Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

DR1-DQ5 neurological symptoms


Murilo P

Recommended Posts

Murilo P Apprentice

I asked my wife to do a HLA class 2 test because of the symptoms that I have been noticing on her. It triggers her 3 days of acute depression, acute irritability, and acute anxiety (panic), besides sinus headache. However, she has eating compulsions and cravings which lead her to stay in denial of the problem.

The test results were:

DRB1*01:ETYDR DRB1*01:ETYDS - Sorological equivalent: DR1, DR1
DQB1*05:EWGMA DQB1*05:EWGMB - Sorological equivalent: DQ5, DQ5

Basically, she got DR1-DQ5 type from both parents. I have found some evidence that DR1-DQ5 is linked to neurological symptoms, but this link seems very loosely documented. Therefore, I need to find, somehow, some concrete evidence that gluten is causing her symptoms so that she gets convinced to quit gluten consumption for good. I am about to split (because of her unstable moods and aggressiveness), but I'm still willing to give it the last shot. Maybe she needs to do some specific antigen exam? How can I find this "concrete evidence"?

 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

The genetic test results provided do not indicate celiac disease or gluten sensitivity. Celiac disease is most commonly associated with the HLA-DQ2 and HLA-DQ8 genetic markers. Specifically, individuals with celiac disease often have the alleles HLA-DQ2.5 (DQA105:01, DQB102:01) or HLA-DQ8 (DQA103, DQB103:02).

Your results show:

  • DRB1*01: Serological equivalent DR1
  • DQB1*05: Serological equivalent DQ5

These alleles are not associated with the high-risk genes for celiac disease. Therefore, based on these genetic results alone, you do not have the primary genetic markers typically linked to celiac disease. However, it's important to note that while these genetic markers are necessary for the development of celiac disease, their absence does not entirely rule out the possibility of gluten sensitivity or other non-celiac gluten-related disorders.

For a definitive diagnosis, further clinical evaluation, including serological tests and possibly a biopsy, would be necessary. 

This article has more info on blood tests for celiac disease, which would be the best way to determine if she has issues with gluten--but, approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

 

 

Link to comment
Share on other sites
Murilo P Apprentice

Thanks, Scott, but your reply is not very useful to me. Your directions only reaffirm my perception of this being hopeless.

A few months ago she ate a lot of cake and the very next day she wanted to commit suicide. I have recorded her suicide notice message. This is how bad it gets. But you tell me (from the linked article) that she needs to consume gluten for months before doing the antibody test to avoid false negatives (which we had already). It can't be that hard to diagnose something that is so pronounced. The answer must be around the corner. I only need one of those:

  • a paper establishing the link between DR1-DQ5 and her psychiatric (neurological) symptoms
    or
  • any other exam that does not require her to consume gluten again

Otherwise, I'll have to split again, but this time just stand and wait for the worst (instead of trying to rescue her). And we have a 6-month-old baby (who is still doing well).

Link to comment
Share on other sites
Scott Adams Grand Master

Sorry, I can't change her genetics, and am just replying to your query about her genetic markers as they might relate to celiac disease.

It's unclear from your posts whether or not she's ever had a blood test for celiac disease, has she? If so, can you share those results? If not, this would be the only way to diagnose celiac disease. It sounds like she's been eating gluten daily, but I could be wrong. As mentioned, it's even more likely that she could have non-celiac gluten sensitivity, and currently there is an accepted screening method for that, however, Enterolab offers a stool screening for it, so perhaps you can try that?

Have you discussed your concerns with her? If I understand correctly you've established a link between her gluten consumption and her negative behavior patterns, but she doesn't agree. Has she noticed a connection? Does she have other symptoms of gluten sensitivity? Would it take some sort of positive test result for her to try out a gluten-free diet? Obviously she could go gluten-free without doing any tests to see if it helps with her symptoms, but she would need to be open to this idea.

Since you both have a child together I recommend that you try going to a couple counselor to see if you can work out some of your issues.

 

Link to comment
Share on other sites
Murilo P Apprentice

Hey Scott, let me clarify. We are from Brazil and the issue is not about the couple. The problem is that:

  • she is compulsive about certain foods (and has suffered from anorexia nervosa / bulimia)
  • she has a strong tendency to stay in denial about her problems (which is a personality trait)
  • she has little self-awareness about her emotions and behavior (therefore has a hard time observing the neurological effects of gluten consumption)

This is why I need evidence of how gluten-containing foods affect her brain/mood.

By March 2023, I noticed that her issues were always triggered by gluten consumption, so I quit buying gluten-containing foods. Though she consumes gluten-foods once in a while when she is hanging out without me. Therefore, I have observed her acute neurological symptoms happen again many times, which is way more than enough to confirm it for me, but not for her.

Last year, she did some antigen tests. The results came back negative. Maybe this was to be expected since we were on a gluten-free diet already. However, the negative results only strengthened her will to eat gluten-containing foods. She agreed to stay gluten-free during the pregnancy since she was afraid of the effects it could have on our baby. However, after giving labor she decided to "free herself". The diet change made her aggressive, which led me to ask for a temporary split, so she moved to her mom's house for a few days. But my decision backfired because she told her family that the results came back negative and then ate more gluten than ever before. Her family thought that the bread and cake would make her happy, but those foods only made her suicidal and completely consumed by panic attacks. This situation got her "stuck" in her mom's house for a couple of months since her specific phobias got 10x worse.

Then I got her "recovered", but still I need the evidence because the only symptoms that she recognizes are the headaches, and when she feels the smell of MacDonalds, she doesn't worry about the severe headaches she will get over the next few days.

Btw, this year her mom made her go to a psychiatrist and then she took "Equilid" medication (based on sulpiride) for one month, but I think this only brought a new problem to the equation. As a side effect, her sporadic visual and auditory hallucinations got a bit worse. But this is the smallest of all issues. I am not sure if the hallucinations are gluten-related, but I know DR1 is a factor for schizophrenia.

I'm also unsure if other foods might also be triggers for neurological symptoms since she appears to have not just a leaky gut, but also a leaky brain (<= excellent link).

PS: Enterolab exams are only for US/Canada, but there are some microbiome tests available in Brazil, so I'll check how they compare.

Link to comment
Share on other sites
shadycharacter Enthusiast
2 hours ago, Murilo P said:

Hey Scott, let me clarify. We are from Brazil and the issue is not about the couple. The problem is that:

  • she is compulsive about certain foods (and has suffered from anorexia nervosa / bulimia)
  • she has a strong tendency to stay in denial about her problems (which is a personality trait)
  • she has little self-awareness about her emotions and behavior (therefore has a hard time observing the neurological effects of gluten consumption)

This is why I need evidence of how gluten-containing foods affect her brain/mood.

By March 2023, I noticed that her issues were always triggered by gluten consumption, so I quit buying gluten-containing foods. Though she consumes gluten-foods once in a while when she is hanging out without me. Therefore, I have observed her acute neurological symptoms happen again many times, which is way more than enough to confirm it for me, but not for her.

Last year, she did some antigen tests. The results came back negative. Maybe this was to be expected since we were on a gluten-free diet already. However, the negative results only strengthened her will to eat gluten-containing foods. She agreed to stay gluten-free during the pregnancy since she was afraid of the effects it could have on our baby. However, after giving labor she decided to "free herself". The diet change made her aggressive, which led me to ask for a temporary split, so she moved to her mom's house for a few days. But my decision backfired because she told her family that the results came back negative and then ate more gluten than ever before. Her family thought that the bread and cake would make her happy, but those foods only made her suicidal and completely consumed by panic attacks. This situation got her "stuck" in her mom's house for a couple of months since her specific phobias got 10x worse.

Then I got her "recovered", but still I need the evidence because the only symptoms that she recognizes are the headaches, and when she feels the smell of MacDonalds, she doesn't worry about the severe headaches she will get over the next few days.

Btw, this year her mom made her go to a psychiatrist and then she took "Equilid" medication (based on sulpiride) for one month, but I think this only brought a new problem to the equation. As a side effect, her sporadic visual and auditory hallucinations got a bit worse. But this is the smallest of all issues. I am not sure if the hallucinations are gluten-related, but I know DR1 is a factor for schizophrenia.

I'm also unsure if other foods might also be triggers for neurological symptoms since she appears to have not just a leaky gut, but also a leaky brain (<= excellent link).

PS: Enterolab exams are only for US/Canada, but there are some microbiome tests available in Brazil, so I'll check how they compare.

Have you ruled out wheat allergy? The solution is similar, to stay away from wheat, and testing might be easier because it probably won't require her to eat gluten as preparation. 

Link to comment
Share on other sites
Scott Adams Grand Master

I am definitely not a psychologist or expert in that area, but it seems like even if you found some test that indicated that she has gluten sensitivity, she may not believe it anyway, and would still continue eating gluten.

Has she ever agreed with you that gluten causes some of her mental and other health issues? Has she ever been gluten-free for at least 3 months? 

In the end such a dietary change would have to be accepted by her, and you may not be able to convince her that being gluten-free will help her.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master
Murilo P Apprentice
19 hours ago, Scott Adams said:

I am definitely not a psychologist or expert in that area, but it seems like even if you found some test that indicated that she has gluten sensitivity, she may not believe it anyway, and would still continue eating gluten.

Has she ever agreed with you that gluten causes some of her mental and other health issues? Has she ever been gluten-free for at least 3 months?

She did. While living with me, she has been consuming gluten once every 2-6 weeks, when she visits the shopping mall or after some "careless accidents" regarding the food bought online (such as ifood). However, during pregnancy, she did stop sneaking herself off the diet after I explained it could harm the baby. Using articles and videos from doctors, I explained that her sinus headaches happened because gluten was an inflammation promoter and that this could affect the baby's development. With that, she did stay gluten-free for more than 3 months. She also consumed marijuana during pregnancy (secretly) and I also convinced her to stop doing it, and I believe she hasn't used it since. Like in the case of gluten, I explained to her how the psychoactive effect of that herb could affect the baby's brain development (and showed some evidence). Therefore, it is not impossible to persuade her to be gluten-free for good.

Thanks for the links. I will dig into those articles.

Link to comment
Share on other sites
RMJ Mentor

Would an article like this help?  If so I can look for more.

Case of coeliac disease presenting in the psychiatry ward

Link to comment
Share on other sites
Murilo P Apprentice
On 7/4/2024 at 6:58 PM, RMJ said:

Would an article like this help?  If so I can look for more.

Case of coeliac disease presenting in the psychiatry ward

Yes, thanks. I have shown her the first two and last two sections of this study. To grab her attention, I used Google Translate, shrib.com and ReadAloud Firefox extension on my phone. I think the information helped a bit, but I still need something that links to her DR1-DQ5 test results, or some new exam. I'm now checking if we can do a brain MRI exam to search for the same white matter defects seen in that study.

Link to comment
Share on other sites
knitty kitty Grand Master
Posted (edited)

I think your wife would do much better if her nutritional deficiencies were addressed.  Celiac Disease causes malabsorption of nutrients due to the damage and inflammation done to the digestive tract.  The additional demands of pregnancy on the mother can cause nutritional deficiencies that can mimic behavioral disorders like schizophrenia.  

Bulimia and anorexia nervosa are both symptoms of Thiamine deficiency.  Cravings for micronutrients (B vitamins) can lead people to return to eating gluten products. Gluten products are required to be enriched with vitamins, while gluten free versions are seriously lacking in vitamins and nutritional value. 

Thiamine deficiency (Wernicke's Encephalopathy) causes white spots in the brain.  

Some people develop antibodies (tTg 6) against gluten that attack the brain causing gluten ataxia.  

https://pubmed.ncbi.nlm.nih.gov/28819077/

https://pubmed.ncbi.nlm.nih.gov/38680259/

https://pubmed.ncbi.nlm.nih.gov/30885888/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7432597/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6895422/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11045506/

Riboflavin Vitamin B 2 deficiency causes migraines.  High histamine levels can cause sinus blockage and affect behaviour.

Histamine Intolerance—The More We Know the Less We Know. A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/

 

Histamine intolerance and anxiety disorders: pilot cross-sectional study of histamine intolerance prevalence in cohort of patients with anxiety disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9563864/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5698467/

The Histaminergic System in Neuropsychiatric Disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8467868/

 

Nutrition, nutritional deficiencies, and schizophrenia: An association worthy of constant reassessment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8554424/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7982519/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8453603/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441951/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248201/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192507/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7442351/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4288963/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10108429/

Association of HLA-DR/DQ polymorphisms with schizophrenia in Tunisian patients  (DR1-DQ5 is protective)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6074579/

https://pubmed.ncbi.nlm.nih.gov/32957818/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9825115/

https://www.psychiatrist.com/pcc/wernickes-encephalopathy-diagnosis-adequate-treatment/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

https://pubmed.ncbi.nlm.nih.gov/37153911/

https://pubmed.ncbi.nlm.nih.gov/37458305/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9472043/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9472043/

https://healmindbody.com/10653-2/

https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.2018.17070836

https://academic.oup.com/schizophreniabulletin/article/42/2/369/2518938

https://academic.oup.com/schizophreniabulletin/article/35/1/213/1927632

Attenuated niacin-induced skin flush response in individuals with clinical high risk for psychosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9039376/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7975150/

In correcting vitamin deficiencies, more than the Recommended Daily Allowance is needed. A prenatal or one a day multivitamin will not be sufficient to correct deficiencies.  

Doctors rarely recognize nutritional deficiencies affecting mental health.  Speaking from personal experience.  

Edited by knitty kitty
Typo correction additional information
Link to comment
Share on other sites
Murilo P Apprentice
On 7/6/2024 at 11:07 PM, knitty kitty said:

Bulimia and anorexia nervosa are both symptoms of Thiamine deficiency. 

Thanks, @knitty kitty. I didn't know about that. I see this study states that Thiamine deficiency can induce anorexia, indeed.

I have already reviewed the first 10 links you sent. I know how histamine levels are important. I read the Nutrient Power book by William Walsh, which links it to "undermethylation", which in its turn is linked to anorexia nervosa in the book. I found it interesting to read about the high histamine rat's aggressiveness, including the ABB (aggressive bite behavior). That resembles how she behaves in certain situations, and a couple of days earlier she had ABB'd me, indeed. When she turns off the heat, she says that she can't control herself, but I guess she can because she displays socially acceptable behavior when we have someone visiting us. This is because she is overly worried about her self-image.

I have always tried to promote supplements into her diet, to address deficiencies she is likely to have (shows symptoms of), but they are too many and I can't get her to take all of them. She only takes the capsules after lunch (to avoid throwing up) and uses about 150 ml of water for each capsule. Thus, she can't take too many as her stomach is already full after lunch. Sometimes I also use the smashed banana capsule wrapping method, which allows us to swallow it without water, but that is so much extra work for me. I also tried some things in powder form, but she never liked the taste. She is very sensitive to unusual tastes.

She doesn't cooperate in helping herself with this treatment because she has the old mentality that only medications are powerful, not nutrients. And it is hard for me to advocate for the supplements because most nutrient deficiencies can't be properly diagnosed through blood exams (since those exams only check serum levels). The Walsh Institute has intracellular exams that diagnose well some imbalances, such as zinc/copper levels, but that's not available in Brazil.

Anyway, she usually takes iron, omega-3, some B vitamins, zinc, and magnesium, but very sparsely. The next might be the 250mg B1 capsules (a pretty strong dosage). I may also try B3 (Niacin). There are a few articles about B3 from Andrew Saul on his site for treating mental health issues such as squitzofrenia and psychosis. I did give her a few B3 last year but the bottle has expired.

Recently I have been focusing on giving her arginine powder. It has a strange taste indeed, but I mix it with decaffeinated coffee. The initial idea was to increase her vasopressin, as a possible cause of low oxytocin and low breast milk production. In my perception, it had striking effects. The arginine seems to have promoted improvements in her low blood pressure, emotional resilience, vaginal infection, and low milk production, all at once.

I'm also considering buying some of the expensive Omnilife products. As you know, all multivitamin products rely on daily allowances, so it's not much, but those are special as they promote 100% absorption. They use altered vitamin formulas that include micelles (just like soap) and this makes them dissolve in water to the smallest size (of individual molecules). I know they are effective because we can feel the effects shortly after. A couple of years ago, they helped me to quit smoking (and there are many testimonials of others over the internet).

Link to comment
Share on other sites
knitty kitty Grand Master
6 hours ago, Murilo P said:

I read the Nutrient Power book by William Walsh, which links it to "undermethylation", which in its turn is linked to anorexia nervosa in the book.

Undermethylation is due to deficiencies in Thiamine and Cobalamine B12, and Folate B 9.

Dr. Lonsdale and Dr. Marrs' website explains it here.

https://hormonesmatter.com/paradoxical-reactions-ttfd-methylation-connection/

Thiamine can't work properly if there's insufficient Cobalamine B12 and Folate B 9 for the methylation. 

The eight essential B vitamins work all together.  You won't get the best benefit by taking just Niacin or just B12, because somewhere down the line another B vitamin that you're not taking or are low in is needed.  

So a B Complex is good idea.  Or take each B vitamin individually.  There are liquid forms of B vitamins, if swallowing pills is an issue. 

6 hours ago, Murilo P said:

she says that she can't control herself, but I guess she can because.....

Having been there, no, she can't.  There can be so many thoughts and "noise" from emotions that stressful situations can provoke, they can become overwhelming and the primal physical side kicks in automatically to protect oneself from such an onslaught or to escape.  Don't pressure her to such high anxiety levels.  

7 hours ago, Murilo P said:

The next might be the 250mg B1 capsules (a pretty strong dosage).

Try TTFD Tetrahydrofurfuryl Disulfide (Allithiamine) as Dr. Lonsdale and Dr. Marrs site explains.  TTFD made a huge difference for me.  Elliott Overton has his own site and YouTube channel, EO Nutrition.  

Have you read my blog? 

Link to comment
Share on other sites
KathleenMK Rookie

I love that you are looking for nutritional ways to help your wife and Knitty Kitty has given some detailed research about the B vitamins which are so needed in nerve and brain function. Craving gluten filled carbs maybe be a symptom of needing those B vitamins.

Chemistry is only part of the problem. I come from a family history of depression( lost family members to suicide) and had post partum myself and would say you need to balance nutritional treatments with the social and psychological care. Drugs and supplements are helpful but expensive. Sunshine and fresh air are free ways to increase well being. Strolling to the local park would give exercise, sunshine and maybe a chance to meet other new moms.  Modern society lacks the social network for new moms. I found La Leche League was helpful not just for breastfeeding help but for the support of other new moms. Encourage your wife to get a little sunshine and socialize with other new moms. Some times alittle support and improved nutrition is all a mom needs but Suicide Ideation calls for professional psychological help. Good luck finding the right balance of things to help your wife. Remember sometimes they don't want you to fix it, but just listen.

Link to comment
Share on other sites
Murilo P Apprentice

Hey knitty kitty,

William Walsh explains that methylation is primarily determined by genetics, though they said it can not be predicted only from genetics since there are too many genes involved, doing a "tug of war", as this Facebook post explains.

Then, the nutrient levels would come as a way to modulate methylation, apart of your genetics. The quick way to increase methylation (and lower histamine as a result) would be with SAM-e. I have tried SAM-e but I didn't see any significant change in her overall status. Maybe the local SAM-e is not as good as the enternic-coated one that I can buy overseas, but this is expensive and doesn't look like a complete or permanent solution, since it does not address the root cause of undermethylation.

The idea of B1+B9+B12 is more convincing. By the way, Walsh discourages B9 (folate) for depressed patients because it can worsen depression as it acts as a serotonin reuptake promoter. But I guess it will be ok if we don't push the folate too fast.

Your blog, I see now. So it seems like thiamine was key in your treatment. It seems like you had ataxia symptoms. I don't think she has the ataxia symptoms, but it's worth looking closer into B1 because of her anxiety and the protective/therapeutic effects (thanks, I watched one of Elliott's videos).

Here in Brazil, I can easily find some B1 derivates such as Sulbutiamine and Benfotiamine. There is also Fursultiamine but only for pets. I don't find TTFD, except for one seller posting it for 20 times more expensive than a bottle of regular B1 or B1 derivate. Because of the price, I'll assume TTFD is an optional upgrade, but please correct me if you think it is not substitutable.

Are those derivates better than injectable vitamins? Here, we can do B1, B6 and B12 injections easily.

Currently, she is getting a capsule with 10 mg of B1, 10 mcg of B2, and 100 mg of B3. Sometimes B6 and B12 as well, rarely B9. I may buy a B-100 bottle and take it with her - it has 100 mg or 100 mcg of each B vitamin.

I'll write a blog about her too. I hope I'll be able to edit it later and add a happy ending like yours. But this will depend mostly on her cooperation, so I don't want to create expectations. I try to keep myself detached from the results (as a physician would do).


 

Link to comment
Share on other sites
knitty kitty Grand Master

@Murilo P,

All the vitamins and minerals have been important to recovery.  

Vitamin D is an important immune system regulator and can help lower inflammation.  Vitamin D improves depression.  Mine was severely deficient.  Vitamins A, E, and K are the other fat soluble vitamins.  (Vitamin E is mostly made from wheat, so be careful there.)  People with celiac disease frequently have trouble absorbing fats and are frequently low in the fat soluble vitamins as well as Omega Three fats.  The brain needs these healthy fats.  

https://www.nichd.nih.gov/newsroom/news/022124-omega-3-supplements-schizotypal-personality

Niacin really made a big difference in brain function, too.  Niacin deficiency symptoms are called the Four D's:  diarrhea, dermatitis, dementia and death.  I had dementia as well as ataxia.  Tryptophan, made from Niacin, helps heal the digestive tract and is needed to make feel good neurotransmitter dopamine.  Only a small amount of Niacin is converted to tryptophan, so increasing tryptophan foods (NOT Dairy) or taking a tryptophan supplement is very helpful.  Tryptophan has been more helpful to me than SAM-e.  To lower histamine, look into Betaine Hydrochloride supplements.  

Walsh isn't looking at Celiac patients.  We tend to have lower folate than the general population he is addressing.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617727/

I would not trade my Allithiamine TTFD for another form.  I take Allithiamine and Benfotiamine, every day, doses differ.  I haven't tried the other kinds yet.  I notice a difference in brain function if don't take the Allithiamine.  Elliott Overton markets Thiamax.  I tried that, but still prefer the Allithiamine.  

I think a B 100 Complex is a great idea.  I took additional Allithiamine and Benfotiamine with my B 100 Complex.  What kind of B 1 is in the vitamin you are giving her?  If it's thiamine mononitrate, it's not going to be utilized well.  If Thiamine Hydrochloride, doses of 500 mg or above are used in deficiency correction.  Lower doses of Allithiamine TTFD and Benfotiamine are required.  

Be encouraged.  You're doing an admirable job helping your wife.  I appreciate it.  

Link to comment
Share on other sites
Murilo P Apprentice

@knitty kitty,

Yes, I have been trying to give her all the vitamins but this is how hard it is: I need to offer the vitamins at the perfect moment, just after she ate some meal. But she needs to be in a good mood. Also, I have to be around until she swallows them, otherwise she will "forget" (her memory and attention have been very weak, indeed). While being around, I need to keep reminding her about the pills, while still keeping her in a good mood. This demands a lot of time and patience from me. One year ago she used to throw the pills away secretly and lied to me stating she took them. I'm not sure if she still does that, because she lies about stuff. Just to clarify, her lying was never a result of pressure, it is a habit (she lies to her parents and closest friends as well).

So I have to focus on the most curative supplements (that have more lasting effects), pick the strongest dosages, and alternate them each day. For instance, Tryptophan was also helpful to her but it is not curative, so I don't buy it anymore because I need room for other supplements, such as Vitamin D3, which is more important. And I buy the 200.000 UI dosage per capsule of Vitamin D3, which is ok since we don't take it every day (used about 5-8 caps per month), but it's not the top-quality version with all 8 subtypes of D3.

You said that Bulimia and anorexia nervosa (AN) are both symptoms of Thiamine deficiency. I searched that but the studies I found pointed it the other way around, for AN causing Thiamine deficiency. And I found this study but it does not find a strong correlation (38% were deficient, 19% severely). https://pubmed.ncbi.nlm.nih.gov/11054793/

Anyway, I believe I know what caused AN on her. She was short on money, so she decided to eat "Brazilian Raindrop Beignets" made with pure wheat flour (and no other ingredients) as her main meals of the day. Then she had a severe gut infection that got her hospitalized. The infection was probably caused by the consumption of dairy products made from raw milk (directly from the cow, because she was living in a rural city). As you might imagine, they gave her loads of antibiotics and discharged her without any advice to eat probiotic foods to restore the gut microbiome. As a result, she continued on the same diet she did before. Then she started to lose weight and started having major problems in all aspects of her life (study, relationships, and finances). Then she came back to her family but didn't improve. At times she would stop eating for a week and then go for a MacDonalds milkshake. She thought it had to be something very good to compensate for the guilt of breaking her "fasting". Can you imagine the effects of that on her microbiome? So she kept losing weight until her dad took her to treat her AN with medication. The treatment made her weight stable but then she started to develop anxiety disorders (which she didn't have before). She remained super skinny for one more year and refrained from being with any men - until she met me.

Thinking about her health, I hired a food cooker for us, who prepared all of our food 3x per week. Then she gradually regained her normal weight, especially after she got pregnant. Knowing the baby needed nutrients, she began to take her diet seriously. However, after labor, she quit caring about her diet.

So, although I have never seen her gut from the inside, I see all of the reasons to believe that her problems come from there - that her gut is still unhealthy and hasn't recovered yet from the severe diet abuse (excess sugar and gluten). Does that make sense to you?

Currently, the most promising gut treatment I have in mind is the one that I talked about in another post, about water ionizers, because there are enteroscopy images to prove its efficacy. She has also agreed to do enemas but did them reluctantly (not many times and not well done), and I didn't see results, so I haven't asked for that anymore. Now I'm researching about to spread the treatment water through the entire gut (such as the ionized water).


 

Link to comment
Share on other sites
Murilo P Apprentice
On 7/9/2024 at 4:49 PM, KathleenMK said:

Chemistry is only part of the problem. I come from a family history of depression( lost family members to suicide) and had post partum myself and would say you need to balance nutritional treatments with the social and psychological care. Drugs and supplements are helpful but expensive. Sunshine and fresh air are free ways to increase well being. Strolling to the local park would give exercise, sunshine and maybe a chance to meet other new moms.  Modern society lacks the social network for new moms. I found La Leche League was helpful not just for breastfeeding help but for the support of other new moms. Encourage your wife to get a little sunshine and socialize with other new moms. Some times alittle support and improved nutrition is all a mom needs but Suicide Ideation calls for professional psychological help. Good luck finding the right balance of things to help your wife. Remember sometimes they don't want you to fix it, but just listen.

Kathleen, I'm sorry about your family members. There are many different types of depression though. Walsh describes 5 distinct major types in his book. She is not depressed all the time. She is actually enthusiastic most of the time. She has anxiety-related issues from her family and can easily cry about day-to-day things because she is sensible, but can more easily laugh (she laughs a lot with me). She only gets deeply depressed after consuming gluten.

As you know, things that run in the family are related to genetics. The depressed patient will frequently find psychological reasons to blame for how they feel, and those reasons are real for them, but different persons react in different ways, and the same person can also react in a different way for the same circumstance depending on how their biochemistry is at the moment.

Most people think it is useless to talk about genetics as they think about that as something that can't be changed, but that's not true, because:

  1. We can't change the DNA sequence, but can change its markers, therefore changing our genetic expression (which is known as epigenetics)
  2. Most of the DNA in our body does not come from our own cells but rather from our gut bacteria, which can be changed with probiotics, diet, and gut treatments
  3. What actually matters is the entire biochemistry of that person at a given moment. That can be worsened by nutrient deficiencies or excesses (such as mineral overload) or can be fixed by using the right supplements.

With that, I'm not denying the power of psychological aspects of someone's life. Having entertainment certainly helps with depression, but at the moment her biochemistry is not quite allowing for that. She has panic syndrome, so she seldom gets out of home. When she has panic attacks at home, cuddling with me always resolves it, but ironically there is another problem that prevents me from helping her in other places (other than our home). She has developed a strange specific phobia, which prevents her from walking around me. When she is with her mom, she says her mom makes her anxious. When she is by herself, she has fears related to the baby so she returns home quickly.

I found out the source of her specific phobia (which prevents her from walking around me), but haven't found out how to fix it yet. It comes from a trauma she had six months before meeting me. There was a night in which she didn't have the means to get back home, so she spent an entire night crouching to hide herself from the risk of being discovered by other men. Nothing bad happened, but the experience of being exposed along with the feeling of being in danger was registered in her brain as traumatic.

In the beginning of our relationship, this was not a big problem, since we could still hang out together even though she was very uncomfortable walking. However, specific phobias can get worsened by protective behavior and this is what she did with efforts to avoid walking, such as lying to me about having hurt her leg and asking me to take her from the car to home on my lap. For more than a month I believed she really had a problem with her legs, then I figured out what was really happening, but she would still not admit the truth. That was until I showed her that I had secretly filmed her walking normally at home with a hidden camera. It was too late though.

So I think all of that has very strong biochemical origins. I don't mean to diminish the power that the environment has over someone's well-being. The psychological effects are important too. Actually, both of us are undergraduate students in psychology with more than half course done. Also, she is having weekly therapy sessions with a good psychologist, who is specialized in anxiety and phobias. I don't think this professional will be able to get her recovered but may help her to gain the trust needed to try making a move.

Today I was talking to her about possible workarounds. She is interested in the wheelchair idea. Because we haven't gone out together for over one year now. I'm also elaborating on some creative ideas such as using clothes around an umbrella to produce a closed canopy, allowing for the gradual exposure treatment.

 

Link to comment
Share on other sites
Wheatwacked Veteran
On 7/9/2024 at 9:22 PM, Murilo P said:

The quick way to increase methylation (and lower histamine as a result) would be with SAM-e.

Try Choline.  Eating eggs, liver, beef, dairy, or supplementing.

There are three essential vitamin paths to methylation. 

  1. B6 rda is 2 milligrams.
  2. B9 Folate the rda is 400 micrograms and requires B12.
  3. Choline, formerly know as B4.  The rda is 450 mg. Why did it lose status as a B vitamin?  Probably a good story there.

Clearly by mass alone choline is so much more.  Yet studies of western populations estimate only just over 10% get more than the minimum.

As for her mental status.  Higher daily intake of vitamin D changed my world.  250 mcg a day for 10 years.

A study was done in Texas and they found a reverse correlation between ground water content of Lithium and depression, drug adiction and crime.  Counties with less ground water Lithium had higher rates of crime.  I took 5 mg Litium a day for a few months and it did definitely help with anxieties.  Most bottled water does not have lithium.

Hey, start a thing. Take your vitamins together.  Even if you don't need them, they won't hurt you and it may promote bonding.  At the right dose the vitamins beneficial effects present in days.

Also remember, there has been lots of research on vitamin D and depression.  It can mitigate the effect of the gluten regardless of genetics.

Is Vitamin D Important in Anxiety or Depression? What Is the Truth?

Last but not least: WHEAT PRODUCTS ARE ADDICTIVE.  It seems to turn on the opiod receptors.

Quote

Wheat is an addictive food that no one seems to notice. One of its properties is high gluten content, making “gluten free” the catchphrase for supposedly healthy wheat foods. However, consuming large quantities of wheat is unhealthy, whether it contains gluten or not.  10 Foods That Are More Addictive Or As Addictive As Drugs

 

Link to comment
Share on other sites
Murilo P Apprentice
6 hours ago, Wheatwacked said:

Try Choline.  Eating eggs, liver, beef, dairy, or supplementing.

Yes, we did that during her pregnancy, with fresh liver almost once per week, but recently I'm focusing more on her microbiome with things like kefir and kombucha. I think the full absorption of the food requires excellent stomach acid, digestive enzymes, and a quality microbiome. Therefore, now I think it will be more valuable to invest in special supplements that are easily digestible rather than a cooker.

Your vitamin D3 of 250 mcg is 5.000 UI. In case you don't get direct sunlight exposure, your dosage is sub-optimal. You would need double that to lift your blood levels up to 30 mcg/dl, which is what you get from sunlight exposure. Many specialists suggest 10.000 UI per day (500 mcg), which is what you get with 15 min of sunlight at 12 o'clock (or 30 min for darker skin).

Yet during COVID the recommendation by specialists was 60 mcg/dl. Also, for those deficient in D3, an initial "attack dosage" was recommended, usually starting with 600.000 UI intravenous injections. With 200.000 UI, my capsules are 40 times more potent than yours. It is too much for daily usage but ok for weekly usage for a D3-deficient person.

I also know about Lithium and it is not easy to buy here, but we took two bottles last year.

Yes, many say wheat products are addictive, but that varies a lot per person. The theory says gluteomorphin and gluten exorphin are produced by "digestive enzymes", but I think it works differently for each individual. I believe there are bad gut bacteria that thrive when you eat gluten with fast carbohydrates (such as sugar), and those bacteria gradually increase your gluten cravings as you feed them and they gain space in your gut. And perhaps the oil-based pesticides we eat may also help in the promotion of this unhealthy microbiome, by sticking in the gut walls and killing the good bacs.

Link to comment
Share on other sites
Wheatwacked Veteran
5 hours ago, Murilo P said:

Your vitamin D3 of 250 mcg is 5.000 UI

10,000 IU is 250 mcg.  Read checked myself with the bottle lable.  My last two tests were 93 ng/ml in December and 90 ng/ml. I'm getting about 3 hours S Florida midday sun riding my mower in bathing trunks (shoes and socks of course for safety).  Getting a nice tan.  80 ng/ml is equivalent to 200 nmol/L the measurement system used mostly outside the US.  Way back in 2014 I started at 1000 iu and each week increased daily dose.  At the time I was getting no sunlight.  After a week at 8000 iu I increased to 10,000 IU (250 mcg).  On day three I actually looked at the bottle and declared out loud "This is sunshine in a bottle".  By 2019 my blood level was still only 49 ng/m/.  You have to take into account that Celiac Disease causes malabsorption and since D is a fat absorbed vitamin and I still had not realized how difficient I was in Choline, requirement for fat digestion, so I had two factors limiting my absorption of vitamin D.  Celiac Disease and Choline Deficiency.

 

Edited by Wheatwacked
Link to comment
Share on other sites
Wheatwacked Veteran

Vitamin D Is Not as Toxic as Was Once Thought: &nbsp;A Historical and an Up-to-Date Perspective

5 hours ago, Murilo P said:

recommendation by specialists was 60 mcg

It goes back to a manufacturing error in a baby formula around London in early 1950's resulting in an epidemic of infant deaths.  As a result the UK passed laws banning vitamin D suppliments in food, and all but three countries followed suit.

The RDA is based on the minimum vitamin D needed to prevent Rickets  RDA 600 IU. Safe Upper Limit 4000 IU in the US.

Then there is this scary statement:

Quote

nmol/L>125    ng/ml>50    Linked to potential adverse effects, particularly at >150 nmol/L (>60 ng/mL).   Vitamin D Fact Sheet for Health Professionals

The NIH is defacto promoting low D.  Our bodies homeostasis level for vitamin D is 70 to 90 ng/ml (200 nmol/L) suggested by a study of Israeli lifeguards in August.  Plus cases of hypervitaminosis D is extremely rare.

What convinced me then that D is safe were the numerous studies with kidney transplant patients.  Some were as high a 1.25 million IU bolus (D2 probably) with no negative outcomes compared to other dosing schedules.  Some studies noted that the higher dose patients seemed happier.  I also noticed that most research was restricted to reporting as Less than 29.9 ng/dl or more than 30. Or the equivalent nmol/L as you can see in the statement above.

 

 

Link to comment
Share on other sites
Wheatwacked Veteran

I rebuilt by gut biome with homemade fermented dill pickles.  The lactobacillus excretes lactase in exchange for room and board, allowing me to once again drink three or four glasses of milk a day. A good nutrient source including potassium (DV 4700 g a day which an area concern worldwide for deficiency.

Who started the rumour that milk is not good for humans?  The almond folk?

While I'm at it, Wheat has an omega six to omega three ratio of 22:1.  Highly inflammatory.

Link to comment
Share on other sites
KathleenMK Rookie

Interesting info Wheatwacked on Choline and it being called B4 in the past. We thought my father in law was being scam by some supplement pushing health advisor (chiropractor?) selling him something with B4. We thought it was an imaginary vitamin since we didn't see it anywhere else.

Murilo, my heart goes out to you and your wife. It sounds like you are doing everything you can. praying you find the right mix of nutrition, psychology and divine intervention. I get the drama of trying to get a spouse to take supplements when they crave those forbidden baked goods. Yes they are addictive.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,797
    • Most Online (within 30 mins)
      7,748

    TriciaE
    Newest Member
    TriciaE
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      68.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Peace lily
      Hi everyone I’m from Rhode Island and I know a lot of gluten free products we can’t find here yet but it’s a lot better then before I have cealiac I follow a gluten free diet. In our stores here there getting it . Ive found the brand Schar gluten free pizza two in a package plain made with sourdough actually not bad I put sauce and cheese and what ever toppings you like .For $9.99 it’s pretty good much better then the gluten free pizza at a pizza place ,which I might add I got gluten bad episode. Thanks  peace lily        
    • Elliebee
      Benefits are national but different Drs and health trusts interpret them differently unfortunately. Those diagnosed are supposed to get an annual review, Dexa scans every 2/3 years (one on diagnosis) , annual blood tests to check for vit deficiency etc. But very few seem to get these !    Advice from gastroenterologist:   I suggest monitor if she is asymptomatic, Unfortunately I can not see gastroscopy report, i hope biopsies were taken from D2 and D1. She may also try Gluten free diet for 4-6 weeks and recheck TTG to see if normalise. /—   I know 4 biopsies were taken from D2 in 2021.  I have contacted my private health care provider requesting a referral to gastroenterologist. I’m fed up being monitored! Also worried that if I do have celiac disease I’m damaging my gut and raising risk of cancers which freaks me out !   
    • sboo
      I had a couple of friends who after a course of antibiotics were struggling to eat much. The anti biotucs can kill off alit of your gut bacteria and it took quite some time to build these up again but after a year or so they could eat normally again.
    • trents
      Welcome to the forum, @Patrick-Tyler! I think most of us are at least a little nervous about eating at fast food restaurants, even McDonalds, who claims to offer gluten-free fries.  What does that mean? Only that gluten is not an intentional ingredient or does it also mean the fries are cooked in a dedicated frier? This has long been a question kicked around by our community and I'm not sure anyone has ever found a clear answer. I wounder what kind of an answer you would get if you went to a particular McDonalds and asked the manager, "Do you cook your fries in a dedicated frier or are other food products cooked in the same frier that you use to cook your fries?"  Personally, I have eaten fries and meat patties (I take my own gluten free bread or just eat it as a lettuce wrap) at McDonalds quite a few times over the past 20 years since my dx without any discernable gluten reaction. But I am not a particularly sensitive celiac so what I get away with may not be safe for every celiac.
    • Patrick-Tyler
      Hai Community, I have doubt on  McDonald's? even it is dedicated to fryers and added gluten-free buns, I’d still be nervous about ordering there for my daughter who has celiac. Anyone else feel uneasy about trusting fast food places with cross-contamination? Would love to hear if anyone’s had good (or bad) experiences with gluten-free options at McDonald's or other fast-food restaurants. Thank You...
×
×
  • Create New...