Rapid increase in food intolerances - help much appreciated

[pat]

Hi everyone,

Since my first post a month ago, I’ve had a significant decline in my condition and a lot of things have gotten worse quickly. I’m pretty concerned and would love some guidance for how to move forward. Thanks in advance.

Some context
For the majority of my Saw Palmetto recovery, I was able to eat anything except coffee, pumpkin seeds, mushrooms, alcohol. Big obvious 5ar inhibitors. But about two months ago, I had a 3rd portion of a tomato-based soup and that seemed to have pushed my body beyond some threshold that I had not seen any warnings of. Tomatoes had never shown signs of affecting me before.

Over the past month my body has rapidly started rejecting almost every vegetable, fruit, nuts, bean, grain, and oil. At this point, I can get by okay with eating sardines, salmon eggs, bread, white rice, butter, red meat, and pork. For the past 18 months (and before that) I was wildly healthy - eating all the best things to help my condition. And they helped me boost T and I often felt great bc of them. But now I’m at a complete loss about what to put in my body. I’m so discouraged because I felt really optimistic and was recovering so well before this drop.

Shortly after my “tomato incident”, I ate sorghum pancakes and I had a terrible reaction to them. I wasn’t even eating them for therapeutic reasons…someone offered them to me, I just said “sure”! I had consumed sorghum products fine 3 months prior but this recent bit pushed me into a terrible spot.

So, here is what I’m currently experiencing when I eat most foods. I do feel mostly okay if I haven’t eaten anything in a long time (like in the morning).

-Tingles on my face

-General fatigue/light-headed

-Pressure on back of my head

-Mild burning feeling on skin (like that sunburn feeling people mention)

-Intermittent aches on knees and elbows

-Sharp, shooting pain or dull ache in pelvic and testicular region.

I know these are symptoms a lot of folks experience so I apologize for being redundant and not very original.

My questions

1. Has anyone observed that they can’t eat something and then eventually gain back some level of tolerance. Honestly, I’m afraid of the answers I’ll get but I have to ask.

2. I’m seeing my doctor next week. What kinds of tests and blood work should I be asking them to have done?

3. I’m considering doing some kind of water fast (maybe only 48 hours…I’m pretty skinny as it is) but since I can’t consume any greens without issues, how should I start the refeeding process? I think bone broth is still okay for me.

Anyways, thanks for reading and for your general compassion you show everyone on this forum. Thanks in advance and take care.

[LazarusRy]

The same thing happened to me three years ago. Unfortunately i also get terrible emotional issues and tissue loss. I doubt anything will show up in tests. How are your guts? The bottom line is that you have to avoid all of these foods as sensitivity could become more profound. I re introduced small amounts with time. It makes for a very mundane even nutrition deficient diet but what else can you do. I react to vitamins too. Potato and water are my only friends. I fast one day per week to give my body a rest. No workarounds from me I’m sorry

[finaduta]

Is happening also to me with a lot of foods or meds. I just stick to a 6-7 foods diet in my life and avoid the rest.
Check meats (usually have tolerability) and try complements like potatoes or similar to see how it feels to you.
Is hard to do, but at least i can avoid these “inflammation (?) spikes” that make me suffer for the next days

[pat]

Thanks for you responses @LazarusRy and @finaduta. I’m sorry you’re also both experiencing your individual challenges. I encourage you to just keep going. You’ve obviously proven yourself to be incredibly strong people.

Yea, white potatoes are also a solid food for me at the moment. I’m still very much in the process of trying to learn what my body can tolerate. But jeez, what a mess.

As far as my gut…I guess I’m not sure. A doctor suspected that I was having acid reflux so they put me on omeprazole. I held off on taking it initially but just sort of went for it. I know this has caused some bad stuff for folks here, but I’m 10 days (out of 14) in and it hasn’t done any noticeable damage. It hasn’t really helped either though. I’ve seen people here benefitting from Baking Soda and I wonder if that’s worth trying.

My bowel movements have been totally normal.

One point of optimism is that after my sorghum crash, I became far more impotent than I had ever been. Recently this week though I’ve been experiencing much improved nocturnal erections. I’ll keep an eye on that but hoping for some general signs of recovery in other departments as well.

Thanks again for your thoughts. I’ll be back with updates periodically.

[LazarusRy]

Don’t go near baking soda it nailed a few sufferers and put them into a permanent severe state. Sounds like things are improving so wait it out for at least 3 months. Good luck

[pat]

Thanks @LazarusRy. Best of luck to you as well.

[SkinDiesel]

I’ve had many horrifying experiences with food intolerances in the past; most of my worst times involving PFS have come from them. All I can say is that in my personal experience some intolerances are permanent whereas others have diminished over time.

For example, my intolerances have been so bad at times I have been unable to eat basic things like white rice and chicken, but fortunately these were temporary intolerances that eventually faded. Other foods, such as milk and cheese, are permanently off limits.

The safest thing to do would be to stick to the foods you know you can tolerate for now then in a couple of months try to slowly reintegrate other foods back into your diet and carefully monitor your body’s response. Hope this helps.

[pat]

Thanks @SkinDiesel. Yes, very helpful and very much appreciated. Means a lot.

Take care.

[IrishLegend]

@LazarusRy

Hi there, I bought baking soda yesterday to try out for couple of my symptoms but haven’t taken it yet

Could you elaborate on some of the issues some on here suffered from using baking soda, I cannot find anyone on here talking about their experiences causing negative reactions.

[finaduta]

Reintroducing foods with small amounts day by day has worked to you to overcome tolerance?

[finaduta]

All these things marked in red above, break havoc on me
i develop

hives
palpitations
spasms
anxiety
fever feeling
pains thru the body
cold sweat

And you know what? They are Flavonois, antagonists of the androgen pathway!

[Seneca]

This is exactly what I have been experiencing over the past few weeks. I’m going through a period of worsening and a sharp increase in food intolerances. And by worsening and intolerance I mean an increase in brain fog.

It’s so intriguing that our experiences are remarkably similar. As mentioned here, pretty much the only things I can safely eat are potatoes and meat. I can no longer able to eat bread (wheat or rye), tomatoes, cheese, olives, watermelon, any processed or packaged food etc. without a terrible increase in brain fog. And if I force myself to eat them, it gets even worse. I used to be relatively comfortable with eating many of these. Very few fruits and vegetables appear to be less harmful. I try to include them in my diet to prevent a possible vitamin or mineral deficiency.

At least it was reassuring to see this topic and read about similar experiences. It is also likely to be important to document these peculiar similarities, as they may provide some insight into the pathogenesis of this disease.

As others have mentioned, I also think the only logical way is to avoid the foods that aggravate the symptoms as much as possible.

Anyone unfamiliar with PFS would probably find this phenomenon extremely strange. It is certainly very hard to explain to others. The disease has now made my daily life and social activities much more difficult than ever before. Previously, I had two very short windows of incomplete recovery with better cognitive function than usual. Now there seems to be a reduced capacity to compansate chemical exposures and I can’t really say what might have caused that. After two years, I was hoping for at least some relief from the brain fog. Instead, it has reached an almost unbearable level. The dynamic nature of this disease is quite curious and also very exhausting.

• I’d be grateful if those who have been through a similar period could provide information about their current state and their journey so far. Should I follow a strict diet of only protein and potatoes for a while? Sensitivity seems to be increasing day by day. It’s a really worrying situation.

• It would be interesting to hear your thoughts on whether or not these intolerances could be linked to a more severe form of the disease.

• Also, brain fog seems to manifest very rapidly after eating certain foods. I wonder if this has been the case in your experience? Do you react to them just as quickly?

[Mcbbould]

How would you describe your brain fog?

[LazarusRy]

Hello @Seneca I experienced the same about 6 years ago, started to react to almost everything I ate, white potato seemed to be the only exception. I continued to try to rotate foods but things just got worse. I remember eating a single beetroot, I slept through, woke with a boner and my frame was very muscular, later that day I suffered a crash and had severe suicidal ideation for days. I had the same reaction from a single Brussel sprout… During this time I suffered numerous crashes and ended up fearing everything. I used to have a glass of carrot juice daily, out of nowhere I suffered very severe anxiety attack with a tingling face. I removed the worst offenders from my diet. I introduced fasting, for a few months I ate white potato only but unfortunately started getting severe bone pain. The good news I revisited some of the foods once more after a few years to find I could tolerate them again. I think abstaining, for a lengthy period fasting, then gradually re introducing them is what worked for me. I certainly don’t have the extreme level of a fallout I was experiencing a few years ago. Same with caffeine, i can now drink coffee without issue. I avoid sugar and processed shit. I also eat quite a lot of beans now for the butyrate deficiency. A few years ago I reacted badly to them. I hope this helps in someway.
Regards

[joetz]

Does it seem like the food allergies came late into pfs? I’m thinking about my own situation and I only started having all these food allergies at about my tenth year of PFS. Not sure if others have had the same experience, or what it means in terms of how recovery (if there is a recovery) progresses

[Seneca]

That’s a fair question. I’m suffering from “head pressures”. I’m not sure how to accurately portray it. It is quite different from a tension headache, it feels like something that comes from deeper. But there are definitely cognitive difficulties associated with it. I have trouble thinking quickly and remembering things. There is a frustrating loss of mental acuity. When it reaches its peak, I can no longer read and have to wait for a while. It gets worse with cognitive effort. So by “brain fog” I meant both the head pressure and the cognitive symptoms I mentioned. Thank you for asking.

I wish there was a medical diagnosis with a clear description for these neurological symptoms. In my opinion, the lack of appropriate terminology creates a stigma.

[Seneca]

Hi @LazarusRy. Thank you so much for sharing. It means a lot. I’m sorry you had to go through that. But I’m very pleased to hear that you’re doing much better. “A few years” sounds a bit daunting but I’ll try to do what you’ve done.

[Mcbbould]

Yes for me my brainfog is a combination of head pressure (like sinus pressure), lightheadedness, visual trouble, and this extremely weird feeling like my brain is chemically burned - hard to explain but this happens when I read or concentrate too hard

[boulder88]

Hey Seneca - this happens to me as well. Brain fog, extreme fatigue, and head/ear pressure. Those symptoms are usually always there to a degree, but when I eat (anything), it massively triggers the symptoms. Have you found anything that helps?