seeing some patterns, but I'm reacting to foods that are considered "safe" on the AIP diet, which is odd. And if blood tests cannot be relied upon to identify vitamin/mineral deficiencies, that is disappointing as well; there needs to be objective standards and tests that we can rely on in order to determine deficiencies/excesses.

On 9/2/2024 at 12:44 PM, Scott Adams said:

Vitamins and Minerals with Potential for Toxicity in Excess of Recommended Daily Allowance (RDA):

• Vitamin A (Retinol): Excessive vitamin A intake, especially from supplements, can lead to toxicity, causing symptoms like nausea, dizziness, and, in severe cases, organ damage.
• Vitamin B6 (Pyridoxine): Long-term use of high doses of Vitamin B6, typically above 200 mg per day, can lead to toxicity. Symptoms of Vitamin B6 toxicity include nerve damage (neuropathy), which can cause pain, numbness, and difficulty walking. The condition is usually reversible once supplementation is stopped, but in severe cases, nerve damage may be permanent.
• Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
• Vitamin D -  While moderate excess may be excreted, prolonged high doses can lead to vitamin D toxicity, resulting in hypercalcemia, kidney damage, and other complications.
• Vitamin E (Tocopherols): Excess vitamin E is usually excreted, but high doses from supplements may have adverse effects. Obtaining it through a balanced diet is preferable.
• Vitamin K: Excess vitamin K from supplements can interfere with blood thinning medications and cause issues in some individuals.
• Iron: Excessive iron intake, especially from supplements, can lead to iron toxicity, causing symptoms like nausea, abdominal pain, and, in severe cases, organ failure.
• Zinc: While zinc is essential, excessive intake can lead to zinc toxicity, affecting the immune system and causing digestive issues.
• Copper: High copper levels, often from supplements, can lead to toxicity, causing symptoms such as nausea, vomiting, and liver damage.
• Selenium: Excessive selenium intake, especially from supplements, can lead to selenosis, causing symptoms like hair loss, gastrointestinal issues, and neurological problems.

I see that you wrote that back in 2022; you were ahead of the game. New guidance came out in 2023 that showed that selenium in excess of 255 mcg / day is an overdose, and it looks like the National Institutes of Health has not updated their guidance of 400 mcg / day, as per the below:  https://ods.od.nih.gov/factsheets/Selenium-HealthProfessional/

Quote

In 2023, the Panel on Nutrition, Novel Foods and Food Allergens of the European Food Safety Authority released a scientific opinion on the ULs for selenium [117]. Based on systematic reviews that examined associations between excess selenium intake and clinical effects, specifically alopecia, the panel set an upper limit for selenium of 255 mcg/day for all adults

I just recently received the Certificate of Analysis from the manufacturer for my selenium supplement that I had been taking, and it says it actually contains 120% of the stated amount of selenium per capsule. Since the capsule is 200 mcg, this means that each capsule actually contained 240 mcg. This would have only allowed 15 mcg / day from my diet before I reached the safe upper limit in the European Food Safety Authority's opinion on the UL of selenium. I definitely got more than 15 mcg / day from my diet; I had been eating a diet high in fish, sea vegetables, fruits, meats, vegetables, nuts and seeds.

On 8/23/2024 at 4:57 AM, knitty kitty said:

@GardeningForHealth,

Yes, an allergic response is different from an autoimmune response, but mast cells are involved in each. 

Mast cells can differentiate and do different responses to different stimuli.  Some mast cells do release histamine when presented with an antigen by an IgE antibody.  Many mast cells line the digestive tract.  Recent findings show that mast cells can react to different parts of gluten.  Mast cells then release histamine and inflammatory cytokines which stimulate the autoimmune response and the gastrointestinal symptoms.  

Keep us posted on your progress.

Interesting Reading:

Mast cells are associated with the onset and progression of celiac disease

https://pubmed.ncbi.nlm.nih.gov/27619824/

And...

Coeliac Disease and Mast Cells

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678566/

I hope it's something as simple as mast cells going haywire, because then it should be something I can "tame" by using antihistamines. I just took 10mg loratadine; if I take this dose daily for 30 days, maybe this will help calm things down and reduce the brain fog and fatigue.

[GardeningForHealth]

On 8/23/2024 at 4:57 AM, knitty kitty said:

@GardeningForHealth,

Yes, an allergic response is different from an autoimmune response, but mast cells are involved in each. 

Mast cells can differentiate and do different responses to different stimuli.  Some mast cells do release histamine when presented with an antigen by an IgE antibody.  Many mast cells line the digestive tract.  Recent findings show that mast cells can react to different parts of gluten.  Mast cells then release histamine and inflammatory cytokines which stimulate the autoimmune response and the gastrointestinal symptoms.  

Interesting Reading:

Mast cells are associated with the onset and progression of celiac disease

https://pubmed.ncbi.nlm.nih.gov/27619824/

And...

Coeliac Disease and Mast Cells

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678566/

I was having trouble integrating this into my understanding of the pathogenesis of Celiac Disease, but I think I've managed to make sense of it now. Let me know what you think:

TLDR version:

Gut dysbiosis --> Zonulin increase --> Intestinal permeability --> Mast cells in the lamina propria encounter gluten and are sensitized to gluten --> Mast cells cause damage to enterocytes and eventually recruit the adaptive arm of the immune system into the situation --> TTG antibodies are formed

--------------------------------

From your link "Celiac Disease and Mast Cells:" "The authors specifically identified intestinal MCs by CD117 staining and demonstrated that MCs accumulate in the intestinal mucosa of both NCGS and celiac disease patients."

From this study, it seems that mast cells of the innate arm of the immune system are causing the damage seen in Marsh 1 through Marsh 3; is the adaptive arm of the immune system doing any of this damage to the gut lining, or is it only the mast cells doing it?

The study seems to indicate that, in Celiac Disease, mast cells are involved first, before the adaptive arm of the immune system gets involved. It would seem then that perhaps NCGS is a precursor to Celiac Disease.

Fascinating. In adults, perhaps the progression to Celiac Disease is a longer process than it is for infants/young children in Dr. Fasano's CDGEMM study, who progressed to Celiac Disease in a matter of months (I linked to the video about this on page 2 of this thread). Perhaps in adults, the march to Celiac Disease begins with a virus such as EB, or heavy doses of antibiotics that kill one or more of the critical "good, protective" species, which then leads to the rest of the progression to celiac disease.

Dr. Fasano's CDGEMM study revealed that in the infants and young children enrolled in the study, gut dysbiosis happens first, then next comes an increase in zonulin. 

---------------------------------

Background (skip if you already know this stuff):

The microbiome is responsible for instructing our immune system and our gut on how to respond to stimuli found in the gut. When our microbiome is in a state of dysbiosis, the immune system learns the wrong lessons on how to respond to stimuli.

Zonulin is secreted by the enterocytes in the gut in response to stimuli in the diet or microbiota. Dr. Fasano states at 26:33 in the video I posted on page 2 of this thread that the protective elements (good species of bacteria) in the microbiome instruct the gut not to attack when gluten is present. But when these protective species of bacteria disappear, our guts then treat gluten as a foreign invader and launch an attack, leading to Celiac disease just a few months later.

Zonulin opens up the tight junctions of the intestines, allowing contents inside the intestines to leak down into the lamina propria and/or submucosa, where mast cells and other elements of both the innate and adaptive immune system reside. The mast cells can come in through the openings created by zonulin, triggering a cascade of immune responses.

---------------------------------

You know, all those food sensitivity tests that check for IgA and IgG levels of antibodies to different foods like rice, casein, etc, are just checking the adaptive immune system's response to these foods; they are not even looking at the possibility that mast cells could be binding to food antigens as well. Because the only way you can do that is get a bunch of people on an AIP diet, then do a challenge for each of these foods one at a time, and take a biopsy.

Oh interesting, when I search for mast cells involved with gut inflammation I start seeing "Refractory Celiac, IBD, IBS, Crohn's Disease" coming up in my the results.............this opens up new topics to look into.........

[GardeningForHealth]

On 9/2/2024 at 10:26 AM, Wheatwacked said:

Shows how accuracy in words is important.  One souce says "high levels of TgAb (≥40 IU/mL) are linked to increased rates of thyroid cancer).  Don't freak out. Your high level TgAb = 1000 IU/mL indicates Hashimoto, not cancer.

Your Thyroglobulin antibody: nearly 1,000 (ref: 0.0 to 0.9) is an indicator of autoimmune Hashimoto.   It's the most common symptom of hypothyroidism, or underactive thyroid.  

I thought that TgAB was actually the one linked with cancer. "Thyroglobulin antibodies are also measured regularly in the follow-up of thyroid cancer." https://www.btf-thyroid.org/thyroid-antibodies-explained

Also, my sister had thyroid cancer and had to have her thyroid removed.

Quote

Low iodine intake will not necessarily show up in blood tests.

Then what is an objective way to determine low iodine status?

Quote

 

medium urinary iodine concentration 

 

Is this a good, objective test?

Quote

 

Some reading:

The Wolff-Chaikoff Effect

Iodine: Good or Bad for Thyroid Health?  notice that Dr Wentz does not recommend against low dose iodine, only super high doses.

Iodine Insufficiency in America: The Neglected Pandemic

Iodine and Iodine Deficiency: A Comprehensive Review of a Re-Emerging Issue

Iodine Fact Sheet for Health Professionals

The Health Benefits of Selenium & Its Relationship with Iodine

 

I eat sushi nori wraps weekly in my diet, as well as canned sardines or other fish or shellfish at least once weekly. The salt I eat is non-iodized pink salt.  But it looks like, according to your NIH link, I may not be getting enough iodine on a daily basis. I may need to use more iodized salt.

[Wheatwacked]

On 9/6/2024 at 4:01 PM, GardeningForHealth said:

I eat sushi nori wraps weekly in my diet, as well as canned sardines or other fish or shellfish at least once weekly. The salt I eat is non-iodized pink salt.  But it looks like, according to your NIH link, I may not be getting enough iodine on a daily basis. I may need to use more iodized salt.

I tried that but it wasn't enough.  Liquid Iodine drops.  

In the 1970s, the median urinary iodine (UI) level in the United States was 320 mcg/L, which indicated adequate dietary iodine intake. However, the median UI level dropped by 50% between the 1970s and 1990s. This decline was likely due to a decrease in salt and egg consumption and the removal of iodate conditioners from breads. 

Quote

NIH: Iodine Fact Sheet for Health Professionals

Iodine status is typically assessed using urinary iodine measurements. Urinary iodine reflects dietary iodine intake directly because people excrete more than 90% of dietary iodine in the urine [4]. Spot urine iodine measurements are a useful indicator of iodine status within populations [28,29]. However, multiple 24-hour urinary iodine or multiple spot urine measurements are more accurate for individuals [4,30].

Quote

Specifically VD3 [vitamin D3] interrupts the MyD88-dependent zonulin release signaling cascade,

Vitamin D is a health-promoting molecule involved in different biological processes and potentially preserving the tight-junction structure through a MyD88-related downregulation of zonulin.  Vitamin D3 Versus Gliadin: A Battle to the Last Tight Junction

[knitty kitty]

@GardeningForHealth,

How are things going for you?  

I found another topic you might be interested in...

To Be or Not to Be a Pathogen: Candida albicans and Celiac Disease

https://pmc.ncbi.nlm.nih.gov/articles/PMC6906151/

[GardeningForHealth]

So, an update...whatever is going on with me goes way beyond gluten. I have been keeping a food diary since June 2024, and I now have a long list of foods that I reacted to. My methodology was to test a specific food several times to verify a reaction. Here are the results:

Anything that comes out of a sealed package (can, jar, sealed bag) triggers a reaction. The reaction is always the same: brain fog, fatigue, dizziness, and headache, significant enough to prevent working, and lasting for at least 3 days. This includes all "gluten-free" or "organic" packaged items except for 2 items: a certain brand of sweet potato chips, and another brand of plantain chips. 

It is absurd and ridiculous that these items cause a reaction, but I have tested them at least twice each, and they in fact do cause brain fog, fatigue, and dizziness significant enough to prevent me from being productive. When my diet includes the foods in the below list for a whole month, I experience ~20+/- bad days and 10 or fewer good days during that month:

• Tea from any grocery store
• Tea, organic
• Tea, grown in USA, never-sprayed, loose leaf
• Dairy
• Organic catchup
• Any and all brands of gluten-free breads and dessert items
• Cassava flour, any brand
• Gluten-free flour, any brand
• Cucumbers from a grocery store, but not from my garden (likely due to Apeel coating)
• Most apples (likely due to Apeel coating)
• Zucchini (likely due to Apeel coating)
• Plums (likely due to Apeel coating)
• Potatoes 
• Sausage
• Any processed meat
• Bottled spices 
• Gluten-free dairy-free ice cream
• Rice, any brand, even after washing 3 times

Environmental non-food triggers that will cause the exact same symptoms:

• Smoke from a fire
• Strong cleaning chemical fumes

And the list goes on. So here are my safe foods; this is all I can eat now (when I eat this way throughout a whole month, I experience over 20 good productive days and 5 or so bad days):

• Fresh unprocessed meat in their whole forms such as chicken, beef, pork, fish, shrimp (yes, I cook it, I do not eat raw meat)
• Fresh unprocessed vegetables and fruits (except the ones above) in their whole form 
• Packaged sweet potato chips of a certain brand
• Packaged plantain chips of a certain brand
• Anything I grow in my garden

Now, what in the world is this? I've never heard of something this bizarre and wouldn't have believed it unless this had been my own personal experience. I have delayed posting this here, because I haven't been able to make sense of it myself.

[Scott Adams]

Your experience sounds incredibly challenging and frustrating. It’s impressive that you’ve been so methodical in tracking your triggers and finding safe foods. While it may feel bizarre, sensitivities like these can sometimes point to underlying conditions like chemical sensitivities, histamine intolerance, or even specific food additives. Have you considered consulting with a functional medicine practitioner or allergist who might specialize in these types of issues? You’ve done a lot of the hard work already with your food diary, and that could provide valuable insights for a professional to help you further.

[knitty kitty]

@GardeningForHealth,

On my journey, I found following the Autoimmune Paleo Diet most helpful in reducing reactions to various foods.  It's very restrictive, but it really helps improve gut health.  It's worth the effort for a few weeks or months.

Tea from any grocery store; Tea, organic; Tea, grown in USA, never-sprayed, loose leaf

Tea contains TANNINS which can inactivate Thiamin resulting in Thiamin deficiency.  Tannins inhibit the absorption of other vitamins and minerals, especially iron. Tannins can inactivate digestive enzymes.  So drink tea between meals.  Choose a tea with lower levels of tannin, like green tea or Oolong tea.  Oolong tea contains amino acid Theanine which reduces inflammation in the digestive tract.

Dairy; Rice, any brand, even after washing 3 times

Many people develop Lactose intolerance because damaged villi in the intestinal lining of the digestive tract cannot produce the enzyme Lactase needed to digest the sugar in dairy, Lactose.  

Many people with Celiac Disease react to the protein Casein the same as they react to the protein Gluten.  This is because both Casein and Gluten, as well as the protein in rice, carry a similar segment of a protein building block chain (33 mer peptide) that triggers the autoimmune response in Celiac Disease.  Basmati rice is less likely to carry this protein chain and may be better tolerated.  Don't wash rice before cooking.  The added vitamins get washed away.  Some of those grains of rice are extruded vitamins.  They dissolved into the cooking water and are reabsorbed into the grains as the rice cooks.

Organic catchup, Potatoes;

Tomatoes are a member of the Nightshade vegetables which have been shown to increase gastrointestinal permeability and "leaky gut syndrome."  Potatoes, Peppers and Eggplant also belong to the Nightshades, and should be avoided until healed.  Catsup usually is acidic which can be irritating to the digestive system.

Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour

Often these contain cross contamination with gluten.  @Scott Adams recently posted a new article about this.  Gluten free products are not enriched with vitamins and minerals needed to digest and process them.  They are high in insoluble fiber and saturated fats.  These may also contain microbial transglutaminase, see below.

Sausage, Any processed meat

These foods contain microbial transglutaminase, a flavor and texture enhancer, called "meat glue" in the food processing industry, which triggers and provokes anti-gluten antibodies to attack the microbial transglutaminase as well as the tissue transglutaminase produced by our own bodies as with Celiac Disease.  We have articles about microbial transglutaminase, too.  Cassava also contains Thiaminase, an enzyme which destroys Thiamin.

Cucumbers from a grocery store, but not from my garden, Most apples, Zucchini, Plums

Cucumbers, like these other fruits and veggies, contain lots of soluble fiber, pectin, which intestinal bacteria can ferment and then make short chain fatty acids, which are beneficial.  So that's a good thing.  However, commercially produced breeds of veggies and fruits may contain higher levels of pectins than historically home grown varieties.  Excess consumption of pectins can result in gas, bloating and diarrhea.  

Bottled spices 

There's an article (perhaps @Scott Adams can help us find, please) about how some spices can cause gastrointestinal symptoms.

Gluten-free dairy-free ice cream

These can cause reactions if one reacts to oats.  Products made from nuts or nut milks may contain high levels of lectins which are hard to digest and can cause all the usual symptoms.  

Smoke from a fire; Strong cleaning chemical fumes

These contain Sulfites.  Developing a hyperensitivity to Sulfites is possible in Celiac Disease.  We can be low in vitamins and minerals needed to process Sulfites.  I have Hypersensitivity Type Four where the immune system identifies Sulfites as something to be attacked.  Celiac Disease is another Hypersensitivity Type Four disorder.

Packaged sweet potato chips; Packaged plantain chips;  Rice; Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour; Gluten-free dairy-free ice cream

A High Carbohydrate diet can lead to Small Intestinal Bacterial Overgrowth (SIBO).  Adopting a Paleo diet like the AIP diet is a great way to change your gut biome without using antibiotics which kill off the bad with the good bacteria.  Taking probiotics may not be very effective as long as SIBO bacteria are entrenched in the digestive tract.  You change what you eat and you change what grows inside you.  You starve out the bad SIBO bacteria, repopulate and feed the good ones.  Supplementing with Benfotiamin helps because thiamine has antibacterial properties that keeps the bad bacteria in check and benefits the good bacteria.  Benfotiamin is needed to process all those carbs turning them into energy instead of them turning to fat.  

I hope this has been helpful.

[GardeningForHealth]

15 hours ago, Scott Adams said:

Your experience sounds incredibly challenging and frustrating. It’s impressive that you’ve been so methodical in tracking your triggers and finding safe foods. While it may feel bizarre, sensitivities like these can sometimes point to underlying conditions like chemical sensitivities, histamine intolerance, or even specific food additives. Have you considered consulting with a functional medicine practitioner or allergist who might specialize in these types of issues? You’ve done a lot of the hard work already with your food diary, and that could provide valuable insights for a professional to help you further.

Most doctors would dismiss the experiences I have described here, including my food diary, as somatic reactions, and begin to think of me as a hypochondriac--so I am very careful about what I share with doctors. 

Most of the research done so far in the medical field has focused on Type I hypersensitivity: classic IgE-mediated allergic responses. I wasn't even aware of Type IV (or had forgotten about it) until knittykitty reminded me about it with her post. But even when talking about an allergist, does an allergist understand that Celiac is a Type IV hypersensitivity reaction? And if so, would an allergist believe or understand that other foods can cause a Type IV hypersensitivity reaction? And if so, are there objective tests that prove these non-gluten reactions, such as a hypothetical Type IV hypersensitivity reaction to apples, plums, sausage, cassava flour, etc? I do not believe these tests exist right now. 

And lets say that these tests did exist, and I could take them, and obtain objective proof (besides my food diary) of my reactions to these foods. Now what? Is there a treatment besides avoiding those foods? I am not aware of it. I would simply be told: avoid all of those foods forever. 

And that is not reasonable either. Avoid all of those foods forever? Really? There are times that I feel malnourished. I then will eat a food from the bad list, and suddenly feel much better nourished, but then I have a reaction that begins the next day or the day after that, and lasting many days afterwards. The reaction is always the same: brain fog, fatigue, dizziness, headache, significant enough to impair any productivity.

I have been on this elimination diet for about 3 months now, but each time I attempt to re-introduce a food item that I initially reacted to, I have the same reaction. Therefore, I do not believe it will ever be safe in the future to re-introduce a food back into my diet safely. This is a big problem with no solution.

[knitty kitty]

Hashimoto's is a type four hypersensitivity.  

Read what this doctor did about hers...

https://thyroidpharmacist.com/articles/food-sensitivities-and-hashimotos/

She adopted a Paleo diet.

Once you get your inflammation down, and your nutrients up, your body's immune system can calm down and quit reacting to every little thing.

Edited December 11, 2024 by knitty kitty
Typo correction

[Scott Adams]

10 hours ago, knitty kitty said:

Bottled spices 

There's an article (perhaps @Scott Adams can help us find, please) about how some spices can cause gastrointestinal symptoms.

 I think you mean this one.

[GardeningForHealth]

An update to my long thread for any curious minds out there:

Adopting ever more restrictive diets did not solve my problem because those diets failed to reduce the food hypersensitivity. Paleo diets and such do not work in all cases to reduce food hypersensitivities. They did not work in my case, as my body remained hypersensitive and then got worse.

However, I did find out why. I was living in a home that had mold and mycotoxins, and I moved out. It has been over 6 months now since I have been moved out, and I have been able to stop the strict diet and eat everything but gluten and not have a food reaction. I am even drinking tea without a problem and occasionally trying chocolate again with much less problem. My food reactions have almost stopped.

So, while I have solved the food hypersensitivities problem, the fatigue, brain fog and dizziness continue, and while those are still significant problems, they less than they were before. 

I also still have super high levels of thyroid antibodies as of a recent blood test, so this problem did not get solved by getting out of the mold and mycotoxins either.

[GardeningForHealth]

On 9/2/2024 at 12:44 PM, Scott Adams said:

It definitely makes sense to get your vitamin & mineral levels tested before you start supplementing, and unfortunately my doctors never recommended this approach at the time of my diagnosis, nor did they ever recommend any supplementation.

This is what brought me back to this thread. I got tested and was borderline low in calcium and vitamin D, and I recalled the intense reactions I had the last time I tried taking vitamin supplements. Now that my body is far less sensitized, I may try again, but am very wary. Perhaps the folks here on this forum can advise me. 

I live in the USA and do not trust any brands of vitamins sold to the USA market, since none are FDA regulated. My primary care doctor does not want to prescribe me a calcium and Vitamin D supplement (which would be FDA regulated), so I would like to purchase outside the US from brands that are regulated, but have no idea how to go about it or where to look.

Any advice is much appreciated. Thanks

[Aretaeus Cappadocia]

Have you ever been tested for allergy/sensitivity to nickel? 

"Ni-induced clinical manifestations observed in the general population are also frequent among Celiac Disease patients after prolonged gluten-free diet. These patients are often wrongly labeled as Gluten-free Diet Non Responders or affected by Refractory Celiac Disease. Corn-based flours and various legumes high consumption, in fact, leads to greater Nickel sensitivity and symptoms characteristically improve after a low-Ni diet(Borghini et al., 2020)."

https://www.sciencedirect.com/science/article/pii/S0147651321006047

(I saw this thread pop up and only read a small part of it, so apologies if my suggestion was already covered.)

[Aretaeus Cappadocia]

7 minutes ago, Aretaeus Cappadocia said:

Have you ever been tested for allergy/sensitivity to nickel? 

"Ni-induced clinical manifestations observed in the general population are also frequent among Celiac Disease patients after prolonged gluten-free diet. These patients are often wrongly labeled as Gluten-free Diet Non Responders or affected by Refractory Celiac Disease. Corn-based flours and various legumes high consumption, in fact, leads to greater Nickel sensitivity and symptoms characteristically improve after a low-Ni diet(Borghini et al., 2020)."

https://www.sciencedirect.com/science/article/pii/S0147651321006047

(I saw this thread pop up and only read a small part of it, so apologies if my suggestion was already covered.)

one more reference:

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

[GardeningForHealth]

40 minutes ago, Aretaeus Cappadocia said:

one more reference:

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

This is quite interesting and it wouldn't surprise me, since we Celiacs seem to be hyper sensitive to lots of things due to substances entering our bodies through the overly permeable intestinal lining. How much does a type IV nickel hypersensitivity test (not an allergy test) cost? And what is the test? And how to get it? 

[Aretaeus Cappadocia]

12 minutes ago, GardeningForHealth said:

This is quite interesting and it wouldn't surprise me, since we Celiacs seem to be hyper sensitive to lots of things due to substances entering our bodies through the overly permeable intestinal lining. How much does a type IV nickel hypersensitivity test (not an allergy test) cost? And what is the test? And how to get it? 

I wasn't trying to distinguish 2 types of reaction. I think there is only the Type IV reaction that some call hypersensitivity but others might call allergy.

I don't know the cost, but I was triggered to look this up after reading your thread and the discussion of Type IV reactions because we found out that my (now) celiac child had nickel sensitivity with the first baby clothes we used that had metal snaps (25+ years ago). We would have to cover the snaps in nail polish to avoid a contact rash. As an adult, same child initially did great on gluten free diet but now seems to be not as good. We will be following up on this idea.

If you have access to an immunologist or a rheumatologist, I would ask them to check you. If you don't, then ask your regular doctor. If you want a quick and dirty (ie, unreliable) DIY, find some cheap metal snaps and keep them next to your skin pretty constantly for several days or a week. Stop if rash/itching/burning develops. In our case we initially thought it was ring worm because of the pattern and type of rash.

https://www.mayoclinic.org/diseases-conditions/nickel-allergy/symptoms-causes/syc-20351529

 

[Aretaeus Cappadocia]

3 minutes ago, Aretaeus Cappadocia said:

I wasn't trying to distinguish 2 types of reaction. I think there is only the Type IV reaction that some call hypersensitivity but others might call allergy.

I don't know the cost, but I was triggered to look this up after reading your thread and the discussion of Type IV reactions because we found out that my (now) celiac child had nickel sensitivity with the first baby clothes we used that had metal snaps (25+ years ago). We would have to cover the snaps in nail polish to avoid a contact rash. As an adult, same child initially did great on gluten free diet but now seems to be not as good. We will be following up on this idea.

If you have access to an immunologist or a rheumatologist, I would ask them to check you. If you don't, then ask your regular doctor. If you want a quick and dirty (ie, unreliable) DIY, find some cheap metal snaps and keep them next to your skin pretty constantly for several days or a week. Stop if rash/itching/burning develops. In our case we initially thought it was ring worm because of the pattern and type of rash.

https://www.mayoclinic.org/diseases-conditions/nickel-allergy/symptoms-causes/syc-20351529

 

If you get the rash, you know you have a nickel sensitivity but you don't know if nickel in food is causing you problems. If you don't get a rash, you don't really know anything new, except that it is less likely you have a nickel sensitivity.

[GardeningForHealth]

56 minutes ago, Aretaeus Cappadocia said:

If you get the rash, you know you have a nickel sensitivity but you don't know if nickel in food is causing you problems. If you don't get a rash, you don't really know anything new, except that it is less likely you have a nickel sensitivity.

What is the test that shows if nickel in the food is causing a problem?

[Aretaeus Cappadocia]

11 minutes ago, GardeningForHealth said:

What is the test that shows if nickel in the food is causing a problem?

I don't know - I haven't read very far yet. When I get there I'll try to remember to post.

[Aretaeus Cappadocia]

30 minutes ago, GardeningForHealth said:

What is the test that shows if nickel in the food is causing a problem?

OK, I should be doing something else rn but I couldn't resist doing some fast research.

The gateway test would almost certainly be the patch test where they stick a patch on your back for 48 hr to see if you get a rash.

"Diagnosis of SNAS begins with a thorough clinical history documenting ACD.12 A positive nickel patch test is nearly always part of the diagnosis but would not necessarily indicate systemic involvement. Reduction in symptoms while following a low-nickel diet is considered diagnostic of SNAS. After 4-6 weeks on a nickel-free diet, patients may undergo the oral provocation test, commonly known as the oral nickel challenge, which is considered the gold standard for SNAS diagnosis.12 Diagnosis is confirmed if consumption of progressively increasing concentrations of nickel under controlled conditions reproduces the patient’s systemic symptoms"

https://www.sciencedirect.com/science/article/pii/S2667036426000038

Other tests are mentioned in the following reference (although I would rely more on the ScienceDirect reference in the previous paragraph).

https://www.gianlucatognon.com/nickel-allergy-diagnosis-and-desensitization/

If you want to research more than this, focus your search on "Systemic nickel allergy syndrome (SNAS)" to weed out a lot of hits that wouldn't be relevant. This is a relatively new concept that was first described maybe 15 yr ago.

 

[trents]

"In addition to the better known Ni-ACD, there is also a clinical condition defined Nickel Allergic Contact Mucositis (Ni-ACM) (Borghini et al., 2017) that can affect sensitized subjects after the ingestion of Ni-containing foods. Tomatoes, mushrooms, cocoa, coffee, legumes, corn, soy, onion and many other foods are rich in Ni"

Like so many other potential food enemies of the celiac population, effectively reducing nickel intake would seem to be impossibly limiting. I mean, you've got to eat something to survive.