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Omg...i Might Be On To Something

Rachel--24

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confusedks Enthusiast
confusedks
Posted

LOL about the liver! I totally agree! It is SO GROSS!

Jin,

Unfortunately my body is NOT metabolizing iron at all. That is why my iron total is fine, but my ferritin is so low! They don't really know why. I am glad you're back!

As far as getting shaky, etc. after not having protein and carbs, I get it! I have protein and then 30 minutes later I can have carbs. You just can't have them at the same time. The name of the protein powder is "Now Products" egg white protein powder. If you google it, you'll find it.

The bilirubin is a worry. He didn't even get there with me. He just was so worried about my ferritin. He told me he won't treat me for anything else until I raise that. I actually feel worse when I eat red meant...I have stopped the last 2 months or so. It's just ttoooooo heavy. It made me so nauseous last time I had it, I haven't had it since.

Why would having your teeth out be a problem with Lyme? We are going to call my surgeon on Monday and see what he says. Besides the pain, their biggest concern is that I had braces and my teeth are really straight and pretty :D, so they don't want them to come in and screw up the orthodontic work I had. My bottom teeth are already shifting apparently (even with a PERMANENT bottom retainer! :o)

Andrea,

I wouldn't be surprised at all either if I had some sort of heavy metal problem! <_< As far as the cost of liver...it was really cheap! It was only a couple dollars per pound, so I don't think that is her worry. I think it's more concern for the fact that I am so anemic and we don't know WTH is going on! It is really infuriating. Thanks for the response to my PM. :)

Rachel,

You are so lucky! Our insurance covers only $75 per visit, only 4 per quarter! Doctors here, especially specialists cost around $400 just to walk in their door. :angry: I think this is why my mom is so hesitant to start a whole new regime of treatment because it will be so expensive...but my health is important.

Kassandra

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Ridgewalker Contributor
Ridgewalker
Posted
I wouldn't be able to stomach it, and I can't stand the smell of it! Probably not real cheap either, as far as your mom is concerned. :(

:o I don't know about beef livers, but in NC chicken livers are dirt cheap. If grocers charge more for it out west, that is so weird. Maybe because it's not eaten as commonly out there? I don't know.

Edit- ok just read Kassandra's post (simultaneous), nevermind. :D

CarlaB Enthusiast
CarlaB
Posted
I feel like my mom is going to kill me if I don't eat it. But I totally can't even stand the smell!

If I had the choice of liver or death, I might have to choose death. :lol:

I cannot tolerate whey protein, because it has lactose. :(

I use BioChem whey protein ... it has no lactose. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I dont think I've ever eaten liver once in my life. I have no interest...I want McDonalds Big Macs and chicken nuggets. Liver is GROSS! <pukey face green guy>

CarlaB Enthusiast
CarlaB
Posted

PS My mom loves liver and onions. If you like onions, it might be a good way to serve it.

I have a funny liver story ... I was visiting my grandparents. My grandmother made liver for me and her, and a chicken breast for my grandfather. I was cutting the liver into the smallest pieces I could and chewing it in the very back of my mouth to try to avoid tasting it ... almost like taking a pill, LOL. I was trying to be polite and GAG it down ... of course, she caught on and said, "Well, if I had known you didn't like liver, I would have made you a chicken breast like your grandfather, he hates liver, too."

Why didn't she ASK? I mean it's obviously not something a lot of people like! :lol:

I was about your age, Kassandra ... I used to spend much of the summer at their place.

CarlaB Enthusiast
CarlaB
Posted
I dont think I've ever eaten liver once in my life. I have no interest...I want McDonalds Big Macs and chicken nuggets. Liver is GROSS! <pukey face green guy>

Funny, I still haven't eaten a Big Mac! I'm eating gluten regularly with NO problems whatsoever, but I'm eating a lot healthier than Big Macs, and honestly, they just don't sound that good anymore. :( They did right up till the day I could eat gluten again! LOL

AndreaB Contributor
AndreaB
Posted
My parents never at liver, that is for sure. I think my father has eaten it before. My mother is very picky, so she would not ever eat it. For her, that is like being on Fear Factor!

In fact, eating anything health is like being on Fear Factor for her!

Your mom sounds like some of my stepsons. :lol:

Hope you're able to get your glasses on Tuesday. :)

LOL about the liver! I totally agree! It is SO GROSS!

Sounds like Sarah had some good ideas for you to try to disguise the liver. I don't think anything can disguise it, but you can always try. :ph34r:

I don't know if chicken livers would help you or if it's just beef livers. My dad loved chicken livers, even more than beef livers. Don't know how he fixed them though. :unsure:

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AndreaB Contributor
AndreaB
Posted
Why didn't she ASK? I mean it's obviously not something a lot of people like! :lol:

:lol::lol:

My parents always had liver and onions too. Seems like they may have had bacon too, but I don't really remember. I'd eat boxed Mac & Cheese or canned chili for dinner earlier than they were cooking so I could go hide in my room. Even with the door closed some of the smell seeped through. :lol:

CarlaB Enthusiast
CarlaB
Posted

My mom would order it when we ate out since no one at home liked it.

I agree, totally disgusting, smell and all ... yuck. She'd look at the menu and say, "Oh, great, they have liver and onions!"

confusedks Enthusiast
confusedks
Posted

Carla, Andrea, Rachel,

LOL! You guys are so funny!!! I am literally laughing out loud about this! :D:lol:

Sarah,

Thank you for the suggestions. I appreciate them. My mom is going to mix it in with ground turkey and make it like a meat sauce to go over pasta (only, I can't have them together...I have to wait 30 min. to be able to eat the pasta!!!! :angry:)

Well, off to bed!

Kassandra

NoGluGirl Contributor
NoGluGirl
Posted

Dear Sarah,

Those are some great ideas! :) Liver is not something I am big on. Dogs sure love the stuff. Of course, our dog eats my hair, lint, toenails, plastic, wood, and all kinds of other strange things. I am not sure he would be a good subject to base such scientificness on. :lol:

Dear Kassandra,

I am glad I am back, too. :) I always miss everyone so much. It feels so weird when I am not on here. I just cannot stand it! Not posting makes me crazy!

I did not think you were metabolizing iron. There has got to be something causing this. If it turns into ferritin, something is causing the conversion not to take place. I am going to poke around and see what I can find. There is probably a condition or number of them that cause it.

NOW has a lot of great stuff! I will see if they have it on FitRx. They are close to the plant that makes the products, so they are able to sell all of the NOW stuff for half-price. My buddy RiceGuy filled me in on this! ;) Pretty cool, huh?

Beef is also very acidic. That may be part of the reason you did not tolerate it well. I get weak if I do not have it a couple of times per week. The bilirubin situation may be aggravated by it. I am curious whether the low ferritin could have anything to do with a high level of bilirubin.

Liver issues need addressed regardless. High bilirubin can indicate gallbladder issues, since it is a part of the hepatobialary system. While we are on the topic of liver, yes it icky to eat. My suggestion is ketchup, ketchup, ketchup! Everything tastes better with ketchup on it!

Getting teeth removed or worked on if you have Lyme can cause issues. Normally, it is when there are cavitations in the areas where teeth were extracted. The bacteria can hide under there and antibiotics cannot reach them so easily. Eradicating the infection is more difficult when this occurs. Since you are younger, this may not be a concern, because you will be receiving treatment not long after or before the surgery.

My aunt's teeth moved back after she had braces, too! I am not sure I want to mess with them. You pay a lot of money to get them done, but it does not matter. Those stupid things can still move back. The wisdom teeth can definitely put your teeth out of alignment again. My best friend had to get hers out for the same reason. She had braces for four years prior to getting her wisdom teeth.

Eating the carbs separately is something I did not try the way you do it. I think I could deal with that. It is worth a shot. I can go 30 minutes after eating some protein. I love carbs, and they are impossible for me to avoid due to my hypoglycemia.

Dear Carla,

BioChem has no lactose? Wahoo! I found one that is safe! I am sure the kind I had before did have lactose. Of course, it may not have been gluten-free, either. I am not sure. :unsure:

I can relate to how you feel about liver! Well, your statement makes sense to me. Who has not heard the expression "Give me liverty or give me death!" ? :lol: Your liver story was hilarious! Don't you just love those awkward moments with family?

You have not had a Big Mac yet? I want one so bad! However, I have an idea. I can get that Top Secret Recipes books and make the recipes gluten-free. Desperate Celiacs everywhere will be ecstatic! Also, I am so happy to hear you have been eating gluten with no problems!

Dear Rachel,

I think I tasted liver once. It was not horrible, but it has a very strong taste. I am a supertaster, so that can be overpowering for me. Grapefruit is something else that is hard for me to eat because of this. I second the Chicken McNuggets and the Big Macs! Don't forget the fries, either! Super-size them of course!

Dear Andrea,

My mother and your stepsons, what are we going to do? :rolleyes: I like healthy food. I am glad knowing certain things I eat are good for me. It is a great feeling. Mom puts more transfats in her body than you could possibly imagine. She whines about having no grandchildren, but at this point, she is not going to be around to see them anyway!

I am not a huge liver person, but bacon I can do. I miss BLTs. I have not had one of those in a long time! Bacon is also terrific on club sandwiches. There is a place called Pie Pan we used to go to, and they had the best turkey club you ever ate!

I better get my glasses on Tuesday! If not, I will have to go another week without being able to see well. Those old glasses just cannot cut it anymore. It has been more than two years since I have seen an eye doctor. I hope to get more contacts later. I have used them sparingly from the last time, so I still have some left. I see great with them, but not with my old glasses.

Sincerely,

Jin

AndreaB Contributor
AndreaB
Posted
My mom is going to mix it in with ground turkey and make it like a meat sauce to go over pasta

This wouldn't be too bad......still don't think you can disquise liver though.

(only, I can't have them together...I have to wait 30 min. to be able to eat the pasta!!!! :angry:)

This would not be so good. I would think the pasta would help it go down......then again, maybe not. :P

You pay a lot of money to get them done, but it does not matter. Those stupid things can still move back. The wisdom teeth can definitely put your teeth out of alignment again. My best friend had to get hers out for the same reason. She had braces for four years prior to getting her wisdom teeth.

My wisdom teeth moved my straightened teeth back out of alignment on the bottom teeth. I'm not sure how long after I got braces off that that happened though.

CarlaB Enthusiast
CarlaB
Posted

Kassandra, can you eat spaghetti squash? In my properly combining days, I'd use it in place of spaghetti if I was eating meat. ;)

melmak5 Contributor
melmak5
Posted

Kassandra - pate might be an option to get liver into your body, its much tastier (although more expensive), not all liver is disgusting and I think eating it mixed in with other things would make it more tolerable

Jin - The Glucerna apparently was a 1-time thing, the next day I tried it and regurgitated it

I am back to the hypoallergenic baby formula that tastes awful

I have not tried the gelatin because I cannot mix it with anything (besides broth) and the idea of aspic grosses me out, but thank you for the suggestion - I have been making soups from scratch, so my gelatin consumption is up

melmak5 Contributor
melmak5
Posted

Dear Gycolax,

I forgot how amazing you are. Sure you taste like plastic, and it lingers and lingers long after you go down the hatch. I had lost hope in you and your powers, but then I realized that 24-48 hours is your window, and boy do you work magic.

I hope we don't need to be friends for long, but for right now I would hug you if I could.

xoxo,

Kristina

NoGluGirl Contributor
NoGluGirl
Posted

Dear Andrea,

It is difficult to say when your teeth shifted. My best friend had her braces off for about a year, and then the wisdom teeth came in. I think her dentist got them out before they did anything to throw them out of alignment. Had they stayed in there, that would have been another story!

I am just at a loss as to what to do. I may have Lyme, and worry cavitations would result if my wisdom teeth are taken out. The overcrowding makes my head feel like it is in a vice most of the time. This is such a frustrating position to be stuck in! Dentists are always keen on getting them out, but they do not understand my health issues.

Dear Carla,

I have not tried spaghetti squash yet. I want to, but just have not gotten to get some. Maybe I could get some this week. After I go out tomorrow, on my way home, I might be able to pick some up. I need a pumpkin anyway! I did not want to carve my pumpkin too soon, because they get smashed or rot before the actual holiday.

Dear Kristina,

Pate might be good. I have never had it. Being a poor person, you do not get to taste those things much. Caviar is another thing I have never tasted. I am not sure I would like it anyway. Still, it would be nice to know that I could afford it in the event I chose to taste it.

I am so sorry you could not tolerate the Glucerna. My system is just like yours. One day, I eat something and it does fine. The next day, I drink or eat it, and I get horribly sick. I have noticed as long as I do not eat the same thing on consecutive days, I do not tend to react to it. If I eat chili on Wednesday, I can eat it again Sunday or Saturday and I am fine.

ROTFLMAO! Your letter is like what I would have written to Sustecal years ago. I had to eat it every day. I got so tired of it, my parents actually had to start getting creative. They did everything from cutting up miniature Reese's cups in it, to adding flavored extracts. At least now I know why I had such a hard time eating when I was a child.

Sincerely,

Jin

melmak5 Contributor
melmak5
Posted

Yes pate it is an "haute" food, but its also from the school of "using the whole animal" as with other traditions of offal (which where often made from poor/cheap pieces of organ meat).

The key with pate is texture. You need a food processor that is powerful so you get a smooth finish to the product. Many include cream, but making yourself, you can omit it if you cannot tolerate it. Instead you can add wine/brandy/water or stock.

NoGluGirl Contributor
NoGluGirl
Posted

Dear Kristina,

I have a Magic Bullet! That is a great blender! You have to be careful with it, because it will liquify things you are trying to chop. I did not realize liver was so cheap. I do not believe in wasting food. The Chinese are like that as well. They often eat braised chicken livers. My father likes the gizzards fried.

Sincerely,

Jin

melmak5 Contributor
melmak5
Posted

You can totally make pate!

Big trick is making sure to tightly cover the made pate with plastic wrap. Air (specifically oxygen) will discolor the pate.

Again, I have never made it, but its really easy and good way to flavor livers, which can be a little funky.

You can also treat them like kidneys and soak them in milk and then water to help clean them out.

For those suffering from iron "issues" have you tried collard greens and/or kale?

Dear Kristina,

I have a Magic Bullet! That is a great blender! You have to be careful with it, because it will liquify things you are trying to chop. I did not realize liver was so cheap. I do not believe in wasting food. The Chinese are like that as well. They often eat braised chicken livers. My father likes the gizzards fried.

Sincerely,

Jin

confusedks Enthusiast
confusedks
Posted

Kristina,

I love your letter!!! LOL!!! :lol: I have tried dark leafy veggies, but they don't turn into ferritin in my body. The issue is that I have a good amount of iron, it's just not turning into ferritin...it's not metabolizing. I have also tried pate, and I think it is digsusting!

Carla,

I am going to try spaghetti squash...never thought of that! Thank you!

Everyone,

I am sitting in my room with my door closed and a towel between the floor and my door so the NASTY liver smell doesn't seep in! :ph34r: I am worried though! Uh oh...I can smell garlic and onions!! AHHHHHH!!!!

Also, I just discovered that there are more emoticons than the ones when you click the smiley face! :blink::wacko::wub:-_-^_^:mellow:

COOL!!!!!!!!!!!!

Kassandra :)

CarlaB Enthusiast
CarlaB
Posted
I am sitting in my room with my door closed and a towel between the floor and my door so the NASTY liver smell doesn't seep in! :ph34r: I am worried though! Uh oh...I can smell garlic and onions!! AHHHHHH!!!!

You're hiding from the smell of your dinner? :lol:

I feel sorry for you having to eat it, but I also feel sorry for your mom having to cook it! LOL

AndreaB Contributor
AndreaB
Posted
You're hiding from the smell of your dinner? :lol:

I feel sorry for you having to eat it, but I also feel sorry for your mom having to cook it! LOL

I'm being lazy.......ditto what she said. :P

What if her mother likes liver?

truthsearcher Rookie
truthsearcher
Posted

Hi.

I love liver and onions

But if I didn't I would freeze the liver and cut small enough pieces that I could swallow like pills.

I read this on a yahoo candida site. Because it is frozen there is little to no smell.

And if I remember right the iron is absorbed more the rawer the liver is. I wouldn't have a problem doing this if I knew the source of the liver. I always get my meat from my organic farmer.

hth

TS

happygirl Collaborator
happygirl
Posted

Particularly interesting

Am J Clin Pathol. 2003 Oct;120(4):554-9

Babesiosis. Two atypical cases from Minnesota and a review.

Setty S, Khalil Z, Schori P, Azar M, Ferrieri P.

Department of Laboratory Medicine and Pathology, University of Minnesota Medical School, Minneapolis, MN, USA.

We present 2 atypical cases of babesiosis and a review of babesiosis.

The first patient was a 72-year-old man with an intact spleen, who had marked intravascular hemolysis. His RBCs were parasitized heavily with trophozoites of Babesia, and he had a large number of extracellular aggregates of Babesia.

The infection did not respond to oral antibiotic therapy, and he required an RBC exchange transfusion.

The second patient was a 29-year-old man who had undergone splenectomy and who had multiple episodes of fever and gastrointestinal symptoms for 4 months, with partial response to antibiotics. Thin smears revealed both intraerythrocytic and extraerythrocytic forms in very low numbers. The infection responded promptly to clindamycin and quinine therapy.

The varying clinical manifestations, from acute to chronic, at a wide range of ages and often the difficulty of detection by routine blood smears make it necessary that a high index of clinical suspicion be present for prompt diagnosis.

With increasing numbers of cases of transfusion-transmitted babesiosis being reported, protection of the blood supply is essential.

PMID: 14560566 [PubMed - indexed for MEDLINE]

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I came across this story which again clearly shows that mercury is a factor in Autism...even though in most cases the mercury is not showing up in hair and urine in the initial tests.

The oceans of tears that I cried and the hours that I spent trying to figure out what was happening to my son are no different than that of any other parent in the same situation.

The only difference was that I was one of only a 190 doctors through out the US board certified in clinical metal toxicology. And if this was metal related, I should know how to fix this problem. I tested him and re-tested him and tested him again, searching for mercury. Slides # 23 to 27 show the results of my son

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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