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      Frequently Asked Questions About Celiac Disease   09/30/2015

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My Histamine Journey
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25 posts in this topic

I'm NCGI. Over the last two years since going gluten-free, I've had to eat a very limited diet: grain-free, whole foods, prepared at home only, no eating out. I couldn't tolerate any processed "gluten-free" foods or many whole foods either.

 

During that time I have started to improve a few times, think I'm over the hump, then every time I try to add a new food I backslide… again. A month ago I really thought I was feeling better, getting somewhere. Nope.

 

For the past ­­­­month I've been posting about my sudden new symptoms, trying to find the cause, with the help of many of you. I thought it was fragrances in products. Then I realized I starting itching the same day I added canned tuna to my diet. At first I thought… duh, too much mercury!

 

I stopped eating tuna. That helped, but then other foods started to give me the same symptoms as the tuna and worse: itchiness, irritated eyes, sore throat, achy all over, nausea, headache, increased heart rate. I even started to get the beginning signs of anaphylaxis: swollen throat, slightly impaired airway: yikes!!  

 

Then the word histamine entered my life. I learned that the histamine levels in my body had skyrocketed, causing the allergy-like symptoms: I had developed a Histamine Intolerance. I learned that my diet had been full of high histamine foods.

 

Trying foods, I had to limit my diet to only the lowest histamine foods and I started to feel better right away. Great! So here's what I can eat now: NOTHING! That's how it feels. I'm losing my mind, limited to the few foods I can tolerate in the produce section, my homemade chicken soup, and just s+p for "flavor"!

 

If I have a temporary Histamine Intolerance it's possible I could be on this elimination diet for who knows how long, then gradually add other foods back in. Or worse I could have, not a temporary problem, but a new condition that could be with me for life, limiting what I eat forever. One of the ways I have gotten through the last two years is believing I will be able to eat more normally at some point.  Now the prospect of losing that possibility is incredibly hard to swallow (pun intended).

 

I see an Allergist this week for testing. If I'm "lucky", my DAO enzymes are low and I can take a supplement for that until my leaky gut issues resolve more and my body can make it's own enzymes again. Leaky gut… the bane of my existence… I still have very stubborn chronic C too… not a good combo.

 

My brain - still foggy after two years - is spinning with all the new information I'm learning about what I might be up against. Terms I never knew, concepts I never wanted to know. I just want to get in bed and pull the covers over my head. That gets boring though.

 

Going for a walk helps. Being outside in the fresh air, seeing plants and flowers, wildlife, makes me remember life is good, there are possibilities. I don't have inhalant allergies, pollen etc, so I've got that going for me.

 

I'm ok sometimes and other times I'm completely overwhelmed, depressed. I'm having a hard time functioning some days without a light at the end of this incredibly long tunnel. I'm single and my hopes of ever having a normal social life again are dwindling. I'm having a really hard time shaking this hopeless feeling :(

 

I'm trying to think positive. Generally I get through hard times by remembering all the ways I'm fortunate. That, and this site, are helping me keep my sanity… barely.

 

I'll write more after my appt with the Allergist on Wed. I don't like taking medications, and I have allergies to some (with hives), so I hope this doctor doesn't just hand me a prescription for pills - I will get one for an epi-pen though.

 

Maybe this doctor can think outside the box, has knowledge about my issue, and can help me. I suppose it will help when I have a better idea what I'm dealing with. Wish me luck…

 

Sara

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Sara,

I hope this appointment goes well for you. Thank you for the update. Lots of luck! Positive energy being sent your way!

K

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Good Luck on Wednesday!

 

Hopeful that you will get some solid answers from the allergist :)

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I sympathise with what you are going through but you are not alone. I was diagnosed with celiac disease 5 years ago after decades of fatigue but soon found out that celiac disease does more damage to your gut that UK NHS doctors realise. Just fired my UK NHS doc and gone private. Intolerences abound and make me tired and rather depressed so now on a GAPS diet, no carbs, no dairy, no eggs, no soya etc - really a protein, fat, veg and fruit diet and like you cannot trust eating out. This diet makes you very tired as no carbs for medium term energy. Cheated two weeks ago with a curry and white rice and what a difference! New NHS Doc is referring me to a "real" specialist. There are two ways to treat this - the first is long term GAPS diet with nutrient supplements, for year or year and a half (been on it now since mid December 2013). The second is what I call the "nuclear" strategy - strong anti-biotics to kill off all bacteria especially those in my small intestine (SIBO) and them taking pro-biotics. Latter is not guaranteed to work long term but I am willing to give it a try. Luckily I am catering trained so can cope for the most part.

 

Just waiting, like you, for a proper diagnosis/prognosis/treatment. Best of luck tomorrow.

 

Bruce

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Welcome Bruce!

 

When GAPS works it is a fantastic tool.  Sadly, I failed GAPS because I could not tolerate fermented foods.  I did, however, learn to use bone broth regularly :)

 

If anyone would like my copy of GAPS...pm me your address and I'll be happy to send it to someone that can use it.

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I sympathise with what you are going through but you are not alone. Intolerences abound and make me tired and rather depressed so now on a GAPS diet, no carbs, no dairy, no eggs, no soya etc - really a protein, fat, veg and fruit diet and like you cannot trust eating out. This diet makes you very tired as no carbs for medium term energy. There are two ways to treat this - the first is long term GAPS diet with nutrient supplements, for year or year and a half (been on it now since mid December 2013). The second is what I call the "nuclear" strategy - strong anti-biotics to kill off all bacteria especially those in my small intestine (SIBO) and them taking pro-biotics. Latter is not guaranteed to work long term but I am willing to give it a try.

 

Just waiting, like you, for a proper diagnosis/prognosis/treatment. Best of luck tomorrow.

 

Bruce, I guess I've been eating similar to the Gaps diet. I can't tolerate fermented foods either though. It sounds similar to the Paleo diet. It was really the "what my body would allow diet". I know what you mean by lacking the energy producing "carbs" with no grains. I consider vegetables to be my carbs now I guess. I find raw carrots are the most sustaining veg for me, I rely on them. Almonds help me a lot too.

 

I think a good probiotic is essential for SIBO. I just bought Culturelle, planning to start them in addition to the multi-strain Probiotic I already take. I just started taking Digestive Enzymes for the first time, and I think they seem to be helping. There are some good threads here discussing brands of both.

 

It does take time to fine tune what works. I really appreciate your input.

 

 

Thanks everyone for your support :) I have a friend coming with me to my appt now and that has lifted my spirits. She says "there is always an answer" and that is helping me a lot too. I have it posted on my wall so I can look at it every day.

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My appt with the Allergist was mixed. There were no relevant tests that he was able to give me. He didn't know anything about Histamine Intolerance testing or DAO enzyme testing. He didn't think I needed skin prick testing for life-threatening allergies, and I agreed.

 

He thinks I have developed more food intolerances from leaky gut (he knew what that was!) and I should continue eating what doesn't give me symptoms for a month, then try to add foods. He didn't think I showed any signs of anything more serious. He also said I didn't seem that sick which made me want to slug him.

 

On the plus side I did get an epi-pen script for bee stings he said I should carry. I also found out that I shouldn't have any trouble taking fish oil caps after being sensitive to tuna or trouble taking vit D3 made from wool oil since I have a sensitivity to wool.

 

I still need to know where to have DAO enzyme testing, so I'm going to post that question elsewhere.

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Answered the DAO question in another thread.

 

Your allergist can test you for 24 hour (urine) methyl histamine, protaglanin and serum for tryptase, histamine, etc. along with genes to rule out Mastocytosis.

 

Like I said...this histamine issue isn't well known among U.S. medical professionals. 

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I really don't feel (in my gut) ha ha, that I have a Mast Cell issue. The symptoms are way off.

 

Think positive with me, pleeease GS! :)

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I really don't feel (in my gut) ha ha, that I have a Mast Cell issue. The symptoms are way off.

 

Think positive with me, pleeease GS! :)

 

Have you eaten low/no histamine for at least a couple weeks to see how you feel?  It seems your going down a road of alot of what if's when you could just be healing and weeding out a couple intolerances.  That's just my opinion, but I would work of a clean diet, stay out of restaurants, and getting back to physical activity, if you haven't already.  Not everything we eat will always agree with us, really doesn't mean it's a problem food, just don't eat itl

 

Colleen

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I really don't feel (in my gut) ha ha, that I have a Mast Cell issue. The symptoms are way off.

 

Think positive with me, pleeease GS! :)

 

I never said you have mast cell activation syndrome.  I tried to explain if you are having idiopathic anaphylaxis (anaphylaxis with no known trigger) you should talk to your allergist and if needed have tests to rule out mastocytosis/mcas.

 

Unfortunately my positive attitude is on vacation this week -- life is getting in the way of my cheer.  Will return when I have a better 'tude.

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FE

 

The only way to know if you have a true histamine intolerance is to go on a low histamine diet for 4 weeks. I just explained this on your other thread about this topic. 

 

There are no definitive tests in this country.The allergist is not going to help you with this.

 

Those of us who figured this out did it by researching the disorder, making a food plan and sticking with it.

 

You can't assume you have any intolerances of any kind unless you take everything out, then reintroduce each food ONE at a time and wait a week before trialing something new. 

 

Since you are also avoiding grains & dairy, here's a quick paleo/low histamine guide, Try it for 4 weeks, then decide if you actually have HIT. 

 

i did it, it's not so bad and it clears the body for a real reintroduction experiment. Good luck.

 

http://whole9life.com/book/ISWF-Shopping-List-Histamine.pdf

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It's all good Lisa :) Thanks for your help!

 

Thanks Colleen! Yes I have been on the lowest histamine foods for two weeks already thanks to a great food list from GottaSki (thanks GS). I started to feel better right away and most of my symptoms have gone. Good reminder about exercise, even when I don't feel up to it, I'm glad I did it afterward.

 

Thanks IrishHeart for this info on Histamine Intolerance. I read different things about the length of time to stay on low histamine foods. I'm already half way to 4 weeks so this is encouraging to hear. It's great to hear from someone who's done this already. These guidelines and link will help me to do this right. Thanks so much for your help!!!

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The path to finding what else may going on besides gluten intolerance is not always a straight walk, but you can "get there"

if you are persistent. Just hear me when I say this: Don't let it consume you and make you crazy.

 

Stressing out over "is it this? is it that?" just creates inflammatory cytokines in your body and that just perpetuates GI tract issues. You --and I mean that in the editorial sense as in "all of you who may be reading this"--need to relax your body and try and make peace with food again. You can figure this out if you approach it calmly and rationally. (of course, I say all this after going through this madness myself a few years ago, so I am trying to spare you some of that cray-cray  stuff LOL) 

 

The gut can't heal if the body is under constant stress. 

 

Doing an elimination diet that takes out the major food intolerances/allergens will give your body a clean slate, so to speak.

 

Just wait a few weeks and add only ONE food protein back in at a time. wait a WEEK before trialing something else.

 

I do not agree with the "4 day rotation diet" theory because we all know it may take a few days to see the sores on your lip or  feel the ache in the joints. Systemic food intolerances are not immediate and rotating a bunch of foods around---just muddies the waters.

IMHO 

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The gut can't heal if the body is under constant stress. 

 

Doing an elimination diet that takes out the major food intolerances/allergens will give your body a clean slate, so to speak.

 

Just wait a few weeks and add only ONE food protein back in at a time. wait a WEEK before trialing something else.

 

I do not agree with the "4 day rotation diet" theory because we all know it may take a few days to see the sores on your lip or  feel the ache in the joints. Systemic food intolerances are not immediate and rotating a bunch of foods around---just muddies the waters.

IMHO 

 

 This is a good reminder that stress reduction has to be a priority, as much as the food choices we make. I think "we" all tend to talk about stress and it's consequences, for about a minute, then go back to doing whatever crazy thing we were doing before. I'm taking note of the sources of stress in my life and how to reduce them, one by one. That's new for me.

 

I absolutely agree that the strict elimination diet followed by adding one food per week only makes the most sense. Bombarding my body with too many foods would make it impossible to determine the results.

 

I get trying one food "protein" source per week, but I'm not sure about other high histamine foods I reacted too also, like fruits. Is it one high histamine food per week? Then if I react to it again wait to try it again in a month and try a different food the following week?

 

I would love to find a good book about Histamine Intolerance with the one food per week plan in it, so I could follow it and be sure to do this right.

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You do not need a book. 

 

Keep out all high hista foods for 4 weeks. if you have no symptoms, you system is clear. Trial one food at a time.

 

Add in one high histamine food  per week, for example, eat  a bunch of shrimp or lobster for one day  and see what happens, but no other high histamine foods. 

 

See what happens. maintain a low histamine diet.

Wait a week, trial something else like bacon and hard cheese or sauerkraut (that one is high).

 

if you are not having symptoms from the combo of those foods, I doubt your issue is histamine intolerance, because those would set Lisa and me into the bathroom, giving us sores on our faces and scalps, cause painful bloating and swelling in the joints, muscle pain and weakness, migraines and  have Lisa headed for the benedryl. 

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 This is a good reminder that stress reduction has to be a priority, as much as the food choices we make. I think "we" all tend to talk about stress and it's consequences, for about a minute, then go back to doing whatever crazy thing we were doing before.

 

I don't anymore. :)  I see no advantages in stressing. Never got me anywhere and it does not solve any problems. Complete waste of time worrying about things i cannot control. And the things I can? well, I find a way to control them. Now, if I could find a way to get the squirrels to stay off my bird feeders (without shooting them dead because I respect all life forms) I'd be all set.  :lol:

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ROTFL - not too many people know this one, but it's great when LOL doesn't quite cut it. Rodents are way too crafty and relentless!

 

Mmmmmm... bacon, yes!

 

By the way, I love that little guy running back and forth at the bottom of your signature, cracks me up every time.

 

Thanks IH :)

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ROTFL - not too many people know this one, but it's great when LOL doesn't quite cut it. Rodents are way too crafty and relentless!

 

Mmmmmm... bacon, yes!

 

By the way, I love that little guy running back and forth at the bottom of your signature, cracks me up every time.

 

Thanks IH :)

 

 

he's me..(symbolically) .celebrating my coming back from the walking dead ....only I let him do all  the work. :D

You can figure this out. Just stay the course.

 

ROFLMFAO --that's what I use  ;)

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 This is a good reminder that stress reduction has to be a priority, as much as the food choices we make. I think "we" all tend to talk about stress and it's consequences, for about a minute, then go back to doing whatever crazy thing we were doing before. I'm taking note of the sources of stress in my life and how to reduce them, one by one. That's new for me.

 

I absolutely agree that the strict elimination diet followed by adding one food per week only makes the most sense. Bombarding my body with too many foods would make it impossible to determine the results.

 

I get trying one food "protein" source per week, but I'm not sure about other high histamine foods I reacted too also, like fruits. Is it one high histamine food per week? Then if I react to it again wait to try it again in a month and try a different food the following week?

 

I would love to find a good book about Histamine Intolerance with the one food per week plan in it, so I could follow it and be sure to do this right.

 

IMO...since you have removed a great many foods besides histamines and had a marked improvement since the elimination of histamines -- I would stay strict with the low histamine diet while taking the time needed to safely trial all the other foods you have removed. 

 

Took me nearly six months to trial each food (not food group) individually during the 'Great Elimination of 2011' (that turned into the 'Great Challenge of 2011 and 2012).

 

For now -- I would change nothing while you come up with a plan for challenges -- for me I started with every three-four days because I had such a lengthy list.  Withing the first couple weeks I had to move the challenges to Friday afternoons because I had failed nearly every challenge and ended up with all sorts of different symptoms for each food I trialed which prevented me from working and or planning any other activity.  Sucked having months of sick weekends but my data was pretty clear and was able to keep working during those months.

 

YET...with what I now know about histamine regulation within the body (or lack there of in my case) -- I do wish histamines were removed along with all the high lectins back in August '11 -- makes me second guess what my challenge results would have been if I had known my histamine and other mediators needed controlling within my bod ;)

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Well, I took out all the high histamine foods that I was reacting to and started eating only low histamine foods 2 1/2 weeks ago. I had to change almost every single thing I was eating. Now I'm left with too little to eat. I have to add something else into my diet to be able to sustain myself. I don't have enough substantial food to keep me going.

 

Since I lost almonds and sunflower seeds I haven't felt right. I won't try sunflower seeds, the histamine is too high. I keep trying have almonds but they make me feel bad - nothing like the symptoms I was having before, but sore throat, sinus pressure, achy.

 

I'm waiting until 4 weeks to try any high histamine foods again. That leaves me with trying to add something I haven't tried in a year and a half rather than re-trying something I've had more recently. I want to try potatoes or rice because they are low histamine foods, or coconut milk.

 

I have to be completely honest about this - I need something more substantial to eat - now, not in a week and a 1/2. I don't know what to add. I've become afraid of food. I'm in tears. I don't want to make the wrong decision, but I have to be able to function.

 

Tomorrow I'm adding a food and my plan is to try potatoes.

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So sorry to read this...can honestly say without any humor at all...been there, done that.

 

Perhaps tell me what you know you can eat.  I am a magician at turning 20 safe foods (individual ingredients) -- yep that is all i had for a very long time -- into very real meals.

 

Hang in there - breath - and take one step at a time.

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Ok, I'll send you a message with what I can eat. I have six safe foods.

 

If I had twenty I'd be jumping up and down instead of losing my mind.

 

I don't have enough protein sources or any starches.

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I just found this information in another thread about dealing with anxiety:

 

"I found a book by a chap called Paul David which helped me understand anxiety better and it gives advice on recovery. He also has a website. Thing is, he explains that setbacks can occur but that doesn't mean you are back to where you were.  That helped me because there were days when it came back in force and I thought all was lost. But it wasn't, it is just a part of the process really."

 

It's a great website. It's helping me unwind, so I can think clearly and deal with what I'm facing in a more rational way. Anxiety becomes paralyzing at some point and makes it virtually impossible to solve problems.

 

There is no one who can tell me which foods to try, and I can't get around testing foods to see how my body responds. It isn't something I can figure it out beforehand or avoid entirely.

 

I won't spin in circles anymore trying to out-think this process. I will simply test the low histamine foods for now and see how I feel. It's not really all that complicated. I'm going to enjoy it :)

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I just discovered I can have grapes, nectarines, and artichokes... yay!

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