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 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