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2

MissingOly t1_j8ex83f wrote

Do alcohol based wipes have the same effect?

13

ylmvrg t1_j8exgv2 wrote

What do you do when it rains ?

8

nephilim80 t1_j8ext8u wrote

It's confusing. You can wash your hands, that doesn't trigger the allergy, but water on your back and chest trigger it. Sounds fun. Can you wash your feet?

6

AlternativeSign272 OP t1_j8extew wrote

Replying to STA_Alexfree (#1,800,131)

Shower and suffer. I don’t trade in hygiene for comfort. I try to shower every other day though, to avoid bad reactions, but in the summer it’s every day. Washing my hair adds time to showers and the dripping afterwards adds time to drying off, so I try to only wash my hair two times a week (luckily my hair is naturally not super oily.)

55

Kehlii t1_j8eye2g wrote

Do you know why your body reacts that way?

I have the same condition and have always blamed some mental factors for it. But i am not 100% sure.

I was in the hospital once to get me checked after i got diagnosed and they invited the whole station to take a look at me because this is such a rare condition. I felt like a zoo animal. Did anything like this ever happen to you?

27

NNovis t1_j8eyeky wrote

Does humidity factor into things at all? Do you have to use a dehumidifier in your room during wet summers?

7

Aw_Frig t1_j8eyhdr wrote

What causes the reaction? Like what is the official process behind it?

4

AlternativeSign272 OP t1_j8eyirh wrote

Replying to Spaceman1260 (#1,800,165)

Hmmm, good question. I remember when I was 9 or 10 complaining about being itchy after swimming in the ocean, but at that point we thought it was a hormonal/puberty thing (as my mom had a short phase of that type of thing around that age) and we didn’t go to a doctor until I was around 12-13 and I walked out of the shower one day and realized I was covered in red splotches and hives. Then, after a few different dermatology/allergist visits, I was formally diagnosed.

21

GentG t1_j8eyswf wrote

Is it something which is expected to get better, worse, or stay the same as you get older? Is it only pure water which causes this or is it everything, e.g would milk be different as it contains some fats and proteins?

6

Chyvalri t1_j8ez40f wrote

Can you take an antihistamine to help with the symptoms?

6

McDylanM06 t1_j8ez3z0 wrote

How long do the hives last? How painful are they and how are u dealing with being allergic to water like what is the biggest impact it has on your life?

4

AlternativeSign272 OP t1_j8ez4h6 wrote

Replying to Kehlii (#1,800,185)

Many times!! I am the queen of “I’ve never seen this before” due to multiple rare conditions (such as a pre-cancerous subungual melanoma on my middle finger, which is typically found in black men, 50+, on a thumb or big toe) but diagnosing was tough. I had to sit for around an hour at Children’s Hospital telling them that “no, temperature does not change it. no, it’s not chlorine” because it’s so rare that they thought it was everything else!

43

zulured t1_j8ez4y0 wrote

How can you be allergic to something you're made 80% of?

18

Theheadbanger47 t1_j8ez8kb wrote

Have you tried anti-histamines (like Zyrtec) before showering to see if that helps? One of the theories involves histamine release

1

Xiniov t1_j8ezkcn wrote

Is there anyway you can build a tolerance through immunotherapy?

36

AlternativeSign272 OP t1_j8ezz4u wrote

Replying to Theheadbanger47 (#1,800,247)

I did try Zyrtec, and famotodine, and Allegra. We were seeing progress, until we didn’t anymore and it started going back to how it was, so I decided to just face the reaction. I have heard there’s some form of shot, I think my mom is looking into that.

2

Rawlo93 t1_j8f07pg wrote

Do you have a label that says "dry clean only"?

168

AlternativeSign272 OP t1_j8f0cl0 wrote

Replying to GentG (#1,800,218)

Hmm, I don’t know. I haven’t noticed any changes other than while on meds. I am part of a few Facebook groups with people of all ages having it, though. And I’m not sure about the milk thing.

5

SpudTrash t1_j8f0dws wrote

Are you allergic to lotions and products that contain water? Can you eat watermelon? Are you allergic to other people's sweat?

1

AlternativeSign272 OP t1_j8f0k3z wrote

Replying to McDylanM06 (#1,800,238)

I used to LOVE to swim! Now it hurts, which sucks. The pain level fluctuates, sometimes it’s quite bad, other times there’s no pain at all, just some red spots and non-it by hives. It’s wack. Sometimes they last 40 minutes, sometimes 5.

3

Rock3tPunch t1_j8f0lq5 wrote

Is it just a skin condition or you have problems consuming water?

Are there any medications you need to take?

1

MusaEnimScale t1_j8f112k wrote

Have you ever looked at toxic mold as a root cause? Your condition is not common, but for the people that have it, mold/mycotoxin exposure is one of the most common causes. Neil Nathan, MD, discusses your condition in his book Toxic.

9

nutano t1_j8f1195 wrote

Are there any anti-histamines you can take on the regular that would limit the hives\effects?

My wife is allergic to dust and animal dander as well as a multitude number of pollens. She pretty much takes an aerius pill every day in order to at least minimize the effects. If she forgets for a day or two her reactions come back hard.

Do you have any other allergies?

1

fushifush t1_j8f162b wrote

What about water consumption? Where does the allergy start and stop?

8

Micksar t1_j8f1a6r wrote

Were you affected at all in utero? I feel like the amniotic fluid would have been an issue. Or was this something that started later on in life?

2

Raspberries-Are-Evil t1_j8f1g7c wrote

Is it all water or something in YOUR water?

Does distilled water cause this as an example?

20

MusaEnimScale t1_j8f1hnp wrote

Replying to AlternativeSign272 (#1,800,406)

That’s good! But it can be school exposure, or hidden, or a really bad exposure in the past that your body didn’t recover completely from. Definitely check out Dr Nathan’s book since so few doctors have experience with this.

5

FerretFarm t1_j8f1kqt wrote

Replying to AlternativeSign272 (#1,800,304)

Hey, no question from me. I have a similar issue though. Delayed Pressure Urticaria. I'd get hives from imperceptible pressure from things like a belt or shoelaces that were a little too tight. The hives would show up a few hours later, and usually last 24 hours or so. Longer if I scratched them, and boy were they hot and itchy!

I've had it for +/- 20 years, but the good news is that for the last 12 or so I've had no hives because my doc and I finally found a drug combo that got rid of them.

I take 5mg of Montelukast, and 5mg of Cetirizine every night before bed. I also have a few Prednisone pills on standby in cast there's a sudden breakout, but haven't needed them for +/- 10 years. One is for allergies, the other is an asthma med. And the prednisone is for killing the hives quick so your body resets, and the other drugs will work.

I obviously don't know if that will work for you, but the combo might be worth mentioning to your doc. I just hope you find a solution.

The big bonus for me, is that since I'm on these pills I never have to worry about my hay fever or cat allergies! :)

56

MakesMyHeadHurt t1_j8f1n9n wrote

Just plain water, or anything with water in it? Like if you dripped some soup on your arm, does it react? Or if you licked said soup off your arm, does it react to the saliva?

1

technicolored_dreams t1_j8f1ntw wrote

Have they tried managing the symptoms with an antihistamine? If so, does that give you any relief at all? Any chance that you might outgrow it or that hormonal birth control could change it?

1

kingrooted t1_j8f1o96 wrote

What percentage of water does a fluid need to be for you to have a reaction? For example if you bathed in milk would you have a reaction?

1

Emeryb999 t1_j8f1thh wrote

Replying to zulured (#1,800,241)

The first conceptual leap is that it seems to be specifically the skin having a reaction to water and not an ingestion intolerance. It still seems wrong because your cells contain water, but the outermost layer of skin is very different from a traditional live cell.

Just some thoughts from a trained biologist who also had the exact same first reaction lol.

20

FelineOverlord t1_j8f21uf wrote

Does temperature have any effect on the severity? Maybe colder showers lead to fewer hives, and you could get used to them.

1

sztrzask t1_j8f26vq wrote

Have you tried any alternative medicine therapies in addition to your current medications? If yes then which ones?

1

russellvt t1_j8f296h wrote

Replying to AlternativeSign272 (#1,800,193)

> Then, after a few different dermatology/allergist visits, I was formally diagnosed.

No offense, but considering how ridiculously rare this disorder is (like 50 to 100) documented cases... "a few' visits would seem low (ie. Took me "a few" just for a regular allergy panel with treatment, etc)

5

RedditAtWorkIsBad t1_j8f2eb3 wrote

Replying to NNovis (#1,800,187)

This is an excellent question. H20 molecules are incident upon her 24/7, and even in low RH, there is always some condensation that occurs, but if RH < 100% then the rate of condensation < rate of evaporation.

It would totally make sense for some sort of reaction to occur in high RH conditions, where the rate of condensation approaches evaporation.

3

Sunshine__Weirdo t1_j8f2f3u wrote

I have the same condition since i hit puberty. For me it is a autoimmune disease that was triggered by puberty hormones.

I take Rupatadine Pills, so nowadays i hardly notice it anymore. Its specially for chronical urticaria. Maybe you could try it?

1

J_MareQ t1_j8f2gcl wrote

Is the water reaction same as if you ate something you were allergic to? Does taking antihistaminic meds possibly help or lessen the reaction? Or does any medication help or prevent a reaction or possibly speed up the healing process? I'm also wondering is it the H2O You're allergic to or the minerals that are dissolved in water?

1

CaravelClerihew t1_j8f2ga7 wrote

Does increased humidity (like going somewhere tropical or just the micro-environment around your face when your wear a face mask) trigger it?

1

big-chungus-amongus t1_j8f2kx5 wrote

Does that make you afraid of water? Or do you accept your fate and go for bath (just like my lactose intolerant friends accept their fate and drink milk)

Have you tried alcohol based wipes?

Have you tried distilled/deminarized water?

Ps: finally found someone who has more strange allergy than me.. I'm allergic to certain light in UV spectrum

That means allergic reaction within minutes of exposure to sun or within hours under certain types of lights

1

kanyetookmymoney t1_j8f2m05 wrote

You mentioned that you have other rare diseases. Did you ever did a dna test like myheritage or 23andme? I case you did, you can download your raw dna data, reupload it to promethease and get it analysed for free. You might get some interesting insights :) best of luck to you!

1

Emeryb999 t1_j8f2mpg wrote

Do you think you would ever get a tattoo? Would that cause a problem?

1

Bagelstein t1_j8f2qtt wrote

What about completely purified water, like reverse osmosis, distilled, etc? Is it really the water or is it certain minerals/contaminants in the water?

1

dani8hydra t1_j8f2ulz wrote

Have you noticed a difference between different types of water? Like salt water vs. regular water vs. purified etc

1

devil-xx t1_j8f34lx wrote

If you're allergic to water then how do you keep yourself externally hydrated ? Doesn't it causes any kinda of severe infection or How do you deal with it ?

1

Searlichek t1_j8f3azl wrote

Did you have a good weekend? I hope you did :)

0

zaphrous t1_j8f3kam wrote

Do you know of it's related to temperature? Or content of water? I.e. saline might be better since it's more similar to natural osmolarity. Or of it's due to fluoride or chlorine in water. Maybe could be metal like lead or copper if highly sensitive.

1

IAmA-ModTeam t1_j8f3w11 wrote

There is not enough proof included in the post that connects your identity to the IAmA.

Unfortunately, the links or photos you've posted could have been posted by anyone, and they don't prove that you are the person doing the AMA. Your proof needs to be something that connects the fact that you're doing an AMA with your identity. This could be something like a photo of you in a work uniform or at a relevant location with a sign that has your username and the date. It could also be documents (partially redacted if desired) with a note that has your username and the date. We're happy for you to get creative with your proof as long as it makes it clear to a reasonable person that the person doing the AMA does meet the criteria laid out in the topic of the AMA.

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Here's a link to the section of our wiki that discusses proof.

Please edit your post and add new proof, and reply here to let us know. If your post is more than a couple of hours old, it may be more effective to create a new post and include the proof from the start. Thanks!

1

rhubes t1_j8f4qyq wrote

Replying to russellvt (#1,800,433)

What's really crazy is there have been multiple amas by Reddit users that have that.

https://www.reddit.com/r/casualiama/comments/dzkvyg/i_am_a_person_whos_allergic_to_water_ama/

https://www.reddit.com/r/AMA/comments/wlzc1/i_have_aquagenic_pruritis_which_means_im_allergic/

https://www.reddit.com/r/AMA/comments/e2hrth/i_am_allergic_to_water_aquagenic_urticaria_ama/

https://www.reddit.com/r/AMA/comments/nrdwuo/i_am_allergic_to_water_ama/

https://www.reddit.com/r/IAmA/comments/n426s/iama_a_person_that_gets_an_irritating_and/

6

Njordfinn t1_j8f4x9g wrote

Did you ever get your DNA sequences to see if anything pops up as a reason there?

1

nycpunkfukka t1_j8f58uf wrote

Replying to Kehlii (#1,800,185)

I got this treatment when they placed an aortic balloon pump to prevent me from going into cardiac arrest before heart surgery. It’s apparently so rarely used and only on such severe cases that EVERY cardiologist and surgeon in the very large NYC hospital visited my room that night. The fun part is it’s inserted in the femoral artery in the groin and fished up to the heart, so these total strangers would stare at my chart then lift my blanket and move my genitals aside to take a peek. Such fun.

1

2wedcvtg t1_j8f5j37 wrote

Replying to Emeryb999 (#1,800,461)

this is what I suspect as well. I have this sort of allergy with cannabis. Ingesting it is fine, just don't let my skin come in contact with the flower because it will itch like a bitch

3

msnmck t1_j8f5wzi wrote

Replying to technicolored_dreams (#1,800,475)

There is a chance that famotidine could be prescribed with other medications that can cause in increase in stomach acid production. I take an allergy pill and aspirin to help with my sinus pain and I sometimes need an antacid afterwards.

2

honkaponka t1_j8f66bs wrote

This might sound strange but what happens if you pee on yourself? Would you be willing to pee down one leg and pour water down the other?
(I am guessing it might cause an unusually bad reaction since it is another way to get rid of contaminants and I would suggest the immune reaction happens as a result of some contaminant, that is produced by your body, when it reacts with water, rather than a reaction against the water.
If the reaction is the same level I would be inclined to think that the disturbance is caused in your skin. If no reaction I would be confused :)

Would you be willing to try a sauna or steam bath just to see what happens? (Probably a bad idea)

Have you tried rubbing a wet skin area on someone else to see if they also exhibit a reaction?

Have you addressed or found a cause for the skin itches you mention?
(I can have something similar sometimes - very dry feelingskin with a firey/scorching itchy feeling, mostly on my arms.)

Do you use/been prescribed any skin creams and do they reduce the rashes?
(I had a "skin allergy" on my legs that became a lot better after using a fat skin cream for a while, even if I still tend to get rashes when exposed to the sun)

You mentioned a "lottery". Do you keep a diary? ie, of what/how much/often you eat, if you expose yourself to sunshine, exercise and the severity of any rashes.

What does your blood works say? Any tendencies towards lowish or highish values within the "normal" ranges?

Have you tried supplementing things like Zink? Tried fasting or low-carb / keto diet (several conditions depend on high-carb diets)?

Any other weird/unaccounted for symptoms?

Thanks for settling my curiosity.

2

nicgom t1_j8f873s wrote

I know the people in the ISS do some Form of dry showers, is something similar available to you?

1

AlternativeSign272 OP t1_j8fbcia wrote

Edited with a second photo of me, proving that the first one is me.. hopefully this counts.

1

Kehlii t1_j8fbk13 wrote

Replying to AlternativeSign272 (#1,800,240)

I know exactly what you mean, having to tell everyone that you have ruled out shampoo and temperature and everything else is so annoying, especially if you visit multiple doctors for it.

Two more questions if you want:

Did you try any treatments or did you just accept it? Do you react to your own sweat?

1

AlternativeSign272 OP t1_j8fcjy2 wrote

Replying to russellvt (#1,800,433)

Doctors told me I was the 51st documented in the US. They also suspect that there may be more that just don’t know, or may be less that have been misdiagnosed (i.e. like it’s actually temperature urticaria)

0

AlternativeSign272 OP t1_j8fcwwx wrote

Replying to russellvt (#1,800,490)

I went to my local derm, who then referred me to Children’s in Boston. I went there, was formally diagnosed and prescribed over-the-counter antihistamines. Those didn’t work, so I went back! They said, basically, “we don’t know what to do, we’ve never seen this before, if you’re okay with the reactions then just leave it be, watch for trials and new treatments.” (Something along those lines.)

1

AlternativeSign272 OP t1_j8fd31q wrote

Replying to fushifush (#1,800,405)

I can drink it, although I did just read the other Aquagenic AMA from 13yrs ago, and they said their lips got dry. I do tend to have dry lips, so now I’m wondering if that’s got something to do with it.

1

AlternativeSign272 OP t1_j8fecp1 wrote

Replying to J_MareQ (#1,800,501)

I don’t have any food allergies, so I’m not sure on that. Antihistamines didn’t work, but we’re looking into different things. I think it may be the H2O, because all different types of water trigger it.

1

AlternativeSign272 OP t1_j8fewg1 wrote

Replying to big-chungus-amongus (#1,800,510)

Not “afraid” per say, but wary. I accept my fate and shower, then suffer for a little while lol. I haven’t tried alcohol wipes, except for at the doctors (I think my skin went a little pink, but could be skin sensitivity) I have tried distilled, all types of water affect me. Also, I’m so sorry to hear about your allergy!! That doesn’t sound fun.

1

AlternativeSign272 OP t1_j8ffzla wrote

Replying to honkaponka (#1,800,756)

Woah, this is a lot. Let me break it down lol.

Pee - I haven’t noticed any extreme reactions, then again I haven’t investigated in any form of detail.

Sauna - I have done this. It’s not fun. Causes me to sweat, and then I get super itchy.

Wet Skin - Yes, actually! My mom had me try that on both her and my dad. They didn’t get any reactions.

Cause - No clue.

Creams - Haven’t been prescribed any, but we but hydrocortisone on hives.

Diary - I did, for awhile. Specifically for this lol. We didn’t find any patterns.

Bloodwork - had it done lots of times, always been normal.

Supplements - I have not tried diets.

No problem, let me know if you have more questions!

1

Kehlii t1_j8fgt1u wrote

Replying to AlternativeSign272 (#1,801,099)

It is very interesting to hear from someone with the same condition.

Besides various other things I tried a therapy where they drew some blood and immediately injected it back, so my body "would learn not to react to itself". It did not help however.

It started when i was like 13. But it also started to get lesser and lesser when i turned 20, i think. I am 27 now and it rarely flames up anymore, i really hope it works out for you and will subside with time!

1

StrictSorbet9799 t1_j8gfmbs wrote

How does brushing your teeth affect you? Does it chap your lips?

1

D3f4lt_player t1_j8j0b1u wrote

have you tried heavy water (D2O)? it's expensive as fuck and impractical but it would be interesting to see the results

1