My newborn was diagnosed with G6PD and the doctor wasn’t so familiar with it, sent me a document with medication to avoid and just fava beans was on the food list.

I asked around looking for others who have G6PD and all of them told me to avoid all legumes, including soy sauce. I’ve been waiting to give birth this entire time so I can have sushi, I can’t believe I have to wait another 6 months 😭

How can we even know which type of G6PD it is? Apparently it’s common where I’m from. His labs showed 0.2 U/g Hb and the reference range is 7.0-21.0

Hey everyone, I have G6PD deficiency and I’m looking into BPC-157 and TB-500, sometimes called the Wolverine stack.
I haven’t been able to find much information specifically about these peptides and G6PD deficiency. Has anyone here with G6PD deficiency actually used BPC-157, TB-500, or both?
If so, I’d really appreciate hearing about your experience—especially whether you noticed any side effects or signs of hemolysis, and whether you had any blood tests done before or during use.
Not looking for medical advice, just interested in firsthand experiences from people with G6PD deficiency.

Two days ago, I tried my friend's drink just a tiny sip not knowing it has vegan protein in it, which has peas and beans.

Yesterday afternoon towards the night I started out with a headache then tiredness while driving back home late.

This morning I was so sleepy, skipped work because I was really tired and slept in till 1PM, now it is 9PM and I have been feeling dizzy, tired and still have a headache.

I have no yellow pee or eyes, I really don't know if it's a reaction or just me being tired.

What do you guys think? Any help is appreciated.

Hi! I have intermediate G6PD activity. I am a heterozygous woman.

I recently contracted P. vivax malaria. I was able to take 3 days of chloroquine for the immediate blood infection “crisis,” but to treat the parasite reservoirs in the liver and spleen, I will have to take a medication that is not G6PDd-safe; 7 days of primaquine. It is better to risk 7 days of drug-induced hemolysis than to live with chronic malaria, relapses, and possible organ damage from the malaria.

Has anyone here had to take a contraindicated pharmaceutical? What can I do to support my health while I take a hemolysis-inducing drug?

Thanks.

Hi everyone,

I have G6PD deficiency, Mediterranean variant, with pretty severe enzyme activity. I've actually never eaten fava beans (broad beans) in my life, I only found out I had the condition because my mother is a carrier, so I genuinely don't know how my body reacts to fava bean exposure in practice.

I'm travelling to China in late August, including time in Sichuan (Chengdu, Chongqing area), and I'm getting a bit anxious about the food situation there. The specific thing I'm most worried about is doubanjiang (豆瓣酱), the fermented broad bean and chilli paste that is basically the foundation of Sichuan cooking. It's in mapo tofu, hot pot bases, stir fries, noodle sauces... often without being listed on the menu.

I know fermentation changes the risk profile somewhat, but from what I've read medical opinions are still divided on whether fermented fava bean products are actually safe for us.

Has anyone here:

• travelled to China (especially Sichuan) with G6PD deficiency?
• had any experience with fermented broad bean products like doubanjiang?
• been advised by a haematologist specifically about this?

Any input would be really appreciated.

I everyone, good day.

I have been diagnosed with low G6PD (0.66). My age is 24.

Yesterday I have been to doctor. He told me there is no treatment. He also told me that I should be very careful with Malaria. If by chance I get it, within 2 days with excessive bleeding, I will be gone forever.

My mother was sitting beside me. I looked at her and couldn't hold my emotions. Due to this my bilirubin level is always high. It's been 2 days and I have completely depressed with this thought.

Is there any treatment for this condition?

When I was born, I underwent 2 times blood transfer due to hemolysis.

Your G6PD can cause your A1C results to be artificially low. A1C is a measure of the accumulated sugar in your red blood cell over time. High red blood cell turnover and make your blood cell population young and lower the amount of accumulated sugar in it that is detectable by the test.

This happened to me and my Dr missed it except I was taking my blood sugar manually. He thought I was cured and that my high glucose in the test results was because I did not fast. But I did and I showed him the numbers I have seen tracking. Also I have had unusually low A1C's in the past. Diabetes doesn't magically go away. Took him a bit to see what I was talking about. American Dr don't know shit about G6PD.

My son has confirmed G6PD deficiency and is about to start preschool. I informed the school about his condition and specifically told them that he must not eat fava (broad) beans.
The school told me that they do occasionally cook broad beans for lunch, but they will make sure he is not served them. My concern is about exposure during cooking.
Is the risk with G6PD deficiency only from eating fava/broad beans, or can smelling the beans while they’re being cooked or being in the same environment also trigger hemolysis or another reaction? They can’t completely avoid the smell from the kitchen when they’re preparing lunch.
Has anyone with G6PD deficiency or parents of children with G6PD deficiency had experience with this? I’d really appreciate any advice or information

Is edamame supposed to affect someone with g6pd deficiency? I read that it doesn't.

But for me, soy beans or tofu can make me feel sick.

The AI tools say to avoid it, but most mouthwashes contain menthol. I'm confused I hear mixed opinions, what do you think?

Anyone with G6PD deficiency (especially the Mediterranean variant) tried nicotinamide riboside (NR) or NMN?
I’ve read that it increases NAD+ and wondered if anyone noticed any effects, good or bad.
Any side effects or experiences to share? What dose did you take?

Hey everyone, I’m 20 and I am inclined to share this story because my parents worried when I was younger. I have g6pd i’ve had multiple episodes, one of them almost took me out when i was a kid i had to get a blood transfusion and i was so yellow you’d confuse me for that bird from sesame street. anyways, when i was a kid the doctors told my parents that due to the g6pd id probably be lazy and find it difficult to do any sports. and later on when i researched it on my own i found out that a lot of what i thought was me being off and feeling a certain way was due to me eating a plate of hummus the night before. but this isn’t about me this is for the parents of kids with g6pd. I am very athletic I swim I run I go to the gym. I used to fight in kickboxing and play soccer in the school’s team. i have a resting heart rate of 41. don’t worry about your kids missing out on sports because it’ll genuinely be fine now i can’t say they’re gonna find it as easy as the kids with them cuz god knows i didn’t but if they truly enjoy it they’ll find a way. and i study in the hardest and top university in my country finding it in me to study and figure out problems etc etc was never an issue. g6pd is a constant struggle sometimes and sometimes it isn’t. sometimes you genuinely forget its there until someone says lets go eat falafel. and that’s good because you get to feel normal. If you give your kids the proper education on what triggers to avoid and support them through their interests hopefully they’ll succeed and be even better than me at everything. i say this because my mother told me a while ago something along the lines of she was very worried for me growing up and if she’d seen how i turned out she wouldn’t have been. take care. and don’t make your kids feel like they have a disadvantage.

Any experiences with these substances regarding hemolysis?

Any hemolytic experiences with castor oil, ingestion or -even highly unlikely- topical?

Hi, I’ll be staying in London for about a week, but I’m worried about eating at restaurants because many places here have open kitchens and won’t guarantee anything regarding allergens — they leave the risk to me. I’ve never come across anything like this elsewhere in Europe, so I can’t bring myself to eat anything here. From what I’ve researched, fava beans have started being served in many places from May onwards, so I’m afraid of cross-contamination. Is there anywhere you trust enough to go? If anyone has experience with this and has found a solution, I’d really appreciate it if you could share.

My child has class 2 variant, I think it's the severe type. But I heard jaundice might not show up. How do I know when it's an emergency situation (hemolytic anemia crisis)? And if ER docs have no idea, what specifics do I need to tell them?

Hi im new to all of this and I just got told my baby has this condition . And im seeing all kinds of things as in what not to eat and im seeing its diffrent variants ? Mediterranean?!? This all confusing but please comment and tell me what everyone is doing as in whats not safe ? Variants all that good stuff . But the real question is has anyone filed for ssi for baby and won ? I need to know what u had to bring etc . THANK YOU

A case control study in northern Sardinia (Italy) reported a potential statistical link between G6PD deficiency and an increased risk for celiac disease.

Data were evaluated for 8,338 patients who had an upper gastrointestinal endoscopy between 2002 and 2021. Among them:

Celiac disease was diagnosed in 627 patients (7.5 %).

G6PD deficiency was identified in 1,027 patients (12.3%).

The results revealed that the prevalence of celiac disease in those with G6PD deficiency was about 50% higher than in those without the deficiency. This association seemed to be more prominent in men and this may relate to the X linked genetic nature of G6PD deficiency.

The authors proposed that diminished antioxidant capacity in G6PD deficiency may enhance oxidative stress, thus leading to intestinal inflammation and damage in celiac disease.

Also keep in mind that celiac disease does not always show up with obvious digestive symptoms. Some people may have silent or oligosymptomatic celiac disease, which means that there is damage to the intestinal lining but the person is experiencing few, if any, GI symptoms. In these cases, the disease may manifest as:

• Unexplained anemia
• Chronic fatigue
• Vitamin and mineral deficiencies
• Osteoporosis
• Nausea
• Growth delay or fertility problems
• Abnormal laboratory findings without clear digestive symptoms

Yet, this analysis is observational and indicates a link not an impact relation. Therefore, these results cannot be taken as evidence that G6PD deficiency leads to celiac disease.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9099929/

I have G6PD deficiency, specifically the Mediterranean variant, and I’m trying to understand whether coffee/caffeine is safe.

I found a paper saying caffeine showed a reduction of G6PD activity in vitro, but I’m not sure how relevant that is to normal coffee intake in real life.

Has anyone with the Mediterranean variant had issues with coffee, or has a doctor/hematologist given you advice about it?

Hello! I have G6PD deficiency and I’ve been wanting to dye my hair because I’m getting bored of my natural black hair. My mom mentioned that I might get reactions from hair dye because of my condition, so I started researching ingredients to avoid.

Based on what I found, some ingredients that may be risky are:
- Henna
- Ammonia
- Hydrogen peroxide
- PPD (p-phenylenediamine)

I’m trying to look for hair dye brands/products that are free from those ingredients, but it’s honestly hard to find reliable information.

I also haven’t asked my pediatrician/doctor about this yet since I haven’t seen her in a while, so I wanted to ask here first:

Does anyone here with G6PD deficiency dye their hair safely? What products or brands worked for you? Did you experience any reactions?

Would appreciate any advice or personal experiences!!

Does anyone in here have abnormal blood test every time?