10 years later, my celiac is progressing

[trents]

I think one thing that needs to happen is a standardization of testing method. More research needs to be done to determine the most reliable testing method and then regs need to be put in place mandating that this method is applied industry wide by those using gluten-free and CFGF labels. So far, it seems that the G12 ELISA test is the best candidate.

[Scott Adams]

3 hours ago, GardeningForHealth said:

In this thread, I initially assumed that I was experiencing "new" food sensitivities to non-gluten foods over time, and at an increasing rate. However, now I am re-assessing this assumption and asking myself, are these sensitivities actually due to ongoing exposures to gluten instead? 

I think we are uncovering important information here on this website about the state of gluten-free labeling and the organizations who are supposed to support consumers of gluten-free foods. What do we, as Celiacs and NCGS folks, need? We need clarity. We need to know if the foods we are eating contain gluten. Period!

And now we know that we cannot necessarily trust any company's marketing language or label; we need testing.

But that raises a new question; which testing(s) can we put our trust in? Are there tests which are more accurate than others? I would like to see more than one scientist who has years of experience in performing a variety of these tests discuss this topic publicly. However, even if that does not happen, the answer seems to be in doing more than one kind of ELISA test. For example, an R5 ELISA test and a G12 ELISA test.

Now, this raises yet another question that I am still trying to gain clarity on: The G12 ELISA test by Romer Labs when performed without a diluting protein. I want to talk about that now. 

This particular test claims in its brochure the following: 

I would be curious how others are interpreting this statement, but to me this seems to imply the following:

• The R5 test is not as accurate as the G12 test, because R5 was created against rye secalin, and therefore its detection of wheat gliadins may be weaker than G12's detection of wheat gliadins.
• The G12 test is more accurate in its ability to detect proteins that are problematic for those with Celiac

The same brochure also states the following:

Recently, I learned that about 10% of Celiacs react to oats (gluten-free, pure oats). More info on that here. In light of that information, it makes this G12 test even more remarkable, as this test picks that up.

Now I want to talk about "non-specific binding." Scott Adams states in this post:

My question is, why would we need to dilute the test by adding a protein? If this G12 test is finding immunotoxic sequences so accurately that it is able to verify the fact that some Celiacs react to oats, perhaps this test is correct in identifying potentially immunotoxic sequences in chocolate and soy as well; maybe we should not disregard this test binding to those proteins found in chocolate and soy; perhaps we need to take a second look at that and study that to see if Celiacs are also reacting to immunotoxic proteins found in chocolate and soy. Can these proteins trigger damage to the villi as well?

I finally had to stop eating chocolate, as it caused a reaction every time, no matter what brand of chocolate that I ate. I am willing to subject myself to testing to see if chocolate is causing villi damage. 

We need solid, verified answers that are backed by scientific tests. 

Is Celiac Disease expanding? It always seemed arbitrary to me that the definition of Celiac Disease stopped with wheat, barley and rye. Why just those three? Now we find out that 10% of Celiacs react to oats--and perhaps that number is underestimated? And I have now seen it being discussed on this forum that, cow's milk proteins are also causing a Celiac-like response.

 

More research is being done in this area, but much more needs to be done. Cross-reactivity is well known:

and the fact that certain oat varieties seem to also trigger reactions in some but not all people with celiac disease is also well known (and the G12 test can detect this type of oats, which is new news to me).

[Scott Adams]

PS - I agree with your interpretation about the G12 test being more accurate for the 33-mer which is the portion of gluten in wheat that causes the immune reaction and gut damage. The info in that brochure, along with the answers I got back from Dr. Fagen at HRI, led me to write the article--I don't believe that the Gluten Free Watchdog's analysis holds much water after you know more about the G12 test.

[trents]

Do we know any specifics about which oat varieties elicit a gluten-like response in the sub population of celiacs in question?

[Scott Adams]

There have been studies done, and I believe certain gluten-free brands try to use the type that don't trigger reactions:

 

 

[knitty kitty]

@GardeningForHealth,

Have you tried cutting out of your diet all processed gluten free facsimile foods to see if your symptoms improve?  

I found following a low histamine Paleo diet (the Autoimmune Protocol Diet) extremely helpful in lowering histamine levels, lowering inflammation, and calming mast cells.  Supplementing with essential vitamins and minerals to boost absorption is beneficial as well.  The Gluten Free diet can be low in essential nutrients.  

Hope this helps!

[GardeningForHealth]

On 8/14/2024 at 7:59 AM, knitty kitty said:

@GardeningForHealth,

Have you tried cutting out of your diet all processed gluten free facsimile foods to see if your symptoms improve?  

I found following a low histamine Paleo diet (the Autoimmune Protocol Diet) extremely helpful in lowering histamine levels, lowering inflammation, and calming mast cells.  Supplementing with essential vitamins and minerals to boost absorption is beneficial as well.  The Gluten Free diet can be low in essential nutrients.  

Hope this helps!

I am unsure if histamines have anything to do with it, as histamines are released when IgE antibodies bind to an antigen; histamines are part of an allergy response.

From what I can tell, an allergic response is not going to feel like a gluten exposure for me. A small gluten exposure causes brain fog, muscle weakness, headache, fatigue, and a large gluten exposure such as a slice of bread or a tortilla will cause all of that but also vomiting.

I am becoming more skeptical and cautious about "gluten-free" foods. I am about to go full AIP, which I really didn't want to do. But today I am having a reaction to a meal I cooked last night that contained spices in it (ginger and curry powder). 

Also, regarding supplements, I was to the point where I was very sick with fatigue and brain fog nearly every day and forced to take mid-day naps despite sleeping 10 hours a night, until I came off all my supplements. I am now on Day 33 of going off all of my supplements, and most of those days I have felt better than I have in a long time. The brain fog, fatigue, and headaches lifted and now I can really tell when I get an exposure to something my body disagrees with. By the way, the supplements have the words "gluten-free" right on the bottles.

My pile of quarantined foods is growing. I put the quarantined foods, including the supplements, into grocery bags and labeled them with a marker "Reacted; possibly contaminated with gluten."

[knitty kitty]

@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.  

I found the Autoimmune Protocol Diet just wonderful!  It's like a holiday for the intestines, especially when I included only low histamine foods.  After a few weeks, I could start trialling other foods to check for reactions.  Sometimes it was two steps forward, one step back, but the AIP diet really made a big difference.

Ginger is calming, but red pepper (an ingredient in curry powder) provokes Mast Cells to release histamine.  

I'm very curious to know which supplements you were taking.  You could Personal Message me if you would like.   I always like to see what others are taking.

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/

[GardeningForHealth]

Interesting, it does appear that histamines play a role; I need to spend some more time reading that, but I am having significant brain fog and fatigue today. 

I have been doing elimination experiments with my diet and achieved a breakthrough when, 41 days ago, I stopped all my vitamin supplements. The baseline fatigue and brain fog that I have been increasingly struggling with cleared enough for me to tell what foods in my diet were triggering a "glutening" reaction. 

I even became well enough to increase my workload and start working on plans to ramp up a business that I had not been able to work on for some time.

But yesterday I consumed three food bars (all the same flavor, same manufacturer) that only has 2 ingredients, and today I'm feeling significant "glutening" effects. I am having significant brain fog and fatigue that are drastically impacting my productivity. I feel like my IQ and reading comprehension, as well as my physical stamina, have gone way down. 

This is very angering and is not acceptable. All it takes is a food bar to take me down. I was clawing myself back out of the hole I was in, and this one food bar knocked me back. 

And this food bar has the label "gluten free."

[GardeningForHealth]

These are my own experiences and may be quite different and extreme from what is typical for those with Celiac Disease. I have been doing "mini-eliminations" and "mini-reintroductions" in my diet over the past 41 days, and I have found a lot of foods trigger a glutening reaction. I have no idea if these foods contain gluten; it could be something else that is triggering me. My reaction list contains foods that I ate once, then waited a week, ate again, and had a reaction both times:

A gluten-free baking flour

A gluten-free cassava flour

Bottled powdered spices as follows: cumin, curry powder, turmeric, cinnamon, ginger 

A GFCO-certified bag of corn chips

A GFCO-certified box of cake mix

A GFCO-certified brand of white rice

A bag of frozen mixed vegetables containing corn, peas, green beans, and one other veggie that I cannot recall at the moment

Food bars that were labeled gluten-free and only contained 2 ingredients each

A grocery store green tea

Another brand of grocery store green tea

A brand of sausage that is labeled gluten-free

Ground beef from a grocery store

 

Meanwhile I've never reacted to foods in their whole forms such as chicken breast or chicken leg, pork chop, fish fillet etc that I cook at home, nor have I reacted to veggies that I buy in whole form, chop up and cook at home. Seeing a pattern here.

[knitty kitty]

@GardeningForHealth,

You've stumbled upon the Autoimmune Protocol Diet.  The AIP diet cuts out ALL processed foods (gluten free flours, gluten free premade processed foods, grains and rice, chips, nuts, etc.).

The AIP diet includes meat and vegetables and some fruits.  You can use fresh veggies or frozen ones without sauces or seasonings.  Do not eat processed meats like luncheon meats and sausages.  Poultry is often injected with seasonings so be careful there.  

The AIP diet, just meat and veggies, allows your digestive system the opportunity to heal.  Removing difficult to digest foods (processed foods and grains, nuts) and high histamine foods is beneficial.  Removing Nightshades (tomatoes, potatoes, peppers and eggplant) which promote permeable gut (leaky gut syndrome) is important to healing.  

I'm a big fan of the Autoimmune Protocol Diet.  So glad you are trying it now!

[GardeningForHealth]

Along my journey to reclaim my health, I have been exposed to various statements in books, publications, and doctor interviews about health that ended up not being true for me, and that ended up hurting me, such as:

1. If you have Celiac, all you need to do is stop eating gluten, and your gut will heal. (Years later, studies came out showing that this was not true, or not true to the extent that it was claimed). In other words, just because you stop eating gluten does not mean your gut will heal. But because I believed these statements, I didn't know what to do and was confused when, a few years after my positive blood test and being gluten-free and doing well, I began to experience a decline in my health that seemed to be linked to food sensitivities and intolerances, I had no idea what was going on and didn't know what to do. I assumed that I was just a sickly person for unknown and mysterious reasons. That's when I did a ton of digging and found out about the AIP diet.

2. I have the books "The Paleo Approach" and "Paleo Principles" by Dr. Sarah Ballantyne (and others like these) and I'm quite familiar with the AIP diet. The AIP diet claims that if you do the AIP diet, your gut will heal. Hmm, is this really true? Has this been proven by studies in which study participants underwent a lactulose/mannitol test before doing AIP and then again after 6 months to 12 months of doing AIP? Or, does the intestine remain in the same state of permeability the entire time on AIP? Or, perhaps there is healing, but as soon as you re-introduce any of the foods on the "no" list, the intestines begin to become more permeable again.

The AIP diet claims that you can first remove all the triggering foods, then later, once the gut has healed, you can safely re-add at least some of these foods back. Looking back, I now see that this was not my experience when I did AIP some years ago. Back then, after doing AIP for months, I assumed that my gut had healed and that I could re-add some foods back into my diet.

However, when I re-added the foods back, my health declined. Because the AIP diet claimed that my intestines should have healed and I should be able to re-add at least some foods safely back into my diet, I assumed that the foods I re-added were safe, I assumed my intestines had healed, and I assumed that my health declining was due to some other mysterious causes not related to the foods I was eating, and over time I came to accept that, for unknown reasons, I was a just sickly person.

3. Safe Upper Limits for Vitamins and Minerals: The scientific advice for ~20 years was that 400 mcg per day of selenium is safe. This ended up being false for me. For two years I took a 200 mcg / day selenium supplement, while getting between 100 mcg to 200 mcg per day in my diet, rarely ever exceeding a total of 400 mcg / day." I assumed "I am not getting too much selenium because I'm rarely ever going over the safe 400 mcg / day limit; therefore, I must simply be a weak and sickly person." Then a study comes out in 2023 saying that anything over 225 mcg / day is unsafe. So, apparently, for about 2 years, I guess I have been poisoning myself by taking a 200 mcg / day selenium supplement? I am still processing that one.

 

I trusted in all these statements for years, and in doing so, I was unable to uncover simple truths about my own individual health, and I lost years of health and productivity.

The goalposts and the medical advice keep changing.

After 10 years of this rollercoaster ride, I no longer believe anything. I am at a point of questioning everything. 

[RMJ]

1 hour ago, GardeningForHealth said:

I trusted in all these statements for years, and in doing so, I was unable to uncover simple truths about my own individual health, and I lost years of health and productivity.

The goalposts and the medical advice keep changing.

After 10 years of this rollercoaster ride, I no longer believe anything. I am at a point of questioning everything. 

When I was in college I majored in nutrition science but did not want to be a dietician.  I didn’t want to advise people on how to eat and find out the science changed and I’d been giving them bad advice!

[knitty kitty]

Me, too, @RMJ!  I was more curious as to what those vitamins were doing inside our bodies.  We cannot live without them, but why?  So I switched to microbiology and learned about how vitamins are used to make energy and enzymes that allow our bodies to function properly.  

While undiagnosed, Celiac Disease causes malabsorption by damaging the villi that absorb nutrients.  The Gluten Free diet can be low in essential nutrients, which increases the level of malnutrition.  

The Autoimmune Protocol Diet has been shown to promote intestinal healing.  So adopting the AIP diet can reduce inflammation, but those nutritional deficiencies that developed prior to diagnosis and even after diagnosis need to be addressed.  

Damaged intestines will heal better and faster if there is sufficient nutrients available.  

References:

Efficacy of the Autoimmune Protocol Diet for Inflammatory Bowel Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/mid/NIHMS889275/

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

Nutritional Status and Metabolism in Celiac Disease: Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10419423/

Prevalence and Impact of Malnutrition in Hospitalizations Among Celiac Diseases: A Nationwide Analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10524785/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Nutritional Considerations in Celiac Disease and Non-Celiac Gluten/Wheat Sensitivity

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10058476/

The Gluten-Free Diet for Celiac Disease: Critical Insights to Better Understand Clinical Outcomes

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10537989/

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Gluten-free diet intervention reduces thiamine intake in two weeks, increases glycaemic response and decreases body weight in four weeks...

https://pubmed.ncbi.nlm.nih.gov/34583628/

[GardeningForHealth]

At this point, knitty kitty, I question everything, all the medical advice, about nutrition and what works and what doesn't. I tried benfotiamine, and it made me worse.

Based upon my own experiences in which large amounts of vitamin supplements caused me harm, (Vitamin B6 at 12x to 25x of RDA which led to ataxia, some of which is permanent, and now selenium which apparently 400 mcg / day is an overdose and led to loss of health and productivity), I do not believe in dosing large amounts of vitamins anymore. I see them as dangerous. I find it frightening to see recommendations being made on this forum over and over again to begin large doses of vitamins, without first doing a blood test to check for vitamin deficiencies.

Recommendations like these should be grounded in objectivity and testing. 

[knitty kitty]

@GardeningForHealth,

The essential vitamins need to be taken all together.  There's a balance.  Just taking one vitamin or mineral can throw that balance out of whack.  

Blood tests for serum vitamin levels are unreliable.  You can have vitamin deficiency symptoms before a deficiency is detected in the bloodstream.  

The proper way to treat some vitamin deficiencies is to administer high doses in conjunction with appropriate amounts of the rest of the essential nutrients.  

Unfortunately, many doctors are not required to take sufficient nutritional education.  Many don't recognize nutritional deficiency symptoms.  Nevertheless, everyone should discuss supplementation with their doctor and nutritionist.

Edited September 1 by knitty kitty
Typo correction

[Wheatwacked]

Must not have seen this:

Taking vitamin B6 in doses of 100 mg daily or less is generally considered to be safe. Vitamin B6 is possibly safe when taken in doses of 101-200 mg daily. In some people, vitamin B6 might cause nausea, stomach pain, loss of appetite, headache, and other side effects.

 

I think this is what we've been saying.  Avoid processed food.

On 8/30/2024 at 12:00 PM, GardeningForHealth said:

Meanwhile I've never reacted to foods in their whole forms such as chicken breast or chicken leg, pork chop, fish fillet etc that I cook at home, nor have I reacted to veggies that I buy in whole form, chop up and cook at home. Seeing a pattern here.

At the same time there are certain things we've been told to avoid for a "healthy life" that have had unrecognized negative results to our health.

1. Avoid sun for fear of skin cancer.  Result: 50 million cases of autoimmune disease vs. 1 million skin cancer.
2. Avoid iodine:  Result iodine intake in the US is half what it was in 1970 and thyroxine prescription increased.  In the US, 1 in 8 women will be diagnosed with breast cancer in their lifetime, while in Japan, it's 1 in 38.
3. Avoid/limit eggs, and red meat, fat.  Choline is an essential nutrient that helps your brain, liver, and cells. It also helps your body use fats, control your muscles, stimulate your memory, and keep your mood in check.   Result: In 1970, 15% of adults in the United States were obese. By 2016, that number had increased to almost 40%. The average BMI increased by more than 16% from 1971 to 2020, reaching 29.8. The severe obesity rate tripled, from 1% to 4%, during this time period. 

[Wheatwacked]

One of the most commonly reported side effects of benfotiamine is gastrointestinal discomfort. This can manifest as nausea, bloating, and stomach pain. In some individuals, these symptoms may be accompanied by diarrhea or constipation.

Benfotiamine is a synthetic derivative of thiamine to improve the bioavailability of thiamine, which is fat-soluble.  If you are still having fat digestion issues with fat, think Choline deficiency not enough eggs and meat, it may not be absorbed.  

I take 250 of Thiamine 1-3 times a day for foot cramps specifically.

I tracked my nutrient intake for almost two years using the Dept of Agriculture FoodData Central.  Once I had it right, using food intake and supplements I started low carb.  My glucose level spiked to 180 mg/dl and any meds the doctor gave me was ineffective or like metformin turned me to zombie.  Something to do with all the belly fat being released raising glucogen.  In contrast, I now get most of my energy carbs from sugar and am feeling good and getting stronger. (18 years sedentary from no energy).  After only three weeks I was tested and while glucose was still high, my triglycerides and cholesterol dropped 100 points and HDL finally came up to normal. (whole family has famialiar hypercholesterolemia).  I am the first male to get diabetes. Every one over 50 except me is on statins and CoQ10. 

Sample of the spreadsheet I created    http://nutrientlog.doodlesnotes.net/ 

The other advice I will give you is choose foods high in omega 3 and low in omega 6.  The typical western diet is 14:1 (omega 6:1), optimum is 4:1 or lower.  Sweet potato is 14:1 while white potato is 3:1. 

Almonds have a 1967:1 ratio. Is almond milk good for you or could it be causing inflammation? 

Caldwell et al. reported a significant decrease in mUIC [median urinary iodine concentration] among the US population aged 6 years and over, from 164 µg/L in 2007–2008, to 144 µg/L in 2009–2010. Iodine Status and Consumption of Key Iodine Sources in the U.S. Population with Special Attention to Reproductive Age Women

 

According to emedicine.medscape.org, the median urinary iodine level in the United States from 1971–1974 was 320 mcg/L, which indicates adequate dietary iodine intake. However, by 1988–1994, the median urinary iodine level had dropped to 145 mcg/L.   

That is when they stopped using iodine as a dough conditioner in the US.  

So, yeah, question everything.

Vitamins are the tools we need to process food.  If you have deficiencies there are consequenses.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3500 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine. United States RDA is150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

[oliver2023]

On 4/12/2024 at 3:53 PM, GardeningForHealth said:

Yes, I am still consuming dairy products. I eat butter and cheese. I drink milk sometimes. I rarely ever seem to have a reaction to dairy products, but perhaps its time to drop those too. I did stop dairy in 2018 when I was doing AIP and felt better.

AIP / elimination diet does not permanently heal our guts. I did AIP in 2018 (most of that entire year) and it did temporarily provide relief, but when I came off of it, the problems returned and continued to worsen over time. 

So you resumed dairy consumption? I recently developed multiple food sensitivities. Before this I was going gluten free for a while and i thought my gut was healed, so i started to consume lactose free dairy and I felt fine with it. Then about three months later, the new food sensitivities occurred. Now, I’m not sure what exact reason triggered the reaction but I stopped eating dairy as it triggers the same reactions when eat gluten for some celiac patients, and i went AIP diet. My symptoms stopped. I’m still in AIP diet monitoring the final results. But I will never eat dairy again.

[GardeningForHealth]

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.

[GardeningForHealth]

7 hours ago, oliver2023 said:

So you resumed dairy consumption? I recently developed multiple food sensitivities. Before this I was going gluten free for a while and i thought my gut was healed, so i started to consume lactose free dairy and I felt fine with it. Then about three months later, the new food sensitivities occurred. Now, I’m not sure what exact reason triggered the reaction but I stopped eating dairy as it triggers the same reactions when eat gluten for some celiac patients, and i went AIP diet. My symptoms stopped. I’m still in AIP diet monitoring the final results. But I will never eat dairy again.

Well that was years ago but yes back then I did resume dairy consumption. However, a few days ago I've stopped dairy again and I may never go back to it. How long have you been doing AIP now?

[oliver2023]

21 minutes ago, GardeningForHealth said:

Well that was years ago but yes back then I did resume dairy consumption. However, a few days ago I've stopped dairy again and I may never go back to it. How long have you been doing AIP now?

Just recent weeks after i suddenly started having water like diarrhea. I’m also a bit worried about the development as  I’m trying to reintroduce foods in my diet now because it’s not clear what caused my symptoms, so I always suspended thinking about do i find the culprit? Will the symptoms reoccur?

[GardeningForHealth]

Well looking back I think I made a lot of assumptions with AIP (due to the AIP diet's claims) that I shouldn't have, such as "my gut has healed," "the foods that I re-introduced are not hurting me, its something else," etc.

I think we cannot assume our intestines have healed or that any particular food "should" be safe, and instead, upon re-introducing a food, if we get symptoms from that food, we have to assume its that food that caused it, no matter how "safe" that food "should" be.

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

 

[trents]

@GardeningForHealth, when is the last time you had a follow-up endoscopy or even a follow-up antibody panel?

[GardeningForHealth]

15 minutes ago, trents said:

@GardeningForHealth, when is the last time you had a follow-up endoscopy or even a follow-up antibody panel?

My blood labs came back a few days ago as follows:

 

Celiac Panel:

Immunoglobulin A: 161 (ref: 87-352)

Deamidated Gliadin Abs, IgA: 3 (ref: 0-19 neg, 20-30 weak positive, >30 positive)

tTG IGA: <2 (ref: 0-3 neg, 4-10 weak positive, >10 positive)

Diabetes screen: 

A1C: 5.4 and glucose in normal range

Vitamins and minerals:

Iron, ferritin, iron binding capacities, magnesium: all within normal range

Other Autoimmune / Thyroid:

ANA: Positive

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

TPO antibody: 18 (ref: 0-34)

TSH: 2.25 (ref: 0.450 - 4.5)

T3, T4 in normal range

Reverse T3: 24.0 (ref: 9.2 - 24.1)

Rheumatoid factor: <10 (ref: <14)

Hormones mostly normal. Cholesterol a little bit high.

 

To date I've never had an endoscopy.