10 years later, my celiac is progressing

[GardeningForHealth]

Progressing: a disease that is getting worse over time, not better.

10 years ago, I had a Celiac panel done. The results:

• Deamidated Gliadin ABs, IgA: 21 (ref: 0-19)
• ttG IgA: 28 (ref: 0-3)
• Immunoglobulin A, serum: 137 (ref: 91-414)

I did not have an intestinal endoscopy; I never did that, so I do not know what the condition of my villi were then, and I do not know their condition now. However, I immediately went on a gluten-free diet and never cheated. I was accidentally glutened in restaurants a few times, which caused me throw up, and I felt sick for up to 2 weeks each time.

Initially, when I went gluten-free, I regained a significant amount of mental clarity and physical energy and stamina. I opened a successful business. But over the past 5 years, I have progressively developed worsening food intolerances that have caused fatigue, brain fog, and a lowering of functioning/quality of life, in this order:

• oats          (discontinued a long time ago)
• millet, sorghum, teff          (discontinued a few days ago)
• chocolate             (discontinued 6 months ago)
• rice             (discontinued a few days ago)

I am starting to feel better. But this means that I have now been forced into the AIP diet. I am scared. I ask myself: how long will it be until I can't eat anything, even things on AIP? It's only a matter of time. The clock is ticking. Am I going to gradually need to remove more and more foods? 

I am calling this "Celiac Disease progression." Why? Because removing gluten did not heal my gut; apparently, I still have leaky gut 10 years later. Why did removing gluten not heal my gut? I thought it was supposed to.

And why are we testing food sensitivities with IgE and IgG, when Celiac itself, an autoimmune reaction, is tested via IgA? I believe these other food sensitivities are also happening via an autoimmune process, not an allergy process. Shouldn't they be tested via IgA tests?

Perhaps Celiac Disease is but one form of an underlying, deeper disease process that can have many expressions.

I have read conflicting things about "cross-reactivity" but I firmly believe in it; otherwise, why do we develop reactions (that have the same symptoms as gluten, just maybe of lesser intensity) to these other foods?

I look forward to hearing from the forum what everyone's experiences are, what all this could mean, and what should be done about it. Thank you.

[GardeningForHealth]

I forgot to mention that I am very, very careful with my diet. I cook all my meals at home and have been for 10 years. I screen my ingredients and only buy from trusted sources that I have inquired with already. I screen my supplements for gluten. I never cheat. And subsequent Celiac Panel tests have always come back with numbers like this:

9 years ago: gliadin abs: 7, ttG 3

8 years ago: gliadin abs: 6, ttG 3

7 years ago: gliadin abs: 5, ttG <2

6 years ago: gliadin abs: 3, ttG <2

3 years ago: gliadin abs: 4, ttG <2

[trents]

Are you still consuming dairy? Along with oats, dairy is the most likely food to be cross reactive.

[Scott Adams]

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

[knitty kitty]

Welcome to the forum, @GardeningForHealth!

I would call what you describe as "Malnutrition Progression" because the gluten free diet can be inadequate in vitamins and minerals.

Additional food sensitivities can be a result of high histamine levels and inadequate vitamins needed to clear histamine.  

Following a low histamine AIP diet will help the intestines heal.  Nutritional supplementation helps boost your ability to absorb essential nutrients so that the body can function properly and heal.

What supplements are you taking? How often?  Doses?

[GardeningForHealth]

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. 

[GardeningForHealth]

10 years ago, when I did the Celiac panel, I also did other tests that showed the following results (this is before gluten-free diet):

• Antithyroglobulin antibody: 177 (ref: 0-0.9)
• Thyroid peroxidase antibody: 10 (ref: 0-34)
• Reverse T3: 34 (ref: 9.2-24.1)
• A1C normal
• Vitamin D, magnesium, iron normal

T3, T4, and TSH were all within normal range. Therefore I could not have been diagnosed as having hashimoto's thyroiditis. Also, as of a few months ago, my T3, T4 and TSH are all within normal range, therefore I cannot be clinically diagnosed as having a thyroid condition. In the past 10 years, my TSH, T3 and T4 have always been within "normal" range, but my thyroglobulin antibodies have always been high, thus indicating an autoimmune process occurring within my thyroid, and we all know that we cannot have an autoimmune condition without having a leaky gut.

Thyroglobulin antibodies dropped from 177 10 years ago down to around 40-90 around the time I was doing AIP, but in my most recent test in 2021, it's higher than ever before, at 240. 

Thus, my ongoing thyroid antibodies prove that I have a leaky gut 10 years after going gluten-free, and that in my case, a strict gluten-free diet for 10 years has not stopped my leaky gut.

I have ruled out diabetes via A1C tests over the years; my most recent A1C a few months ago showed no pre-diabetes or diabetes.

[knitty kitty]

The AIP diet is meant to reduce inflammation and allow healing.  If you go back to eating inflammatory foods, the intestines are going to get inflamed again.

Lactose intolerance and a reaction to Casein, a protein in dairy that resembles the protein gluten, can cause continuing inflammation.

Are you eating a nutrient dense diet?  Do you eat gluten free processed foods? 

Do you take vitamins and minerals?  Essential vitamins and minerals can become low in Celiac Disease due to malabsorption and a diet full of empty calories and high fat from gluten free processed foods.

[GardeningForHealth]

I mostly eat healthy. My diet has varied over the past 10 years but mostly consisted of meals I cooked at home made from scratch. Ingredients I used over the years include (not in order): non-wheat grains such as teff, sorghum, millet, and eggs, butter, cheese, some milk, meat (poultry, red meat, but very little processed meat), gluten-free baked bread (mostly Canyon Bakehouse brand), vegetables, fruits, nuts, legumes, peanuts, chocolate (not in the past 6 months).

However, the mistakes I made in my diet are that I consumed too much sugar and carbohydrates from gluten-free baked goods that I baked myself at home such as gluten-free dessert items, and also I ate pretty much the same exact meals over and over, so a great lack of diversity in what I ate. I got lazy. I think this messed up my microbiome. The meals I ate were mostly healthy though. I always made sure to eat vegetables and fruits on a daily basis. 

I have checked for nutrient deficiencies over the years and I am sometimes low in Vitamin D. I started supplementing it after that.

What concerns me is the progressive nature of the food intolerances, which indicates the gut is not healing and has been leaking all along. 

[GardeningForHealth]

As a side note, it seems that medical science has evolved in the past 5-6 years regarding Celiac Disease, and I am now catching up. It seems that anything that disrupts the microbiome sufficiently enough can--in genetically susceptible individuals--lead to Celiac Disease. I have been reading now that antibiotics, excessive simple carbohydrates such as refined sugars and starches, the manner of birth such as C-section vs vaginal delivery, the diversity of one's diet, the presence of certain bacteria or viruses, can all contribute to microbiome dysbiosis, which can lead to Celiac. This is fascinating research.

[Scott Adams]

Legumes can be a source of wheat contamination, but I assume that you use versions labelled "gluten-free."

[Celiac16]

This may not be a welcome comment but I found cutting out sugars altogether helped me a lot. Ketosis is extremely therapeutic and ant inflammatory. I tried the specific carbohydrate diet and GAPS and found under 20 g carbs from green veges with high fat and moderate protein is the best diet for me. 
i was strict gluten and diary free for years without much health improvements and eventually eliminated grains and then tried the aforementioned diets until falling into basically Atkins. I have been chronically underweight and now i am finally putting on muscle and feeling so much stronger (I don’t limit my calories and can eat over 3000 kcals a day if I’m really hungry). I think I was too focused on my celiac diagnosis when sugars/carbs were overall causing a lot of harm.

[Scott Adams]

Good point, as I don't believe that sugar is good for anyone, and I avoid it. Eating too much can lead to imbalances in the gut microbiome which can lead to IBS-like symptoms.

[Celiacmanbill]

I eat mostly rice and garbanzo beans specifically because i can tolerate them with olive oil a ton of lemon juice ginger garlic turmeric black pepper and potassium salt and i mix in 250 grams of frozen broccoli from wholefoods and i feel pretty good eating this way, the best i have ever felt actually i have orgain protein shakes in the morning with ripple milk/ high poly phenol cacao powder and flaxseeds with a few supplements and that works pretty well for me but i am thinking i might have to switch out the protein for another and the milk since i got a birch pollen allergy too and have to avoid a bunch of things pea is one that is possible i react to but mostly eating wholefood plant based and focusing on polyphenols/antioxidants has seemed to help more than anything and avoiding heavily baked foods that turn dark since they seem to make me feel worse its pretty strict but i gotta do what i gotta do maybe you can take something from my experience and find something that works for you i wish you the best

edit: with dairy i forgot to say i notice i would be fine eating it for a while but than it would slowly put me into an inflammed state that would go away just as slowly as it creeped up dairy is pretty messed up for me i completely avoid it

[GardeningForHealth]

On 4/16/2024 at 12:39 PM, Scott Adams said:

Legumes can be a source of wheat contamination, but I assume that you use versions labelled "gluten-free."

Yes, I am very careful with my diet and I screen pretty much everything I eat. I stick with already-screened brands.

[GardeningForHealth]

On 6/4/2024 at 8:37 AM, Celiacmanbill said:

I eat mostly rice and garbanzo beans specifically because i can tolerate them with olive oil a ton of lemon juice ginger garlic turmeric black pepper and potassium salt and i mix in 250 grams of frozen broccoli from wholefoods and i feel pretty good eating this way, the best i have ever felt actually i have orgain protein shakes in the morning with ripple milk/ high poly phenol cacao powder and flaxseeds with a few supplements and that works pretty well for me but i am thinking i might have to switch out the protein for another and the milk since i got a birch pollen allergy too and have to avoid a bunch of things pea is one that is possible i react to but mostly eating wholefood plant based and focusing on polyphenols/antioxidants has seemed to help more than anything and avoiding heavily baked foods that turn dark since they seem to make me feel worse its pretty strict but i gotta do what i gotta do maybe you can take something from my experience and find something that works for you i wish you the best

edit: with dairy i forgot to say i notice i would be fine eating it for a while but than it would slowly put me into an inflammed state that would go away just as slowly as it creeped up dairy is pretty messed up for me i completely avoid it

Well that definitely doesn't sound like fun. I tell you what, after 10 years of having to be careful about foods, and eliminating more and more foods from my diet (which gets really old), while dealing with recurring CFS, I am nearly at my limit and I'm now looking into solutions beyond just gluten-free diet, which in my case is not sufficient.

[GardeningForHealth]

Recent scientific research done by Dr. Alessio Fasano and others seems to point to gut dysbiosis as the cause of Celiac and other autoimmune diseases. The obvious next question would be: what therapies will come out of this research? High intensity probiotics? Microbiota transplant? I am ready.

One thing that I see lacking in all of this research, however, is the problem that I (and many other Celiacs) have: which is, increasing food intolerances over the years, in which consumption of these foods causes the same or similar symptoms to consumption of gluten. Why is no one talking about or studying this? It's not new.

[trents]

6 minutes ago, GardeningForHealth said:

Recent scientific research done by Dr. Alessio Fasano and others seems to point to gut dysbiosis as the cause of Celiac and other autoimmune diseases. The obvious next question would be: what therapies will come out of this research? High intensity probiotics? Microbiota transplant? I am ready.

One thing that I see lacking in all of this research, however, is the problem that I (and many other Celiacs) have: which is, increasing food intolerances over the years, in which consumption of these foods causes the same or similar symptoms to consumption of gluten. Why is no one talking about or studying this? It's not new.

But that raises the question, what causes the gut dysbiosis? Why do some people under the same relative living conditions (similar diets, similar antibiotic treatments) develop dysbiosis and others do not? Is there a genetic component to that? We already know there is a strong genetic component to celiac disease. Does the gut dysbiosis altar the genes or is it caused by faulty genes? It is a chicken or the egg question. 

[GardeningForHealth]

That is a very good question. What came first, the gut dysbiosis, or the epigenetic changes?

I am assuming that its mostly a combination of various environmental factors--antibiotics, viral infection, pre-natal environment, toxins, diet, etc. And I believe that epigenetic changes can accumulate with each generation.

[knitty kitty]

Gut dysbiosis can be caused by consuming a diet high in carbohydrates.  Carbohydrate fermenting bacteria can push out more beneficial bacteria leading to SIBO, leaky gut and nutritional deficiencies in the B vitamins, especially in Thiamine.  Thiamine is the B vitamin that we can run out of very quickly.  Thiamine is needed to keep intestinal bacteria from overgrowth.  In Thiamine deficiency, mitochondria become dysfunctional and begin to shut down.  There's a thiamine deficiency shut down switch on our DNA strand which when triggered turns on the switch for autoimmune diseases stored in our DNA.  Fascinating article is in my blog. 

Thiamine deficiency has a connection to thyroid problems.  Thiamine has been shown to improve fatigue in CFS/myalgic encephalomyelitis.

https://pubmed.ncbi.nlm.nih.gov/33210299/

Supplementing with essential nutrients is important because the gluten free diet can be deficient.  

Nutritional inadequacies of the gluten-free diet in both recently-diagnosed and long-term patients with coeliac disease

https://pubmed.ncbi.nlm.nih.gov/23198728/

Thiamine deficiency: Hiding in Plain Sight

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

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

Edited June 5 by knitty kitty
Add link

[Jeff Platt]

I was diagnosed at age 49 with a blood test, became completely faithful at a gluten free diet and am even sensitive to cross contamination and pots and pans that have cooked gluten before. I have been glutened a hand full of times this past decade but am faithfully observant. I am currently at a gastroenterologist and functional MD trying to find out why I am still having issues even though I’m off so many other foods, dairy, some fruits, and some  brands of rice. But I seem to progressively be getting a little worse or maybe just returning to the same symptoms I had originally, though no where near as bad as I was before stopping gluten. It feels like I take two steps forward and then one step backwards every time I stop another food. I don’t know where this rabbit hole is leading me but am hopeful both can find out why. 

[knitty kitty]

I found this article very interesting.  Section 4.2  discusses how gluten affects intestinal permeability.

Food, gut barrier dysfunction, and related diseases: A new target for future individualized disease prevention and management

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10084985/

[GardeningForHealth]

14 hours ago, knitty kitty said:

I found this article very interesting.  Section 4.2  discusses how gluten affects intestinal permeability.

Food, gut barrier dysfunction, and related diseases: A new target for future individualized disease prevention and management

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10084985/

A linked article to that one, https://pubmed.ncbi.nlm.nih.gov/33984722/ titled "Food antigens exacerbate intestinal damage and inflammation following the disruption of the mucosal barrier" states that collagen is a food antigen. I eat collagen on a regular basis, and collagen is a healthy food that cannot be avoided if you eat a healthy diet. Collagen is found in animal meats, especially meats that are attached to bones, such as chicken legs, whole chicken, bone-in pork chops, etc. 

The title of this article seems to imply that the mucosal barrier is disrupted, and that is what is causing the problem. Ok, so my next question is, how can we fix that? As long as the mucosal barrier is disrupted, apparently we are going to continue to experience problems with different foods and medicines because these foods/medicines are leaking out of the gut and the immune system is finding them.

I see that aspirin and NSAIDs can cause leaky gut. I don't use those and, in my entire life, never used aspirin and only rarely used NSAIDs.

This article discusses a possible treatment, but access to the entire article requires purchasing it, so I was not able to see what the treatment was.

[GardeningForHealth]

16 hours ago, Jeff Platt said:

I was diagnosed at age 49 with a blood test, became completely faithful at a gluten free diet and am even sensitive to cross contamination and pots and pans that have cooked gluten before. I have been glutened a hand full of times this past decade but am faithfully observant. I am currently at a gastroenterologist and functional MD trying to find out why I am still having issues even though I’m off so many other foods, dairy, some fruits, and some  brands of rice. But I seem to progressively be getting a little worse or maybe just returning to the same symptoms I had originally, though no where near as bad as I was before stopping gluten. It feels like I take two steps forward and then one step backwards every time I stop another food. I don’t know where this rabbit hole is leading me but am hopeful both can find out why. 

This sounds quite similar to my situation. 

A hypothesis: perhaps the original gut dysbiosis that caused our celiac disease, does not get repaired over time with the gluten-free diet. Perhaps our guts remain in some state of dysbiosis, and this over time causes increasing sensitivities to food antigens despite the gluten-free diet.

[GardeningForHealth]

17 hours ago, knitty kitty said:

Gut dysbiosis can be caused by consuming a diet high in carbohydrates.  Carbohydrate fermenting bacteria can push out more beneficial bacteria leading to SIBO, leaky gut and nutritional deficiencies in the B vitamins, especially in Thiamine.  Thiamine is the B vitamin that we can run out of very quickly.  Thiamine is needed to keep intestinal bacteria from overgrowth.  In Thiamine deficiency, mitochondria become dysfunctional and begin to shut down.  There's a thiamine deficiency shut down switch on our DNA strand which when triggered turns on the switch for autoimmune diseases stored in our DNA.  Fascinating article is in my blog. 

Thiamine deficiency has a connection to thyroid problems.  Thiamine has been shown to improve fatigue in CFS/myalgic encephalomyelitis.

https://pubmed.ncbi.nlm.nih.gov/33210299/

Supplementing with essential nutrients is important because the gluten free diet can be deficient.  

Nutritional inadequacies of the gluten-free diet in both recently-diagnosed and long-term patients with coeliac disease

https://pubmed.ncbi.nlm.nih.gov/23198728/

Thiamine deficiency: Hiding in Plain Sight

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

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

I read this post and your blog post about Thiamine last night, and that was fascinating. I will be taking a blood test soon to see if I am deficient.