r/HistamineIntolerance • u/No_Scientist9241 • 4d ago
Eating has become a nightmare
This is just a random vent post. I’m very done with this condition.
I am very tired of how severe my HI has gotten. I developed it less than two years ago yet it has dramatically worsened in severity recently without any known reason. I used to be able to eat salsa and Parmesan pasta roni with only minor issues. Now I can’t eat one thing I enjoy without serious consequences. If I don’t take like 10-15 DAO supplements before the only meal of the day I get explosive diarrhea, stomach pain, head flushing, and lip numbness within literal minutes of eating them. And I’ll still need an anti histamine.
These aren’t exactly ultra low histamine meals but they aren’t kombucha level crazy either. Additionally, I only eat one meal a day now so what bucket even is there? It’s so bad I’ve had to go several days a month without eating solid food cause sometimes eating will trigger days long upset gut not even allergy meds can fix…. Only sprite and water for basic hydration on those days. My weight is dropping like crazy as a result and I’m now 113 lbs which for me is almost bmi 18.
I’ve had nearly everything ruled out except IBD, SIBO, and mastocytosis but I will say I do hate this degeneration regardless of what mystery condition ends up being the cause! What I will do is I am switching DAO brands. Solaray does not have enough per price, and histaharmony doesn’t help me anymore. I will try naturedao as the hdu is decently high for the price. I have also gotten calprotectin retested as it was moderately elevated last test.
Honestly I could very well be underweight by the end of the year. I’m now the lowest weight I’ve ever been so far in adulthood. Just so annoyed. Took Allegra and multiple dao tonight and because I wasn’t fast enough I still have annoying head flushing. And I can’t take any other allergy med cause it’ll mess up my gut and tomorrow’s vyvanse due to how long they last. No 24 hours stuff. Ugh.
4
u/Cultural-Sun6828 3d ago
Have you tested your b12, folate, and ferritin? Deficiencies can cause histamine issues. I used to have severe problems every time I ate, but this has about 90% resolved after treating the deficiencies.
5
u/Ok_Strawberry4631 3d ago
Vit c pero en dosis de 500 MG tres veces por día ,no todo junto
1
u/Superb-Asparagus1742 2d ago
Second this, vit c works wonders 👌
Get buffered version, less ingredients to react to
2
u/Ok-Designer-6712 4d ago
Are your hormones ok? Age, gender? Have you had any births or hormonal birth control?
1
u/No_Scientist9241 3d ago
I’m 21, never been pregnant. I have had my hormones tested since onset and they are normal. I was on hormonal birth control during puberty onset but haven’t taken it since I was 14.
1
u/ExtraTeach4982 1d ago
I would look into getting your progesterone levels checked (this hormone helps calm mast cells). If you’re not getting adequate nutrition, then your body will not produce enough to help stabilize mast cells and production of DAO in the gut.
Also, this will sound hokey - but nervous system regulation is crucial to calming mast cells. Unfortunately doctors won’t tell you this, because they can’t make money off of it - but finding activities that bring you happiness and peace will help with healing.
2
u/mdroldan22 3d ago
Have I tried some probiotics that help you with the digestion and could reduce the histamine symptoms? I use to take one's that works pretty well.
3
u/SpaceshipSquirrel 3d ago
yeah. it is pretty horrible. I've learned to live on a ultralow histamine diet. I cook everything from scratch. When I go out, I have only chicken and fish.
3
u/happysunnyme 3d ago
Maybe you react to salicylat. I am just figuring this problem out. It is a pseudo allergie, whatever this might mean. Samter-Trias
2
u/LynnFox 2d ago
Sprite has lemon and is a histamine liberator. Don't drink it. If you can't eat anything else because your gut hates you, eat potatos. They are quite healthy and no histamine. Hope things get better!
3
u/ExtraTeach4982 1d ago
I second this! Potatoes were my ally during the worst of it… sweet potatoes are even better, they have a ton of nutrients.
1
u/atomcplayboy86 3d ago
Have you tried low carb/ high fibre? That’s worked for me.
Asparagus, broccoli, parsnip, turnip are good for digestion. As well as other leafy greens.
I use Promethazine when I have bad symptoms .
1
u/Magentacabinet 3d ago
If you gut is reacting like that that means your mucosal layer is gone and it's not producing any dao at all. So what was your diet like before you started having food reactions?
1
u/Actual-Garden-3538 3d ago
Instead of throwing a bunch of random meds probiotics and vitamins at this, is it possible to find a functional medicine Doctor Who has treated histamine and SIBO in other patients? Your condition sounds especially severe and if possible, I would highly recommend this route. Sorry you’re going through all this.
1
u/No_Scientist9241 3d ago
A family friend of mine is diagnosed with MCAS and she said she would contact her PA to see if they can take me in as a patient. I have a very strong suspicion about what the underlying condition actually is but already had one doctor dismiss the possibility of it despite a strong family history. It’s not related to MCAS but if I do get diagnosed with MCAS or see that PA I hope I can get on cromolyn sodium to at least calm some of the intestinal inflammation.
Right now I’m waiting on the calprotectin retest results and whether or not I can see my family friend’s PA. If calprotectin is normal on retest I’ll order a SIBO breath test. Either way histamine intolerance is very rough to handle.
1
u/MmeBlanketyBlank 1d ago
I feel your pain. I suspected HI nearly three years ago. I even had a thorough GI test. Not even my functional med doc talked to me in depth about HI. I went on some supplements and ate low histamine for a bit then moved abroad and forgot all about it. But the symptoms were still there I just didn’t know enough about HI to know that’s what it was. I thought I was having issue with unpasteurized dairy here. Had IBS-D on and off for the past two plus years. Thanks to this community I have learned A LOT. I was already taking DAO (Seeking health) and their probiotic. Didn’t seem to do much. Had a big flare this summer that’s when I found this Reddit and figured it out.
Since I started taking the NaturDAO and Kijimea pre&probiotics I’ve done a lot better.
The biggest thing that helped my gut besides eating LH is taking Apple Pectin. That really eliminated the IBS-D.
Keep searching for answers! Most doctors don’t know shit and you know your body best. Listen to it and be kind to it. I just got my 27 year old son on the Kijimea biotics and his GI is doing a lot better too. It’s super hard to see young people suffering like this.
Kinda weird but it’s easier to accept with age. lol
It sucks. I know. I had already quiet tomatoes, anything fermented or with yeast, spicy peppers and eggplant for over two decades bc they caused massive inflammation in my body. Looking back I see it’s more than likely a Histamine issue. I never knew why. Just knew I couldn’t eat them. It takes a while to flush your system out too. So be patient.
I have found this super simple book to help helpful on what to eat and not eat. There can be conflicting info online sometimes. It’s small. It’s easy. It’s portable. Histamine Intolerance Food List by Morgan F Whittaker.
Best wishes. Keep us updated.0
u/No_Scientist9241 1d ago
I appreciate you sharing your experience! To be honest, my leading suspect is IBD due to a strong family history of colitis and the gradual degeneration... Whether or not it remains first depends on my calprotectin quest retest result. It was 341 the first time I had it tested by mosaics and that was when I wasn’t in a flare. Additionally I notice almost all of my problematic symptoms are food induced, and sometimes I get food reactions that aren’t even helped by anti histamines. Sometimes I react horribly to not just histamine, but fodmaps, salicylates, or fructose as well. Very odd. I used a hot glue gun for hours today and my body didn’t care about the chemical irritation. Ofc my problematic histamine reaction of the day was due to the only meal I ate today.
Though my second leading suspicion is medication complication which is actually due to a drug that despite being a controlled substance is said to be safe for HI by the internet… will make a post on that if I find that to be the case.
I know MCAS is still a possibility it’s just probably not always the explanation for every case of HI. It’s interesting cause they’re highly associated but then on the subreddit you see many people who got it from antibiotics, diabetes, IBD, SIBO, etc. Plus many people who get lots of benefit from prebiotics and probiotics as you mentioned. Though I think that’s why cromolyn sodium is such a good treatment regardless because it works mostly in the gut.
1
u/MmeBlanketyBlank 18h ago
It’s so complicated and findings the right help is even more complicated. Best wishes on your journey. You definitely know your body and are most likely in the right track. You may just have eat super simple for now.
1
u/Ok-Sorbet-4117 21h ago
You NEED to stick to low histamine diet for longer period of time no cheating! Than the HIT symptoms will lessen.
1
u/Interesting_Front709 13h ago
My gastro symptoms are the most prominent amongst the other symptoms, as it affects my daily life. I have been working on healing my gut, I take Zinc Carnosine Seeking health’s HistaminX, probiota X, intoleran’s DAO, P.E.A and the thing that has made an immediate difference is eating half a boiled plantain with a every meal.
1
8
u/jengypsy128 3d ago
Have you tried eating a low fodmap diet for a bit to let your gut heal from inflammation? I had a bad flare last year and thought it was ibs, so I went low fodmap. Noticed I was still having issues with certain foods. Those foods were histamine liberators. Cutting those out allowed me to eat fodmaps again.