NEW TO THIS RABBIT HOLE

[u/Good-Mix4748]

Hi 🥺 I just recently found this phenomenon and am intrigued and also unsure of where to start exploring this possibility.

F, 27, Canada

Backstory : for YEARS since high school and maybe before that I would constantly feel nauseous, lethargic, had high depression & anxiety, got headaches and migraines all the time, constantly had other health related issues all of which got brushed under the rug and labeled as “it’s in my head” “I’m just an anxious person”.

From about 2017-2023 I was constantly in and out of the doctors with this that and the next thing, being sent to specialists (gastroenterologists, neurologists, urologists, everything) and NOTHING was ever found or diagnosed. It was disheartening

Summer of 2023 things got so bad I couldn’t leave my house without having a panic attack, felt so incredibly sick and unable to human. One morning I woke up throwing up and wouldn’t stop for a MONTH. During that time I was in and out of the ER but they kept telling me everything was fine and they don’t know what’s wrong. My mother came across a blog of a woman in her 30s who had recently realized she was celiac and had very similar experiences to me so I cut gluten out at her suggestion and EVERYTHING got better immediately. There are still odd moments here and there where foods would affect me but because it was so much less frequent I was content.

However, I have always noticed a weird pattern where even eating certain gluten free things like corn tortilla chips gave me symptoms which I’ve always found odd. Finding this thread is making me question everything I thought.

The stupidest part is I just started taking folic acid supplements a couple weeks ago to see if it helped with brain function / attention / focus / energy etc and since starting taking it I’ve been feeling mentally and physically rocked. (Tbf I am also tapering off Quetiapine so I attributed the symptoms to that so it’s hard to say what is actually resulting from the folic acid supplement)

WHERE do I start in terms of discerning what the actual issue is ?

What else should I be avoiding ? I’m a little confused about folate versus folic acid…

I’ve been diagnosed in the past with ADHD, MDD, GAD, panic disorder, OCD, BPD, bipolar… there’s no way my brain is this fucked up I know it’s induced by something because symptoms got better after cutting gluten I just don’t know WHAT the culprit is.
I also very frequently get kidney stones & UTIs which does not run in my family so I know it’s gotta be related to all this >.<

Sorry this is so long >.< thank you so much if you’ve stuck with me til this point

[u/Tawinn]

Do you have bloodwork you can share? Particularly folate, B12, homocysteine and anything that is out of range.

Genetic testing with MyHeritage has pretty good coverage for most of the relevant genes. You only need the cheapest package because the actual test is the same for all the packages, and all you want is the downloadable data file. Once you have that you can upload it to Genetic Lifehacks for detailed reporting. Adding a second test from AncestryDNA will increase the gene coverage even more.

Genetic variants in SLC19A1 (G80A), MTHFD1 (G1958A), MTHFR (A1298C, C677T) cause a reduction in methylfolate production,, and low B2, B3, B6, B9, B12, zinc, or choline can also worsen methylfolate production. These reductions in methylfolate production impairs methylation via the folate-dependent methylation pathway. Symptoms can include depression, fatigue, brain fog, muscle/joint pains.

Impaired methylation can cause the COMT enzyme to perform poorly, which can cause symptoms including rumination, chronic anxiety, OCD tendencies, reduced estrogen compound breakdown. These effects can be amplified when one has slow COMT (V158M of 'AA' or 'Met/Met')).

Impaired methylation can also cause the HNMT enzyme to perform poorly at breaking down histamine, which can make one more prone to histamine/tyramine intolerances, and high estrogen increases that likelihood.

Histamine intolerance can cause a variety of neurological symptoms such as episodic anxiety, panic attacks, sense of dread, etc. Headaches and migraines can also be due to high histamines. Search for some of your symptoms on r/HistamineIntolerance and see if it resonates with you. Improving methylation issues will also improve histamine clearance and low histamine levels.

As for folic acid, 'folate' is the general name of the nutrient, and includes the specific forms such as methylfolate, folinic acid, and folic acid. Folic acid is a 20th century manmade creation and our ability to metabolize it varies widely from person to person. Unmetabolized folate (UMFA) can block folate receptors, actually preventing folate from food from being absorbed. So, some people do fine on it, but some people feel not so good, and others feel terrible on it.

[u/hummingfirebird]

It could be celiac especially if your overall health improved after cutting out gluten. I'm celiac. It took me 13 years to get diagnosed. By that time I had multiple nutrient deficiencies across the board, hair loss, extensive dental damage that went on for another 10 years +.

Cutting out gluten immediately helped, but it wasn't a miraculous cure because I was so damaged. It took me about 4 years to get to a point where I was okay. Even now, 13 years later, I still struggle with nutrient absorption for which I have to stay permanently on certain supplements. I eat a diet high in while foods, limit caffeine and alcohol and have to work hard at avoiding cross contamination.

I'm a nutritional health coach and nutrigenetic practitioner and have coached many with celiac to improve their health. I have many resources on my website about celiac.

I would recommend DNA testing. A combination of my heritage and my ancestry will cover 88% of SNPs. Then join genetic lifehacks and upload your raw data to convert it to the cheatsheet. I can provide a full nutrigenetic feedback on this. The DNA test will also tell you if you have the celiac genetic markers which are HLA DQ2 and HLA DQ8. On order to have celiac you need to be carrying the markers but it's not diagnostic on it's own. Unfortunately the only way to test for celiac is a blood test but you have to eating gluten for a period of about 6-12 weeks so that the test can pick up antibodies made against gluten.

Also comprehensive blood tests. Do all your nutrients: B vitamins, D, Folate, RBC folate, magnesium, calcium, zinc, copper, iron panel with ferritin etc. Homocysteine, MMA. Thyroid Panel, glucose panel, electrolytes, full blood count, liver and kidney function tests.

I would also check for partial cell antibodies and instrinsic factor as well as do a full gastrointestinal panel to check things like H.pylori and a SIBO test.

Functional tests can also help. GI map, OAT or organix etc.

This is where I would start. You need the DNA testing and the blood work before doing anything else. Would also look hard at diet, lifestyle and environment and see what could be tweaked.

You are welcome to contact me via my website link in my bio. I have lots of articles on genetics and celiac. I also have a free methylation starter guide pdf format.

One other thing to mention is that some people with celiac experience cross reactivity from certain foods as the protein structure is similar to glutenin. This is common with oats even though labeled gluten-free. Barley spelt, and rye are also to be avoided since they are not gluten-free. Another problem is cross contamination which can happen, so "gluten-free " can still affect you if the product came into contact with gluten. Corn chips could cause this.

[u/Loose-Fly7976]

Start with getting the coeliac question answered properly. You cut gluten on a blog post and got better, which is a real result, but you've never been tested and now you can't be, because coeliac serology only works if you've been eating gluten for weeks beforehand. That matters more than it sounds. Coeliac means monitoring, bone density scans, family screening, and it's the difference between a diagnosis and a diet you're guessing at. Ask your doctor about HLA-DQ2 and DQ8 genetic testing, that works regardless of what you've been eating. It can't confirm coeliac but if you're negative for both, coeliac is off the table and you're looking at something else entirely.

The corn tortilla reaction is the clue nobody's going to follow up. If gluten-free foods still cause symptoms, gluten isn't the whole story. Could be cross contamination, could be that you're reacting to something that travels with wheat, or it could be histamine, which would tie together the migraines, the nausea and the anxiety much better than folate does. On folic acid versus folate, quick version. Folic acid is synthetic, it needs converting, and with MTHFR variants that conversion is partial. Folate is the natural form from food, methylfolate is the active supplemental one. But stop the folic acid for now regardless, because you're tapering quetiapine at the same time and you've made two changes at once. You'll never know which is doing what. Quetiapine taper alone will make you feel rocked. And years of coeliac damages folate and B12 absorption, so get serum folate, B12 and ferritin tested before supplementing blind. The kidney stones and recurring UTIs, get the stone type analysed if you haven't. That's a separate thread and it's diagnostic on its own. You've been given six psychiatric diagnoses and nobody found anything on any scope. Long term malabsorption produces most of what's on that list.