4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

[lehum]

Dear Community,

I hope this won't get too long, but I'd like to share a bit of my Celiac story to see if anyone can relate or has any input from personal experience, because I have been struggling for awhile now. 

I was diagnosed at 28 with Celiac. I had been having gut problems for years but it took me awhile to take the step to get medical support. At the point of my diagnosis, my antibodies were at 1,118. The doctor said that I must have had Celiac since childhood. 

Upon starting the gluten-free diet, it seemed, at least at first, like my problems exacerbated instead of getting better. Throughout the course of the last 4.5 years, I have struggled immensely with food. In addition to the transition to the gluten-free diet, I began having numerous other problems, including dairy, histamine, and potentially more: I am not so sure. I have struggled with fatigue, headaches, nausea, gut problems, extreme brain fog, and more.
After about two years of eating gluten-free, I got a follow up endocsopy. My antibodies were still a bit higher than they should have been, but my villi had healed. So, the structural damage had gotten better, but my symptoms continued.

To this day, I eat strictly gluten-free (of course), dairy free, and low histamine. Bloodwork has shown that my DAO and histamine liberator levels are actually normal which should normally indicate not having a histamine intolerance, but my body reactions to histamine when I eat it, and even eating low histamine I feel a constantly feeling of allergy/inflammation, even though I don't have seasonal allergies.
I mostly eat rice products, low histamine nuts, potatoes and sweet potatoes, low histamine fruits and vegetables, eggs, chicken, and simple spices and oils. 

I have struggled with brain fog, fatigue, rosacea, and headaches. The headaches have improved some. The doctor also found some deficiencies like Iron, Omega 3, and coenzyme Q10, so I am taking supplements fot those now. 
Another doctor found mold toxicity and I have been trying to take measures to detoxify as well. 
The last time my antibodies were checked, they were at 8, though I eat very strictly gluten-free. 

Stool tests have shown a slight gut imbalance, but they haven't shown anything extremely drastic. 

I feel like I react to products, even certified gluten-free ones, with symptoms quite often. 
My doctor suggested that I switch to grain-free earlier this week with the exception of rice and quinoa. I replaced my gluten-free oats with gluten-free quinoa flakes, and I reacted horribly, as if there were gluten in the product.
The product comes from a very reputable brand known for their strict procedures and producing gluten-free products in a separate building, with consequent testing before sending out products.

Why, then, I wonder am I reacting this way? I know it was the flakes because they're the only new thing I ate. After three days of eating them, I had several itchy bumps on my body, fatigue, diarrhea, gut pain, gas, instant neuropathy in my legs, and all the other things that go along with a glutening for me.

I am curious if I am one of those people who reacts to products that have more than 10 ppm, since the product only guarantees being below 20 or if it is a cross-reaction with grains. I am not sure how to make this determination.

At this point, I am not trying to figure out what the best is for me. Grain-free? Paleo? Just avoid these specific flakes? I think it is encouraging that my villi look better, but I simply don't FEEL better. 
I have started working with a nutrionist who suggested that I do grain-free (with the exception of rice) for two weeks and focus on starchy fruits and veggies and after another week try and add back in a few fats like avocado or hemp seeds. 

I follow instagram accounts of people with Celiac claiming how now that they are eating gluten-free they've never felt better, are traveling the entire world, etc. It is so easy to feel isolated and alone, especially when reading that most people feel remarkably better within 6 months to a year. This is not my story, though of course I sometimes wish it were.

I don't need to travel the world, but I do travel a few times a year overseas to visit my family in the US (I live in Europe), and it's tiring.
I would just love to have my energy, health, and life back.

If anyone has any practical ideas or would like to share part of his/her/their story, I would be really grateful and happy to read it.

Wishing everyone well on the Celiac journey,
L 

[Scott Adams]

Thank you so much for sharing your story with such honesty and detail. Please know that you are not alone in this struggle, and your experience, while incredibly challenging, is more common than those "gluten-free miracle" stories on social media would have you believe. It's completely understandable to feel isolated, but your diligence in tracking your symptoms, following up with scopes, and working with professionals is truly commendable. It's encouraging that your villi have healed, which proves you are successfully avoiding the large-scale damage of gluten; however, it's clear your immune system remains in a heightened state of alert. Your intense reaction to the quinoa flakes is a classic sign of this hypersensitivity. Given the reputable brand, it's highly unlikely to be gluten cross-contact. It's much more probable that you are reacting to the quinoa itself—perhaps due to a separate intolerance, its saponin content (which can irritate some sensitive guts), or cross-reactivity, where your immune system mistakes similar protein structures for gluten. Your nutritionist's plan for a simplified, grain-free (except rice) baseline is an excellent strategy. The goal is to calm your nervous and immune systems down completely before slowly testing individual foods, like avocado or even quinoa in its whole form, to identify the true triggers. Remember, healing from years of damage takes time, and setbacks are part of the journey. Be kind to yourself; you are doing everything right by continuing to investigate and advocate for your health. Your path to feeling better may be more complex, but it is absolutely valid.

[Padgmatic]

I appreciate your struggle. I found out I was celiac at 42 and 19 years later I still make mistakes and learn more about what it means to live a healthy life without gluten. I have to ask: have you done an exhaustive purge of your kitchen? Plastic, wood, non stick cooking items? Until I did this I had issues.

Good luck

[cristiana]

Hello @lehum

Greetings from the UK.  Another struggler here - and I'm a Moderator on this forum, and have been extremely strict about my diet!  My antibodies took years to come down to normal levels.  Very annoying particularly when had friends who seemed to be the miracle turnaround celiacs that one reads about (although, of course, I am happy for them!)

My antibodies didn't descend to normal (under 10 in my local lab) for about 8 years, from memory.  I must admit once that had happened a lot of aches and pains disappeared, but I still have some weird stuff going on like ocular migraines, tingling in my left leg after exercise.  And it doesn't take much to make my stomach upset - too much rich food, antibiotics, overdoing the dairy or even too many pure oats.  This all leads to reflux occasionally, and gastritis like pain.  And during the various lockdowns I developed adult onset eczema - I think I found that eating too many almonds might have been the cause of that.

One thing you may need to check - do you use a dishwasher?  Could be a coincidence but it wasn't until we changed from our old one, which on closer inspection left a residue on plates (I share a house with gluten eaters), to a new one which had an extra clean water cycle to rinse plates at the beginning of the wash,  that the numbers really began to fall.  Also buying a new oven and making the lower oven exclusively gluten free,  may have helped.

Whatever you do, be very careful eating out - it's a big reason for cross contamination amongst otherwise diet compliant coeliacs.   I am thinking of cutting back again, as my stomach hasn't been quite right these past few months and I've been eating out a lot. 

I'm currently awaiting my annual TTG test result to see if it is gluten that is causing this.  Incidentally, what are your TTG levels now?

Cristiana

[lehum]

On 9/23/2025 at 10:56 PM, Scott Adams said:

Thank you so much for sharing your story with such honesty and detail. Please know that you are not alone in this struggle, and your experience, while incredibly challenging, is more common than those "gluten-free miracle" stories on social media would have you believe. It's completely understandable to feel isolated, but your diligence in tracking your symptoms, following up with scopes, and working with professionals is truly commendable. It's encouraging that your villi have healed, which proves you are successfully avoiding the large-scale damage of gluten; however, it's clear your immune system remains in a heightened state of alert. Your intense reaction to the quinoa flakes is a classic sign of this hypersensitivity. Given the reputable brand, it's highly unlikely to be gluten cross-contact. It's much more probable that you are reacting to the quinoa itself—perhaps due to a separate intolerance, its saponin content (which can irritate some sensitive guts), or cross-reactivity, where your immune system mistakes similar protein structures for gluten. Your nutritionist's plan for a simplified, grain-free (except rice) baseline is an excellent strategy. The goal is to calm your nervous and immune systems down completely before slowly testing individual foods, like avocado or even quinoa in its whole form, to identify the true triggers. Remember, healing from years of damage takes time, and setbacks are part of the journey. Be kind to yourself; you are doing everything right by continuing to investigate and advocate for your health. Your path to feeling better may be more complex, but it is absolutely valid.

Hello Scott,

Thank you for your incredibly thoughtful and kind response to my post. 
It's a great reminder that things are often more than what meets the eye and that social media often isn't an accurate representation of reality. 
Reading your response reminds me that I have been very diligent in my healing and in trying to find answers. I suppose some things take a lot of time, patience, a multi-factor approach, and the right combination of factors. 

My nutritionist wants me to try avocado in several days because it will have been a week after the whole quinoa-flake-debacle. The idea seems to be waiting until my system has calmed down; problem is, my system isn't calm even when eating the simple foods that I am. 
I wonder sometimes if it makes sense to add new things when I won't really be able to tell if I am reacting to the foods or simply continuing to react to what feels like life/my surroundings/the situation, but if I keep waiting, I could be waiting forever. I have also heard that sometimes, the more foods you cut out and the longer you don't eat them, the more things the body tends to become adverse to. This feels like a vicious cycle sometimes.
I think the nutritionist is very competent and has my best interests at heart, so I should probably just try it.
If you (or anyone else) have any anecdotal comments about this, I would be happy to hear them too.
 

Thank you, again, for your kind and thoughtful response. It did me a lot of good to read it and to remember that this is not all my fault and I am not alone in my struggles. Very grateful for this online community! Thank you deeply for your work here! 

[lehum]

20 hours ago, Padgmatic said:

I appreciate your struggle. I found out I was celiac at 42 and 19 years later I still make mistakes and learn more about what it means to live a healthy life without gluten. I have to ask: have you done an exhaustive purge of your kitchen? Plastic, wood, non stick cooking items? Until I did this I had issues.

Good luck

Hi there, thank you very much for sharing your story. It is a condition that requires our effort, learning, and and attention for a lifetime: always new ways to grow and learn, like you said. And looking at it as a way to learn is a beautiful way of thinking about things; thank you.

I have done so. I lived alone at my point of diagnosis and still do; when I found out, I got rid of and replaced everything. 

[lehum]

17 hours ago, cristiana said:

Hello @lehum

Greetings from the UK.  Another struggler here - and I'm a Moderator on this forum, and have been extremely strict about my diet!  My antibodies took years to come down to normal levels.  Very annoying particularly when had friends who seemed to be the miracle turnaround celiacs that one reads about (although, of course, I am happy for them!)

My antibodies didn't descend to normal (under 10 in my local lab) for about 8 years, from memory.  I must admit once that had happened a lot of aches and pains disappeared, but I still have some weird stuff going on like ocular migraines, tingling in my left leg after exercise.  And it doesn't take much to make my stomach upset - too much rich food, antibiotics, overdoing the dairy or even too many pure oats.  This all leads to reflux occasionally, and gastritis like pain.  And during the various lockdowns I developed adult onset eczema - I think I found that eating too many almonds might have been the cause of that.

One thing you may need to check - do you use a dishwasher?  Could be a coincidence but it wasn't until we changed from our old one, which on closer inspection left a residue on plates (I share a house with gluten eaters), to a new one which had an extra clean water cycle to rinse plates at the beginning of the wash,  that the numbers really began to fall.  Also buying a new oven and making the lower oven exclusively gluten free,  may have helped.

Whatever you do, be very careful eating out - it's a big reason for cross contamination amongst otherwise diet compliant coeliacs.   I am thinking of cutting back again, as my stomach hasn't been quite right these past few months and I've been eating out a lot. 

I'm currently awaiting my annual TTG test result to see if it is gluten that is causing this.  Incidentally, what are your TTG levels now?

Cristiana

Hi Christina,

Thanks so much for taking time to answer in detail and share your story, too. It's a good reminder that we all walk different paths -- and that none of them are right or wrong. 

It seems like, with time, you've come to be able to identify clearly what your triggers are. I am hoping for this clarity for myself with more time. I am sure it just takes time and lots of experiences.

I am 4.5 years in. When my doctor checked my antibodies earlier this year, they were at 8, which was clearly a pretty incredible progress from the 1,118 where they were 4.5 years ago! Because I am working with a different doctor than the one who diagnosed me, he hasn't seen this progress for comparison and just told me I need to be more careful. That felt frustrating.

I do not have a dishwasher and I don't share the house with gluten eaters, but that is a great tip for the future, should I live in a place with a dishwasher again! When I moved into my apartment, the oven was already here. Although I don't use the convection setting, cleaned it thoroughly after moving in, and do not share it with gluten eaters, perhaps it would be worth replacing it anyway. It is getting really old as it is...  

Thank you again for your response and wishing a lovely Thursday,
L

[knitty kitty]

@lehum,

I found great improvement by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne, a Celiac herself designed it; her book, the Paleo Approach, is very helpful!)

Following the low histamine AIP diet, I cut out all nuts, all dairy, all grains and rice, all processed gluten free foods, Eggs, and all nightshades (potatoes, tomatoes, eggplant, and peppers because they contain glycoalkaloids that promote intestinal permeability).   

A diet high in carbohydrates can encourage SIBO and Candida overgrowth.  Candida can often be confused for mold toxicity.  Candida and SIBO can disrupt your absorption of nutrients from your food, especially B vitamins.  Thiamine Vitamin B 1 influences the microbiome.  Thiamine keeps bad bacteria and Candida in check.  Cutting out carbohydrates, following the AIP diet, starves out the bad carbohydrate-loving bacteria and Candida.  Supplementing with the eight essential B vitamins and Vitamin C while you heal will help immensely.  Benfotiamine, a form of thiamine, has been shown to promote intestinal healing (no more leaky gut!).  Thiamine also helps overactive mast cells from releasing histamine at the least provocation (no more Mast Cell Activation Syndrome!).

Blood tests for deficiencies in B vitamins are notoriously inaccurate.  The best way to see if you are low in any of the B's is to take them and look for health improvement.  Since the B vitamins are water soluble, if you don't need them, they are easily excreted in urine.  

On the AIP diet, healthy Omega Three fats are important.  Our bodies run better when fueled with healthy fats than on carbohydrates.  Cook with olive oil or avocado oil.  Flax seed oil is also great.  

Do get your Vitamin D level checked.  Try to get your Vitamin D up to 80 ng/ml  where it can function as a hormone and regulate the immune system and calm it down.  Yes, Vitamin D tests are fairly accurate.  Since fat malabsorption is common in Celiac, we often don't get enough of the fat soluble vitamins A, D, E, and K.  Vitamin A and Niacin B 3 are integral to skin health.  Magnesium and Calcium should be checked as well.  Magnesium is needed to make life sustaining enzymes with thiamine, and Calcium for strong bones.

I followed this diet, supplemented essential nutrients, and felt better within a few weeks.  It took about three days for my body to adjust to running on fats, during which time I felt fairly poorly, but after that switch, improvement was rapid.  

I still stick fairly close to a Paleo diet, and have added other foods slowly back into my diet once my histamine level came down.  I occasionally have Basmati rice - this rice is the least likely to cause a reaction.  

I know it's a very strict diet, but it has been very much worthwhile.  It's going back to non-inflammatory,  simple to digest foods, as you would feed a sick child, allowing time to heal, then graduating into a wider variety of foods. 

You can do it and be a success story, too!

[lehum]

On 9/26/2025 at 6:41 AM, knitty kitty said:

@lehum,

I found great improvement by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne, a Celiac herself designed it; her book, the Paleo Approach, is very helpful!)

Following the low histamine AIP diet, I cut out all nuts, all dairy, all grains and rice, all processed gluten free foods, Eggs, and all nightshades (potatoes, tomatoes, eggplant, and peppers because they contain glycoalkaloids that promote intestinal permeability).   

A diet high in carbohydrates can encourage SIBO and Candida overgrowth.  Candida can often be confused for mold toxicity.  Candida and SIBO can disrupt your absorption of nutrients from your food, especially B vitamins.  Thiamine Vitamin B 1 influences the microbiome.  Thiamine keeps bad bacteria and Candida in check.  Cutting out carbohydrates, following the AIP diet, starves out the bad carbohydrate-loving bacteria and Candida.  Supplementing with the eight essential B vitamins and Vitamin C while you heal will help immensely.  Benfotiamine, a form of thiamine, has been shown to promote intestinal healing (no more leaky gut!).  Thiamine also helps overactive mast cells from releasing histamine at the least provocation (no more Mast Cell Activation Syndrome!).

Blood tests for deficiencies in B vitamins are notoriously inaccurate.  The best way to see if you are low in any of the B's is to take them and look for health improvement.  Since the B vitamins are water soluble, if you don't need them, they are easily excreted in urine.  

On the AIP diet, healthy Omega Three fats are important.  Our bodies run better when fueled with healthy fats than on carbohydrates.  Cook with olive oil or avocado oil.  Flax seed oil is also great.  

Do get your Vitamin D level checked.  Try to get your Vitamin D up to 80 ng/ml  where it can function as a hormone and regulate the immune system and calm it down.  Yes, Vitamin D tests are fairly accurate.  Since fat malabsorption is common in Celiac, we often don't get enough of the fat soluble vitamins A, D, E, and K.  Vitamin A and Niacin B 3 are integral to skin health.  Magnesium and Calcium should be checked as well.  Magnesium is needed to make life sustaining enzymes with thiamine, and Calcium for strong bones.

I followed this diet, supplemented essential nutrients, and felt better within a few weeks.  It took about three days for my body to adjust to running on fats, during which time I felt fairly poorly, but after that switch, improvement was rapid.  

I still stick fairly close to a Paleo diet, and have added other foods slowly back into my diet once my histamine level came down.  I occasionally have Basmati rice - this rice is the least likely to cause a reaction.  

I know it's a very strict diet, but it has been very much worthwhile.  It's going back to non-inflammatory,  simple to digest foods, as you would feed a sick child, allowing time to heal, then graduating into a wider variety of foods. 

You can do it and be a success story, too!

Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it!

Friendly greetings.

[knitty kitty]

Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel. 

Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).  

Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.  

The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.  

Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.  

Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here.

Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.  

The AIP diet has helped me.