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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
Look at this list:Open Original Shared Link

I guess there is just some descrepency with a few fruits...

Yeah...I dont agree with the list of fruits. I'm going with what I've read on all the other sites and from my own experience. For example, every site I've ever seen lists bananas as being high in histamines....except this one. The highlighted ones are the ones I would move over to the bad list...some I will put ??'s cuz I'm just not sure.

Apple

Banana

Cantaloupe (rock melon) <---doesnt work for me....could be Auxigro or mold factors though

Figs

Grapefruit

Grapes

Honeydew ??

Kiwi

Lemon

Lime

Mango

Pear

Rhubarb??

Watermelon ??

In my opinion the highlighted ones should not be on the safe list. Its possible some citrus...like lime...might be ok in small amounts but in the beginning I would think it would work best to not have any citrus fruits.

What do you think? How are you with these fruits?


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Carriefaith Enthusiast
Carrie,

You can get histamine reactions to any allergen or irritant. Anything the immune system sees as "foreign" or "bad" can trigger a release of histmaine.

OOOPS...

This is a duplicate post.....please see above post. :lol: laugh.gif

BTW...I love your new avatar! biggrin.gif

Did you have your wedding yet?

Thanks for your help. I'm getting married on August 19!

Fiddle-Faddle Community Regular

Pant! Pant! (I'm out of breath from frantically trying to keep up with this thread! )

Vincent, I get silent migraines that are very similar to what you describe. I get what they call an aura (which is a visual distrbance, even though it sounds like I ought to be glowing)--everything looks more or less normal except for the millions of tiny black dots. Focusing on anything (like reading) is impossible. If I go lie down in a dark room, I can avoid the nausea, but if I can't, then nausea hits, and after a few hours, a headache somewhere near my eyes.

Ibuprofen works really well for me, especially if I can take it within the first 10 or 20 minutes. It's the one time I resort to supporting the pharmaceutical industry and take meds, but since ibuprofen works so well, I refuse to try anything else.

For me, stress and hormones definitely play a role, but for you--???? I've also read that caffeine can bring on an attack, but conversely, they say to take the ibuprofen with a tiny amount of caffeine (say, a handful of dark chocolate chips), as that helps unconstrict the blood vessels.

I wonder if the fact that any over-the-counter medicine has such a wallop on my system is related to the gluten/celiac thing (back to Rachel's histamine theory!). I always thought it was just me being weird and square-peggish, but you guys are starting to give me the idea that it's not just me!

Thanks for your help. I'm getting married on August 19!

Congratulations! Hey, you could start a whole new thread here--you could post a vidoeo of your wedding! :)

(Sorry, I don't get out much... :blink: )

Green12 Enthusiast
Apple

Banana

Cantaloupe (rock melon) <---doesnt work for me....could be Auxigro or mold factors though

Figs

Grapefruit

Grapes

Honeydew ??

Kiwi

Lemon

Lime

Mango

Pear

Rhubarb??

Watermelon ??

In my opinion the highlighted ones should not be on the safe list. Its possible some citrus...like lime...might be ok in small amounts but in the beginning I would think it would work best to not have any citrus fruits.

What do you think? How are you with these fruits?

I don't have an obvious reaction to any of these fruits, kiwi, peaches, nectarines, even pineapple.

But grapes, red grapes, I don't think I can do those, they made my angioedema worse.

Of course, with me I have delayed reactions so I am not really a good barometer for what is/what isn't working for me reaction wise.

The link I posted before, the one you couldn't find the diet, have you been able to look at it yet, you won't believe the fruits and vegetables he's eating. And he says it is a specially designed low-histimine diet....if you want to try it again and click on the little picture at the bottom of the page (looks like a fork with a piece of chicken or something on it)

Open Original Shared Link

This is why I am confused a little. I want to get the diet right, since I don't have obvious/immediate reactions it makes it harder for me to know if I am going in the right direction. I will only know by the severity of my angioedema outbreaks if I am on to something.

Fiddle-Faddle Community Regular
Yeah...I dont agree with the list of fruits. I'm going with what I've read on all the other sites and from my own experience. For example, every site I've ever seen lists bananas as being high in histamines....except this one. The highlighted ones are the ones I would move over to the bad list...some I will put ??'s cuz I'm just not sure.

Apple

Banana

Cantaloupe (rock melon) <---doesnt work for me....could be Auxigro or mold factors though

Figs

Grapefruit

Grapes

Honeydew ??

Kiwi

Lemon

Lime

Mango

Pear

Rhubarb??

Watermelon ??

In my opinion the highlighted ones should not be on the safe list. Its possible some citrus...like lime...might be ok in small amounts but in the beginning I would think it would work best to not have any citrus fruits.

What do you think? How are you with these fruits?

For some reason, bananas have always given me reflux, which makes no sense to me as I can't think of anything blander than a banana. :blink: (The GI doc thought I was mental when I told her that.)Could that be a histamine response? As far as I know that's the only fruit that I react to.

Green12 Enthusiast
Ibuprofen works really well for me, especially if I can take it within the first 10 or 20 minutes. It's the one time I resort to supporting the pharmaceutical industry and take meds, but since ibuprofen works so well, I refuse to try anything else.

Be careful with ibuprofen, especially if leaky gut is already present

and I will leave it at that .....

Fiddle-Faddle Community Regular
Okay... question.... I've been going back and forth and also reading the A Must Read thread... from what I gather... and believe me I'm trying my hardest to understand all points of view.... that inflammation and histamine are too different things.... I don't get it... :blink: doesn't one cause the other to happen? :huh:

Can you have inflammation without histamine? Do we produce histamine when we sprain an ankle and it swells? Or is there a different mechanism? I'd ask my husband, he's a chemist, but he's snoring right now...


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Fiddle-Faddle Community Regular
Be careful with ibuprofen, especially if leaky gut is already present

and I will leave it at that .....

No!!!Don't leave it at that!! Tell me more!

Camille'sBigSister Newbie
EDIT:

I guess I've had 7 pints now. Its been like 5 days I think. Someone told me if you wanna gain weight...ice cream is the best way to do it. I'm trying...but theres no big difference yet. Guess I'll just have to work harder at this. :D

Rachel, eating a huge bowl of ice cream every night was how I kept from losing weight for years. Then "d" struck, and I eliminated ice cream, thinking I'd become lactose intolerant. (Oh, how I mourned!) :(:(:(

Thanks to your string, a couple of weeks ago I was struck by an omg relevation! It wasn't the lactose; it was the other stuff in the ice cream. I'm happily back to my evening fix, and I swear I'm gaining weight. :):):)

Rinne, I didn't realize I was speaking to an expert. I feel a bit foolish, preaching to the "Amen corner!" Habit, I guess. In my circle I was so alone for so long. :( I got looks like, "What the hell is she talking about?" :unsure: and, "Oh, Cissie's on a soapbox again. Let's just indulge her, wink, wink." ;)

Gonna turn in and get a good night's sleep. Pleasant dreams, everyone. I love you.

Cissie

penguin Community Regular

Sorry, I had 10 pages to read and they all ran together so I'm not sure I caught everything....that'll teach me to leave the cult farm :rolleyes:

A. has been depressed all her life, with frequent weeping spells (seemingly over nothing), even as a child. She has pernicious anemia (B-12 deficiency) and will need to have shots the rest of her life. Her abdomen bloats up, and for years she's had to run to the toilet an hour or so after every meal. Other stuff: ultra-sensitive to being touched and sometimes can't bear to take a shower; rosacea, foggy brain, memory problems, sinus problems, allergic to many foods.

Other than the pernicuous anemia, that's me! Curioser and curiouser... Maybe it is the histamine!

Aaaah....she's not slippin after all. :D

Hey guys, I'm out too!! I'm off to get more ice cream and enjoy the weather. Its gonna be 108 today. Woohoo! Gotta love it! :D

You are out of your flippin' mind!!! :blink:

OMG, YES!!!!! Mold is especially bad! If you react to environmental molds, NEVER eat bleu cheese!!!!! And NEVER let a doctor give you penicillin!!!!! You could go into prophylactic shock. Many years ago I almost died from a penicillin shot.

Cissie

Really? I was like, 4+ on my allergy tests for mold, I'll have to ask the allergist about penicillin. I'm pretty sure I've never reacted to the cillins in meds. Thanks for the heads up!!!

I feel so sorry for how far behind AndreaB is gonna be....

We need Cliff's notes :P Every hour is a 100 page booklet.

Thanks for your help. I'm getting married on August 19!

Congrats!!! :D

Green12 Enthusiast
No!!!Don't leave it at that!! Tell me more!

I'm just not a big fan of ibuprofen. I took it for years, in high doses for excruciating period cramping. Actually it can't be classified as "cramping" it was period pain that I would go into shock from and pass out every month, but I digress..... it was the only drug I would take and I hated it but it did help witht he pain and all of my docs said, "well, if it works...."

Anyhow, I have done a lot of research and it does cause ulceraions in the stomach and intestinal linings, and what the call "other GI side effects". In people who already have GI issues it can make those problems worse and create more. I have since stopped using it, but I know that I further damaged my GI tract when taking it.

But everyone has to decide whatis best for themselves, that's why I just say proceed with caution.

Rachel--24 Collaborator
Rachel--To see the diet, click on the picture of the food at the bottom center of the page. Incidendly, this is the exact kind of diet I follow based on what does not make me sick.

Thanks Jersey,

How the heck did I miss that? Theres only a link right there in the text...highlighted and all. :ph34r:

Too much ice cream...freezing my brain again. :P

OK...

Julie, I guess the diet can be as restricted as you need it to be depending on severity of symptoms. There is no way I could follow this girls diet. Some of those things will trigger a reaction by themselves but if I was eating them all together like that....day after day...within a week I'd be totally sick again.

Maybe if I were to limit my portions....like instead of a whole avocado...eat only a small piece. Thats just not me though..I would never be able to eat just a small piece of anything.

If I ate eggs, pork, avocado, plums, kiwi...all in one day like that?? Sheesh...I dont even know how thats called a histamine restricted diet? :unsure:

Also I'm confused about the no dairy products thing. Far as I know pork, avocados, bananas, eggs and a bunch of other stuff shes eating is more likely to cause a histimine build-up than milk. I thought it was only fermented dairy that caused problems. Cheese, yogurt, kefir, buttermilk...stuff like that. Those are the things that give me histamine reactions...milk doesnt though. :huh:

Camille'sBigSister Newbie

Paused on my way out to read a pm.

Gotta say this: Apples - very bad for me because I'm allergic to pectin. They're okay if I peel them very well. Grapes - can't eat them because I'm deathly allergic to ingested mold. Bananas - can't eat them if they're overripe (see histamine) or underripe. Have to catch them at the just-right stage.

I'm really going to bed now.

Cissie

DingoGirl Enthusiast
Holy Cow....we just passed 200 pages. :o

And still...not a single balloon has dropped for us. <_<

once again, overzealous and premature posting, not having read through all pages... :ph34r: can't see to stop myself...

YES we will have gossip mags, and plenty of time to read them and laugh about Hollywood mishaps.. WAIT - - - OMG they'll be writing about US and SOOOOO jealous of our GFPCF, with paparazzi disguised as CELIACS ALL TRYING TO GET IN!! HOLY SCANDAL BATMAN!!!! (shouting here, learned it from Donna).....

not a balloon has dropped yet...but I had a scary thought....what if, just like emoticons are limited, the PAGES of our thread are limited.....OMG.....hold me.....scared again...... ;)

I've always been very choosy about my food, don't eat fast food, last golden arch experience was close to twenty years ago and even back then I hardly ever ate an fast food. Most of my twenties in California I ate organic food, in my thirties we had a farm and grew much of our food, ran an organic juice bar deli in my forties and now am part of an organic food co-op. I love food. :)

well Rinne you are just PERFECT for our farm, aren't you!! you're going to be running the juicing stand as well....

wait, where do you live?? you're counting in celsius?

How dare you scoot out of here without having to read the lessons of the day!!

:lol::lol:

I see how you are. <_<

...and this is the reason I'll be voted out of the cult farm, for not paying enough attention.... :ph34r: reading too fast, and I'll flunk the exams...

I hope my silliness doesn't offend anyone...some of you probably just SKIP my posts entirely since there will be NOTHING science-related :ph34r: CAn I still read along and learn??? I want to stay in the farm.....I"m good for other things..... :lol:

rinne Apprentice
Rinne, I didn't realize I was speaking to an expert. I feel a bit foolish, preaching to the "Amen corner!" Habit, I guess. In my circle I was so alone for so long. I got looks like, "What the hell is she talking about?" and, "Oh, Cissie's on a soapbox again. Let's just indulge her, wink, wink."

Cissie, preach away. :) I am no expert. Like you I've gotten the wink, wink response plus I've had the occasional smirk. I think people now think that the Celiac is just more of my "food trip" meanwhile I see them getting sicker. I stood behind a man in the drugstore who paid $356.00 for his prescriptions and people think organic food is expensive. :rolleyes:

Rachel, I'll go looking for it, I'm realizing that I need to capture and save lists like that because this thread is enough just reading forward let alone back. :lol:

Celia, I've never heard about silent migraines, that was very interesting, thanks. I sure hope you don't have the AS, no fun at all.

So, let's see there is the:

1) gluten free diet

2) the London AS diet (for the Ankylosing Spondylitis) low starch

3) the histimine free diet

4) the rotation diet

5) the water challenge

I'm hungry. :(

rinne Apprentice
well Rinne you are just PERFECT for our farm, aren't you!! you're going to be running the juicing stand as well....

wait, where do you live?? you're counting in celsius?

Reporting for juice bar duty anytime but I'll need a Rachelville visa, I'm way up in Canuckistan. :lol::lol::lol:

Me either though mostly I am laughing. Honest.

I just had some blood work done to test for arthritis but I haven't heard back yet. My mother has it as do two of my sisters and it seems to be related to Celiac through the gut. I am going on the basis of symptoms, one definite sign is the tendency to curl up in the fetal position. It is something I noticed myself doing in the past few months and was wondering where it came from and then when I talked to my sweetie about it he said that he has noticed in the past year that once asleep I go into that position. :(

I definitely have not figured it out though I take hope from the posts of people who have been gluten free and seen a remission in pain.

rinne Apprentice

What's Morphin?

I was told a three years ago that I had arthritis in my hand and knee, they took x-rays of my knee and asked if I wanted medication. I said no. Now I am going DUH and smacking myself upside the head :lol: I guess I just wasn't in enough pain to stop and think about whether there were things I could do differently. :angry:

There is a story that Suzuki Roshi, a Zen teacher, told about four horses. The first horse just has to see the shadow of the whip and it is off and away, the second needs a light smack, the third a welt is raised but the fourth horse must be struck to the bone to get it to move. I figure I am the fourth horse. :lol::lol::lol:

I think part of my problem right now is that I am not sticking with any one diet for long enough to see how it is working. I start feeling a little better and then I have to push to see how far I can go, the truth is I can't go very far before I have gone too far. :(

I think Rachel may really have figured something out with the histamines.

I'm so sorry it feels like your body has turned against you, do I remember you saying that your doctor told you that you are doing better? I think when we have gotten really sick it is like falling into a deep and dark place and it takes all our will and courage to climb out.

And I try to remember that, as Dr.Yan says, "we must love the body, we must love life".

VydorScope Proficient

Silent Migranes... sheesh you guys aer good. :blink:

Daxin Explorer

OKay..I need to rant here, then start another warning thread about this.

I just was reeading my box of Almond Nut Thins (this goes back to alst night). There is a logo on the front that declares them a "proud sponsor to the Celiac Foundation". However, on the ingredient list in bog bold letters...Warning, produced on a line that also produces products conatining wheat! :blink::huh::blink::huh:

Are those two not exclusive of each other?

Fiddle-Faddle Community Regular
What's Morphin?

Isn't Morfin Voldemort's uncle in Harry Potter and the Half-Blood Prince? Or was that his grandfather?

VydorScope Proficient
OKay..I need to rant here, then start another warning thread about this.

I just was reeading my box of Almond Nut Thins (this goes back to alst night). There is a logo on the front that declares them a "proud sponsor to the Celiac Foundation". However, on the ingredient list in bog bold letters...Warning, produced on a line that also produces products conatining wheat! :blink::huh::blink::huh:

Are those two not exclusive of each other?

No. Anyone can sponser any one... I could be a wheat farmer and sponser the Celiac Foundation.

rinne Apprentice
I just was reeading my box of Almond Nut Thins (this goes back to alst night). There is a logo on the front that declares them a "proud sponsor to the Celiac Foundation". However, on the ingredient list in bog bold letters...Warning, produced on a line that also produces products conatining wheat!

Ryan, the question I have is does this company make anything that is gluten free? Is this a marketing strategy that may lead to confusion for Celiacs, for example if I saw "proud sponsor to the Celiac Foundation" I would probably assume it was gluten free unless I read the back and if I had already made the connection with Celiac on the front of the box I might not read the back. :(

I know that I tend to be suspicious but I think it is fair to assume that the profit line is what big business bases their behavior on and ethics are secondary. I also have to wonder why the "Celiac Foundation" would take a sponsor that is not gluten free when clearly part of the deal is companies make a donation (how much) and they get to use the Celiac Foundation seal of approval basically. I've done a little fundraising and it sounds to me like they hired a professional fundraiser who is not a Celiac.

Jean-Luc Rookie

That was a lot to catch-up on.

spinached :lol:

Well one of the High Histamine traits does not sound too bad .... :P penguin you made me laugh.

For those who asked, my wife and I picked the name Genevieve (mainly my wife, but I like it). Let's hope this pregancy goes well. 20 weeks down, 20 to go.

Good to see Andrea is ok, computer problems aside.

A warm welcome to all the new residents.

Rachel--24 Collaborator
Sorry, I had 10 pages to read and they all ran together so I'm not sure I caught everything....that'll teach me to leave the cult farm :rolleyes:

Chelse...yeah that'll teach ya!! :P

I wonder how many pages poor Andrea's gonna have to read once she gets back to the farm? :o

You are out of your flippin' mind!!! :blink:

:lol:

Nah...that'll be today when I'm out there pulling weeds and mowing the lawn. :D

Well one of the High Histamine traits does not sound too bad .... :P penguin you made me laugh.

Haha...

I bet I know which one :P

Jean-Luc Rookie
I bet I know which one :P

:lol::rolleyes::rolleyes::lol:

Glad to hear you can have dairy again. I bet you will need some ice cream later today after working on the lawn. The weather out here is wet and humid. On and off rain yesterday and today.

Off-topic - Floyd Landis is incredible. I cannot image the pain the guy is in with that hip of his.

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      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
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