Very sick... Not sure I want to go through testing and need advice

[MonicaW071787]

Hi, I need some advice. I've been very sick the last year. I was diagnosed with fibromyalgia and bladder issues years ago so I always attributed the constant fatigue, muscle aches and sick feeling to that. But this last year has been unbelievably bad. At the beginning of the year I started to experience what seemed like severe nausea spells followed by cyclic vomiting at times. So sick I would be hugging the toilet multiple hours into the night and other times just vomiting once and feeling better.  I also started to develop chronic diarhea. Every day it seemed like. I found myself going to the store to buy liquid nausea medicine. I would also experience abdominal pain under both ribs and in my lower abdomen and sometimes spread out throughout my stomach. What was most concerning to me was that I dropped from 145 to 130 in two to three weeks. I don't lose weight easily in fact I'm usually bloated and have constipation.  I ended up in the hospital twice because I literally thought and felt I was dying. Hospital ordered a cat scan and everything came back immaculate. My blood work was off. I was diagnosed with hypokalemia due to low potassium and also had low sodium. I'm assuming from the constant vomiting and diahhrea. I don't have insurance and now will be getting some during open enrollment this year. Everything I could look up that wouldn't show on a cat scan and that matched my symptoms were gastrointestinal issues mostly Celiac. My grandmother was told she had an awful allergy to wheat when younger.. not sure if she was ever tested for Celiac. Thought it was wheat allergy but I can't find anything about a drastic drop in weight. I also had to drink ensure or boost to keep my weight up. Here's my issue. This is why I think it's Celiac. I switched to vodka because I was told by another person who had problems with allergies and a reaction to whiskey. I saw an allergist growing up bc I was very allergic to so many fruits and vegetables, cotton wood esp trees and grass etc. When I switched to vodka I could tell a difference. Except my husband and I would go eat at this one place from time to time and they had great well prices on their drinks.  Apparently big mistake. My tummy bloated I felt nauseous and would get a bad headache. Found out their vodka was made with grains that have wheat. So I decided to try a gluten free diet until I could get insured because anything is worth trying being as sick as I had been. I even completely quit drinking for awhile. Within two to three days almost all my symptoms completely disappeared. My diahhrea turned to loose but more solid stool and nausea was completely gone. I was prescribed zofran in the hospital which has been my life saver. Sad when you think about it. Well I decided to try a piece of bread other day and within 5 hours my nausea came back, my stomach started hurting really bad and I felt hot and flushed feeling like I was going to defectae at both ends. So I swore off gluten again. It's also worth noting during this time I also dropped another 5 pounds. I am 125 at 5'4 now. Was up to a whopping 150 last year. Well last night I accidentally consumed gluten. I picked off a piece of pepperoni from my kids pizza thinking it's meat and it shouldn't have gluten even tho I know gluten can hide in things I didn't think it would be in that.. stupid.  Within 30 minutes I started sweating and got extremely nauseated. Reaching for my liquid nausea medicine because I have to pick up my refill on zofran from pharmacy because I haven't needed it until last night when I ended up puking again. My husband asked what I ate and I told him it was just one pepperoni... Well apparently is HIGH in gluten. Just one session of puking this time thankfully. I still feel awful. My concern is I don't know if I want to go through testing . I don't know if I can tolerate being sick that long but I do want to know for sure. But is being sick worth the test and what can I do to avoid losing more weight and deal with the symptoms if I do decide to test? I drink a boost everyday just to maintain my weight. There's no exaggerating when I say I literally feel like I am dying when I consume anything with what I believe to have gluten in it. I don't even need Google to know at this point. Need some advice please. 

[GFinDC]

Hi Monica,

You may have celiac disease.  Your description of your symptoms certainly matches.  To be tested they have you eat a small amount of gluten for 12 weeks before the blood antibodies testing.  And 2 to 4 weeks for the endoscopy test.  During the endoscopy they take 4 to 6 biopsy samples of the small intestine inner lining.  They check those biopsies for evidence of typical celiac disease damage.

There are a couple other tests that can be done.  One is a genetic test to see if you have the genes for celiac disease.  The gene test doesn't prove a person has celiac though, it only shows they can develop it.

The other test is for DH (Dermatitis Herpetiformis).  DH is an itchy skin rash that only people with celiac disease get.  They take a skin biopsy to test for it.

When a person has celiac disease they can have damage to the small intestine.  The small intestine is where food is broken down and absorbed into the blood stream.  So when it's damaged we can't absorb nutrients like vitamins and minerals efficiently.  So people can develop vitamin/mineral deficiencies.

Celiac disease is an auto-immune condition.  So even a tiny amount of gluten can cause a reaction.  Instead of attacking a microscopic germ the immune system attacks our own body when it sees gluten.  You know germs are small, but the immune system reacts to them.  That's why a little tiny bit of gluten on your pepperoni can cause symptoms.  Or sharing a peanut butter jar with a gluten eater, or mayo jar etc.  We call that cross contamination.

[ch88]

Monica, 

Wheat allergies are also common. An allergic reaction produces histamine which can cause breathing problems in some cases but probably not all. Nausea and sweating are in some cases symptoms of a food allergy.  

Unflavored vodka is distilled which removes all detectable traces of gluten even if it is made from grain. Flavored vodka may contain wheat. I don't know about Pepperoni. 

Sometimes if someone eats a food that they are allergic to they are fine at first. Then they go to exercise or they drink alcohol and they get an immune response. 

If you do decide to get tested for celiac disease you may want to rule out a wheat allergy first. 

[MonicaW071787]

16 minutes ago, GFinDC said:

Hi Monica,

You may have celiac disease.  Your description of your symptoms certainly matches.  To be tested they have you eat a small amount of gluten for 12 weeks before the blood antibodies testing.  And 2 to 4 weeks for the endoscopy test.  During the endoscopy they take 4 to 6 biopsy samples of the small intestine inner lining.  They check those biopsies for evidence of typical celiac disease damage.

There are a couple other tests that can be done.  One is a genetic test to see if you have the genes for celiac disease.  The gene test doesn't prove a person has celiac though, it only shows they can develop it.

The other test is for DH (Dermatitis Herpetiformis).  DH is an itchy skin rash that only people with celiac disease get.  They take a skin biopsy to test for it.

When a person has celiac disease they can have damage to the small intestine.  The small intestine is where food is broken down and absorbed into the blood stream.  So when it's damaged we can't absorb nutrients like vitamins and minerals efficiently.  So people can develop vitamin/mineral deficiencies.

Celiac disease is an auto-immune condition.  So even a tiny amount of gluten can cause a reaction.  Instead of attacking a microscopic germ the immune system attacks our own body when it sees gluten.  You know germs are small, but the immune system reacts to them.  That's why a little tiny bit of gluten on your pepperoni can cause symptoms.  Or sharing a peanut butter jar with a gluten eater, or mayo jar etc.  We call that cross contamination.

Thank you so much for taking the time to read my post and write me. I have been pretty convinced that there's a great possibility it is Celiac. I know I have to be careful eating out anywhere because I have eaten places so called "gluten free" items to end up experiencing the ill feeling symptoms again. I've def read up on cross contamination and realized even french fries can be contaminated with gluten if cooked in same fryer as other gluten filled foods. I've experienced that.  My symptoms were not as severe when it happened but def still there and bothersome. As far as testing goes what would you recommend eating that wouldn't make me as sick as last night but sick enough to test positive? I would like to try to be as least sick as possible but do not want to mess up the test results. As far as the rash goes, I don't believe I have that but I do have another skin condition called keratosis pilaris. Basically the skin on my upper arms and upper legs is bumpy feeling. I've also noticed it has smoothed out some since staying away from gluten. I talked to a friend who has the same skin condition I do and they were told by their doctor that theirs was linked to Celiac somehow but it does not look like the DH rash I see online nor is it itchy. I'm not sure if you have heard of it but I've lived with it since I was a child and it used to make me feel very self conscious. I def plan to have the antibody blood test. It's night and day for me staying away from gluten and I really dread having to put it back into my body. My husband and I have 5 children together and they are alot of work so I'm really worried about being able to function. Thankfully I work from home. This has worked in my favor as most days I feel I don't want to do anything but lay around because I feel sick and tired. I also started taking naps every day because I would be so tired even though I was doing absolutely nothing lol. Now I have energy, I want to clean and get out the house and enjoy spending time with my kids outside. I'm blessed because my husband has really picked up my slack when I was down. 12 weeks is a long time but then again I have been sick for a year now. 

[MonicaW071787]

17 minutes ago, ch88 said:

Monica, 

Wheat allergies are also common. An allergic reaction produces histamine which can cause breathing problems in some cases but probably not all. Nausea and sweating are in some cases symptoms of a food allergy.  

Unflavored vodka is distilled which removes all detectable traces of gluten even if it is made from grain. Flavored vodka may contain wheat. I don't know about Pepperoni. 

Sometimes if someone eats a food that they are allergic to they are fine at first. Then they go to exercise or they drink alcohol and they get an immune response. 

If you do decide to get tested for celiac disease you may want to rule out a wheat allergy first. 

Thank you so much for that information. Yes I have def had periods where I had trouble breathing. During these times my heart would race. I know avocados and other fruits and vegetables used to only make my roof of my mouth feel itchy and my gums would bleed and feel swollen but it never used to give me a hard time breathing until recently. I love avocados and would eat them all the time since I never had an anaphylactic reaction until recently. I didn't know that eating something you are allergic to over and over could produce that. I ate avocado almost every day and when I quit gluten I decided one morning to eat a whole haas avocado thinking nothing of it. I will never ever do that again now. My heart raced my blood pressure shot up to 133/97 and heart rate was 105. I felt like I was having a severe panic attack. It started with a pins and needles feeling and numb feeling in my hands and then legs. My jaw felt like it locked up and I had trouble speaking and swallowing. I almost went to hospital. I was so scared. It lasted about hour or two then my blood pressure dropped to 90/60 heart rate was 60 and I could breathe a little better and then I was so tired I fell asleep. I also had an episode a year ago where I fainted sitting down after eating a papaya for first tine and I'm not sure if I'm allergic to those. It also started with a panic attack. My allergies have never been that severe before so I'm not sure why now it's happening. I don't eat anything anymore that used to give me the itchy mouth. I'm terrified. I plan to see an allergist as well. 

My mom thinks I could have histamine intolerance as alot of the foods that you have to stay away from are similar to the gluten filled foods. I don't believe this is the case as I eat a spinach salad with tomato every day for lunch with no problems but one little pepperoni bothered me. But I'm not discarding the idea either yet. It def was a little scary experiencing that though 

[ravenwoodglass]

You have gotten some good advice already so I don't have much to add. As far as how much gluten to eat before testing you need to consume a slice or two of bread or a couple servings of a gluten food for about 2 months or so before blood work. They say 2 weeks is enough before an endo but most doctors will not do an endo without the blood test first. Talk to your doctor they may be able to give you some medication to make the challenge a bit easier. An allergist would be a good idea since you are having some symptoms that could be an actual allergic reaction. My allergist was the one who finally figured out I was celiac and sent be back to my GI for a formal diagnosis. When he did skin prick testing out of 99 things tested for I only had one thing I didn't react to...beech trees LOL. After some time gluten free almost all of my allergy reactions went away. He said my immune system was in 'hyperdrive' from the celiac.

Also it is doubtful that there was any gluten in the pepperoni itself. It was that you took it off of a gluten pizza that would have caused a reaction. If it was Hormel pepperoni it was for sure safe. I eat it at least once a week and I am very sensitive.

You should look over the Newbie 101 thread at the top of the Coping section. It has a lot of good information on what you need to do to keep yourself safe.

 A challenge won't be easy if you are celiac but it is important to get diagnosed as you have children and celiac is genetic so they would need to be screened for it also whether they seem to be having symptoms or not. The antibodies can impact the brain and nervous system and make issues with mood and learning before GI symptoms become a real issue. 

 

[MonicaW071787]

1 hour ago, ravenwoodglass said:

You have gotten some good advice already so I don't have much to add. As far as how much gluten to eat before testing you need to consume a slice or two of bread or a couple servings of a gluten food for about 2 months or so before blood work. They say 2 weeks is enough before an endo but most doctors will not do an endo without the blood test first. Talk to your doctor they may be able to give you some medication to make the challenge a bit easier. An allergist would be a good idea since you are having some symptoms that could be an actual allergic reaction. My allergist was the one who finally figured out I was celiac and sent be back to my GI for a formal diagnosis. When he did skin prick testing out of 99 things tested for I only had one thing I didn't react to...beech trees LOL. After some time gluten free almost all of my allergy reactions went away. He said my immune system was in 'hyperdrive' from the celiac.

Also it is doubtful that there was any gluten in the pepperoni itself. It was that you took it off of a gluten pizza that would have caused a reaction. If it was Hormel pepperoni it was for sure safe. I eat it at least once a week and I am very sensitive.

You should look over the Newbie 101 thread at the top of the Coping section. It has a lot of good information on what you need to do to keep yourself safe.

 A challenge won't be easy if you are celiac but it is important to get diagnosed as you have children and celiac is genetic so they would need to be screened for it also whether they seem to be having symptoms or not. The antibodies can impact the brain and nervous system and make issues with mood and learning before GI symptoms become a real issue. 

 

That was definitely very helpful. I never knew that Celiac caused the immune system to be in overdrive. I do know I had a skin prick test when I was around 10. They did it on my back and it wasn't very pleasant. Almost all of mine swelled up as well. I thought for the most part I grew out of my allergies until recently. I plan to have another skin prick test. I didn't think pepperoni had gluten in it but from what I see when I look it up it does. It says something to do with the nitrates in it. That and proceessed meat. I believe it would have been cross contamination. The pizza was a cheap Tony's pizza lol. My husband googled "does pepperoni have gluten in it" and the first answrr said yes. I've seen other sites say no. It makes it so confusing for me when it does stuff like that. I attached a picture of what we saw in our search. It said it was high. But I'm not sure if that particular pizza does. You brought up a good point. I worry about my children because my youngest biological daughter can't eat regular Mac and cheese. I have to buy her Annie's Mac and cheese the gluten free kind. She gets a tummy ache and her head hurts. I even worried about her having a response or allergy years ago not even considering myself til now lol. I also noticed I get extremely agitated when eating gluten. Almost like im on edge  constantly. Thank you for all the helpful information. I so greatly appreciate it!

[ravenwoodglass]

I don't know where the person answering the pepperoni and gluten question is getting their info but it is wrong. I have found it to not be common to find gluten in prepackaged processed lunch meats, some are even labeled gluten free. If you live in the US wheat must be labeled if it is in an item. There is a risk of cross contamintion if you purchase some at a deli. Do ask your ped to test your daughter and don't take anyone gluten free until you test. 

 

[cyclinglady]

Blogs, fake news, what is a celiac or Non-celiac Gluten Sensitive to do?  Stick with well-established, published or non-profit (501 3(c) celiac groups.  Be wary of sites that try to sell you a cure.  The gluten-free Society certifies doctors as being gluten-free savvy.    What quackery!  Want to be certified too? I can print you off a color certificate.  I have a color printer.  Just send me $500 and I will even ship it overnight.  Yep, snake oil and Vitaveginvegimin (the famous tonic Lucille Ball demonstrated in a commercial on “I love Lucy”) is still being purchased by suckers.  

We get it.  You are sick.  We were once very sick.  So, ask questions on this forum like you have been.  We are not doctors, but this is a pretty reputable website with a very active forum.  The site founder does have celiac disease.  

Be safe.  Borrow some books from the library.  Those are typically decent and are not trying to see you something.  

Here are some non-profits fighting for a celiac disease cure and offering evidence-based medical information:  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Here is a list of top celiac disease centers located in the US.    While you do not have to go to them for treatment or a diagnosis, you can visit their website for accurate information (or direct your GP for information if he is not knowledgeable):

Open Original Shared Link

Take care.  

[MonicaW071787]

16 minutes ago, cyclinglady said:

Blogs, fake news, what is a celiac or Non-celiac Gluten Sensitive to do?  Stick with well-established, published or non-profit (501 3(c) celiac groups.  Be wary of sites that try to sell you a cure.  The gluten-free Society certifies doctors as being gluten-free savvy.    What quackery!  Want to be certified too? I can print you off a color certificate.  I have a color printer.  Just send me $500 and I will even ship it overnight.  Yep, snake oil and Vitaveginvegimin (the famous tonic Lucille Ball demonstrated in a commercial on “I love Lucy”) is still being purchased by suckers.  

We get it.  You are sick.  We were once very sick.  So, ask questions on this forum like you have been.  We are not doctors, but this is a pretty reputable website with a very active forum.  The site founder does have celiac disease.  

Be safe.  Borrow some books from the library.  Those are typically decent and are not trying to see you something.  

Here are some non-profits fighting for a celiac disease cure and offering evidence-based medical information:  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Here is a list of top celiac disease centers located in the US.    While you do not have to go to them for treatment or a diagnosis, you can visit their website for accurate information (or direct your GP for information if he is not knowledgeable):

Open Original Shared Link

Take care.  

Oh wow I didn't know that. Thank you. It's really been hard for me to find information that hasn't been conflicting. I will definitely check those sites out. Thanks for that information! Would watermelon pucker have gluten in it if it's not the bowmans well vodka from the restaurant? Bc something in that drink definitely made me feel bad. It's been really hard for me to find the correct information. Thanks a bunch!

[MonicaW071787]

1 hour ago, ravenwoodglass said:

I don't know where the person answering the pepperoni and gluten question is getting their info but it is wrong. I have found it to not be common to find gluten in prepackaged processed lunch meats, some are even labeled gluten free. If you live in the US wheat must be labeled if it is in an item. There is a risk of cross contamintion if you purchase some at a deli. Do ask your ped to test your daughter and don't take anyone gluten free until you test. 

 

I won't be putting my kids on a gluten free diet. I, on the other hand will be staying gluten free for now to avoid being sick. Whether it's wheat or not I know I feel better not ingesting it. I also thought gluten can be in things that aren't labeled as having wheat in the United States ? I guess this all is confusing me. I also heard products could be made in same facility as other products that may have gluten in them. Is that true? I will definitely utilize all the information here. Thank you all again. 

[cyclinglady]

32 minutes ago, MonicaW071787 said:

Oh wow I didn't know that. Thank you. It's really been hard for me to find information that hasn't been conflicting. I will definitely check those sites out. Thanks for that information! Would watermelon pucker have gluten in it if it's not the bowmans well vodka from the restaurant? Bc something in that drink definitely made me feel bad. It's been really hard for me to find the correct information. Thanks a bunch!

It could have gluten (which is wheat, barley and rye).    Who knows? The manufacturer is not going to disclose it. Notice there is not a nutrition label on a can of beer?   Stick with plain alcohol that has been distilled or wine or certified gluten free beer.  You get into trouble if you experiment with flavored items.  

In fact, I will not drink mixed drinks in a bar.  When they are busy, they often dunk and rinse (sink) for bacteria and not for gluten (e.g. from beer).  I ask for my wine in a plastic to go cup then.  

But...if you are feeling ill, do  not drink at all until you are well.  If your gut is damaged, no sense in harming it more.  That is my advice and I am not a doctor.   

Best to read a few books from the library about celiac disease.  The diet has a very steep learning curve, so best to stick with non processed foods as much as possible until you master the diet.  Make sure you have a safe section of your kitchen.  Your kids and hubby can gluten you with slobbery and adorable kisses (same as your pets).  

[MonicaW071787]

37 minutes ago, cyclinglady said:

It could have gluten (which is wheat, barley and rye).    Who knows? The manufacturer is not going to disclose it. Notice there is not a nutrition label on a can of beer?   Stick with plain alcohol that has been distilled or wine or certified gluten free beer.  You get into trouble if you experiment with flavored items.  

In fact, I will not drink mixed drinks in a bar.  When they are busy, they often dunk and rinse (sink) for bacteria and not for gluten (e.g. from beer).  I ask for my wine in a plastic to go cup then.  

But...if you are feeling ill, do  not drink at all until you are well.  If your gut is damaged, no sense in harming it more.  That is my advice and I am not a doctor.   

Best to read a few books from the library about celiac disease.  The diet has a very steep learning curve, so best to stick with non processed foods as much as possible until you master the diet.  Make sure you have a safe section of your kitchen.  Your kids and hubby can gluten you with slobbery and adorable kisses (same as your pets).  

OMG wow. That is amazing information. I did not know that  I truly do appreciate all your help. Makes me feel better. I will def check out some books on it as finding info online is very hard. I see a bunch of websites advocating gluten free as a way of weight loss and I'm struggling to try to keep it on. It frustrates me sometimes.  I do have my own gluten free cabinet! Haha I hide my gluten free items because I have a house full of kids who will eat my food if they could lol. I really appreciate all your help!! Thank you so very much!!

[Posterboy]

Monica,

Where to start.

They have all given you good advice.

I would definitely look into a Histamine Intolerance.

Though lower on the list . .. Avacodo has histamines in it.

Open Original Shared Link

But what I really think is the result of your latest attacks is Tyramine?

Never heard of it probably unless you drink red wines?  It or Sulfites is what is usually attributed to the headaches some people get from Red wines?

Here is an article about it.

Open Original Shared Link

read also this thread where someone else was having trouble with chocolate and  how it also has Tyramine in it.

https://www.celiac.com/forums/topic/122846-struggling-with-symptoms-and-need-some-advice/?tab=comments#comment-997839

see also this heathline article on it (tyramine) and yes avacodo is on that list too!

Open Original Shared Link

so while it could be histamine related and probably is??? try the low tyramine route first.

It explains your headaches better.

You might also have trouble with cheeses.  the tyramine can cause the high BP you mentioned and both processed meat (ie pepperoni), cheeeses and avacodos have tyramines in them.

It is called "hypertension crisis"  here it is explained in cheesses (extremely high in tyramine) but your avocado can trigger the same less severe reaction.

Open Original Shared Link

though the article is about cheese? it is really about how tyramine in Cheeese or Avacoda in this case (a source of Tyramine) can cause your BP to go into crisis.

For your fibro problems read this thread

https://www.celiac.com/forums/topic/122884-muscle-twitching-and-wasting/?tab=comments#comment-997782

Vitamin D is important for fighting Fibro problems and Magnesium is important for muscle fatigue.

For Histamine problems read this article on Histadelia.

Open Original Shared Link

we often have more than one thing going on when we are sick ... so it might be both the tyramine and the histamine causing your trouble.  together they can be tough to fight.

Eliminate the tyramine first then see if it is still the histamine problem.

For the bladder problems have your doctor check your EBV.

Open Original Shared Link

This reserach explains how when we are low in Magnesium the EBV virus binds to the same cite/receptor in our cells causing chronic fatigue.

magnesium Citrate is easy to find  and take .... just never take it on an empty stomach.

Magnesium Glycinate is also a great form to take it in.

Open Original Shared Link

I hope some of this is helpful.

We can't diagnose or treat you but as cyclinglady noted you have landed on a good forum here.

I do alot of research so I run across things other than gluten and try to see how they are or might be related.  Sometimes they are related . . ..sometimes they are not.

I am reducing my time on this forum to focus more on family and faith issues then I see where someone is still struggling and I can't help myself so I just try and share what I have learned.

But I find usually (there are no formulas).

taking a B-complex 2/daily . . .B-Vitamins help with stress!

Magnesium Citrate or Mangesium Glycinate with meals

And a Vitamin D will/does help a lot of people.

Again I hope this is helpful but it is not medical advice.

search this site  .. . it has a lot of good threads that might help you.

but I found my low stomach acid was my main problem. . ..it makes every thing a viscous cycle. . . .which leads to low nutrients (fatigue etc.) in time.

Once I found out about Magnesium and how it could help fatigue I knew I was one to something that could help others.

Then I searched out how/why  I could be low in Magnesium (have chronic fatigue etc.) you describe and that lead me to low stomach acid as a cause.

this doesn't explain all your problems maybe but it is a good place to start.

Here is an article about it.

Open Original Shared Link

and test out the Tyramine and Histamine issues/theory by eliminating these foods and reintroducing select ones one at time I think you will find it is one and/or both of your problems.

I would say problem histamine issues are probably better known than tryamine problems but both can be serious medical problems.

And why you are going to the histamine path check out MCAS explained well by the celiac patient.

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

but treating your histadelia problem might help MCAS issue(s) because they both involve histamine deregulation and fixing one might defuse the other.  they tend to be (co-)dependent diseases.

This is not medical advice but I hope it is helpful.

But sure to read all the links when you get a chance but this is a lot of information to read all at once so just skim this response for now then when you have more time you can bookmark this thread and read it in more detail.

good luck on your continued journey and God speed!

"Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Posterboy by the grace of God,

[MonicaW071787]

16 hours ago, Posterboy said:

Monica,

Where to start.

They have all given you good advice.

I would definitely look into a Histamine Intolerance.

Though lower on the list . .. Avacodo has histamines in it.

Open Original Shared Link

But what I really think is the result of your latest attacks is Tyramine?

Never heard of it probably unless you drink red wines?  It or Sulfites is what is usually attributed to the headaches some people get from Red wines?

Here is an article about it.

Open Original Shared Link

read also this thread where someone else was having trouble with chocolate and  how it also has Tyramine in it.

https://www.celiac.com/forums/topic/122846-struggling-with-symptoms-and-need-some-advice/?tab=comments#comment-997839

see also this heathline article on it (tyramine) and yes avacodo is on that list too!

Open Original Shared Link

so while it could be histamine related and probably is??? try the low tyramine route first.

It explains your headaches better.

You might also have trouble with cheeses.  the tyramine can cause the high BP you mentioned and both processed meat (ie pepperoni), cheeeses and avacodos have tyramines in them.

It is called "hypertension crisis"  here it is explained in cheesses (extremely high in tyramine) but your avocado can trigger the same less severe reaction.

Open Original Shared Link

though the article is about cheese? it is really about how tyramine in Cheeese or Avacoda in this case (a source of Tyramine) can cause your BP to go into crisis.

For your fibro problems read this thread

https://www.celiac.com/forums/topic/122884-muscle-twitching-and-wasting/?tab=comments#comment-997782

Vitamin D is important for fighting Fibro problems and Magnesium is important for muscle fatigue.

For Histamine problems read this article on Histadelia.

Open Original Shared Link

we often have more than one thing going on when we are sick ... so it might be both the tyramine and the histamine causing your trouble.  together they can be tough to fight.

Eliminate the tyramine first then see if it is still the histamine problem.

For the bladder problems have your doctor check your EBV.

Open Original Shared Link

This reserach explains how when we are low in Magnesium the EBV virus binds to the same cite/receptor in our cells causing chronic fatigue.

magnesium Citrate is easy to find  and take .... just never take it on an empty stomach.

Magnesium Glycinate is also a great form to take it in.

Open Original Shared Link

I hope some of this is helpful.

We can't diagnose or treat you but as cyclinglady noted you have landed on a good forum here.

I do alot of research so I run across things other than gluten and try to see how they are or might be related.  Sometimes they are related . . ..sometimes they are not.

I am reducing my time on this forum to focus more on family and faith issues then I see where someone is still struggling and I can't help myself so I just try and share what I have learned.

But I find usually (there are no formulas).

taking a B-complex 2/daily . . .B-Vitamins help with stress!

Magnesium Citrate or Mangesium Glycinate with meals

And a Vitamin D will/does help a lot of people.

Again I hope this is helpful but it is not medical advice.

search this site  .. . it has a lot of good threads that might help you.

but I found my low stomach acid was my main problem. . ..it makes every thing a viscous cycle. . . .which leads to low nutrients (fatigue etc.) in time.

Once I found out about Magnesium and how it could help fatigue I knew I was one to something that could help others.

Then I searched out how/why  I could be low in Magnesium (have chronic fatigue etc.) you describe and that lead me to low stomach acid as a cause.

this doesn't explain all your problems maybe but it is a good place to start.

Here is an article about it.

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and test out the Tyramine and Histamine issues/theory by eliminating these foods and reintroducing select ones one at time I think you will find it is one and/or both of your problems.

I would say problem histamine issues are probably better known than tryamine problems but both can be serious medical problems.

And why you are going to the histamine path check out MCAS explained well by the celiac patient.

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

but treating your histadelia problem might help MCAS issue(s) because they both involve histamine deregulation and fixing one might defuse the other.  they tend to be (co-)dependent diseases.

This is not medical advice but I hope it is helpful.

But sure to read all the links when you get a chance but this is a lot of information to read all at once so just skim this response for now then when you have more time you can bookmark this thread and read it in more detail.

good luck on your continued journey and God speed!

"Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Posterboy by the grace of God,

I love Jesus so the fact that you posted scripture means alot to me. He has been my strength through all of this and I believe God speaks through others. As far as research goes I love it. I research everything. I am a very open minded individual and like to learn about things that I do not have knowledge about. Thank you so much for all your information. I am definitely going to check out all those sites you sent. I read up on mast cell activation before also so that is def helpful. Thank you for the info on how to reintroduce foods. That is really beneficial for me because I have been curious how to test each one and what I should reintroduce first so thank you so much for that! My mom suggested staying away from both gluten and histamine until I can  figure out what may be causing  my issues. Thank you so much for taking the time to reply. God bless you and your beautiful family. I haven't had any issues with cheese that I am aware of yet. I actually increased my intake of cheese since my carb instake has gone down a little bit. I haven't noticed anything yet but I am going to take your advice and stay away until I do know . As far as red wines go... I can't have wine or champagne. It makes me very nauseated and gives me headache. I actually will vomit from drinking it or beer. They both give me the same reaction.  Veryful useful information. I am def going to test these. I definitely have a B12 deficiency and vitamin D deficiency. I have been diagnosed with interstitial cystitis at 22 with a sodium bladder test they performed on me. I have pelvic floor dysfunction and overactive bladder. My emg back then also showed muscle wasting on one side in my legs.  I'll definitely be looking at these sites. I had no clue about tyramine. I know histamine is hard to pinpoint because it's like a bucket effect. You may not experience symptoms until consuming too many foods that release or block or contain histamine. I bought a journal and will be keeping a food diary. I've always had the weirdest things happen to me growing up. I've contracted a fungal rash all over my body before from tanning lotion that has sit in the sun and also had shingles on my face at 22 years old. Shingles is not common for a young person let alone on the face. I've had chronic fatigue since I was 18. I even remember seeing a doctor for it with no solution given. My body constantly aches and I was seen for possible multiple sclerosis at one point in my twenties because my mom had it and I was experiencing muscle spasms and burning in my legs . My MRI was clear though. Those symptoms disappeared after becoming pregnant my youngest daughter thankfully but I definitely encounter so many weird medical issues. We just heard a sermon this morning on wisdom and the scripture in proverbs 3:5-6. Nothing is coincidence with God and I will definitely be looking into all this. Again thank you so very much!!! 

[Posterboy]

Monica,

It is mainly aged cheeses that are high in tyramines (depending on your sensitivity  to tyramine)  and process meats are the main triggers.

though there are whole lists of food to avoid on a low tryamine diet.

see this SFgate article and read all their links it is really very good.

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It describes it perfectly!

quoting SFgate

"Finally, plain vodka, gin and white rum are all low in histamine, but avoid other alcoholic drinks such as beer, wine and cider."

if your vodka was flavored it  had added histamines probably like strawberry etc.

Here is a great overview of how histamine and tryamines are related.

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the tryamine triggers the histamine reaction.

for anybody else following this thread I also recommend this article for those dealing with mast cell issues.  it is about lyme disease but MCAS triggers some of the same problems for lyme sufferers.

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finally have your DAO levles checked it can confirm you have a histamine or Histadelia (unconrolled histamine) problem.

see this resarch entitled "Serum diamine oxidase (DAO) activity as a diagnostic test for histamine intolerance"

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I must stop for now but I think you are on the right track with the Histamine/Tryramine issue.

Know that you know what it could be . . ..you can work to manage it.

You can't do what you don't know.

I hope this helpful but this is not medical advice.

As always “Consider what I say; and the Lord give thee understanding in all things”  this included.

2 Timothy 2:7

Posterboy by the grace of God,