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Omg...i Might Be On To Something

Rachel--24

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AndreaB Contributor
AndreaB
Posted
The last time I ate was at 8:30pm.

What gives?

I don't know what time you go to bed, but eating to close to bedtime may be a problem as well.

what do you guys use to get omegas?

One of my doctors (the ART person) has my family on Nordic Naturals fish oil.

As far as the mercury, I don't know if it's much of an issue, but we are also taking toxin binders.

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jerseyangel Proficient
jerseyangel
Posted

melmak,

Forgive me for butting in here, but do you eat the cashews regularly? I had horrible reflux after going gluten-free--I even had cardiac testing twice (echocardiogram & holter monitor and then a full on stress echo) because of it. After determining it wasn't my heart, I realized through an elimination diet that it was the legumes I was eating.

Cashews are related and cause me to have reflux--and gas that shoots upward. It literally feels like it could be a heart atttack, so I can understand a bit of what you're going through.

Just a "for what it's worth"--I hear the sadness and desparation in your posts. I went through an extended period of not being able to eat much of anything with out getting sick. It took me 2 years to get to the stage I'm at now--not perfect, but definately better.

If you ever want to PM me, I'm here :)

melmak5 Contributor
melmak5
Posted

Thanks Jerseyangel.

It kills me to be like this. I am not a sad person, I am not a woe-is-me person. I hate this more than I can say because I feel it is eating my life and personality away.

I haven't had cashews in a few weeks, so maybe its them.

I have the overwhelming urge to say f-it and just eat whatever I want because it doesn't seem to matter what I eat, I still feel like crap.

I am not eating any solid food until my barium swallow next week. I just cannot be in that much pain and be able to work.

I don't know how you made it 2 years, seems like a minor miracle.

jerseyangel Proficient
jerseyangel
Posted

melmak,

Good luck next week--I truly hope that they can see what's causing all this. It's so hard, but when you do get a handle on it, things will begin to get better.

Try and hang in there a little longer :) We're all here for you.

Green12 Enthusiast
Green12
Posted
Julie, last year I made the Namaste blondies and added a can of pumpkin to it. It was GREAT! You don't need to make any other adjustments to the recipe.

Carla, I saw your post about this in the Baking section and I actually tried the pumpkin blondies out, pretty good but mine came out a little rubbery (I am baking at high altitude, so I am not sure if that makes a difference).

The spice cake mix with the spices really make a statement, and then the added pumpkin I used made them taste just like these gluten filled pumpkin bars i use to make.

Anyway, off topic, but I am just so happy to have access to the Namaste products - I actually can eat them since they don't have most of the things that bother me.

Donna, great news you don't have to take your allergy shots anymore!

Mia mia, good luck with chelation and your colonic today. You've really done well with all of this, such a trooper. Stay postive :)

Not off the top of my head do I know anything about plant sterols, why do you ask?

Charlie, I am using Carlson cod liver oil for the time being.

I had not heard that about flax oil, do you have a link? I always showed up allergic to it and wondered why, so it's interesting to hear that many others don't do well with it.

melmak, I know you are frustrated, belive me most all of us here have been , some still are, in your shoes. Not being able to eat anything and having violent reactions to all that we ingest is very challenging. I struggled with it for years.

I hope you get some answers at your appt.

CarlaB Enthusiast
CarlaB
Posted
Have you tried lemon juice in hot water? Sounds crazy, but Carla suggested it to me and it really does help.

I'm glad it's working for you. :) I use a whole lemon in room temp water .... but it sounds good in hot water ... like tea.

It is alkalinizing.

Melmak, I'm sorry you're feeling so bad. I had that, too, even up till about a month ago. Severe stomach pain with any food. It wasn't any specific intolerance. Nuts and prunes would have ripped me up! Oddly enough, potato chips (Lays Stax and Ruffles) always settled okay, so I relied on them more than once for calories!

Smoothies (undenatured whey and raspberries) and decaf lattes have gotten me through the last few months calorie wise.

Julie, that's strange about the blondies ... maybe it is the altitude ... here they were really moist!

melmak5 Contributor
melmak5
Posted

Potato chips have been my caloric staple. They are the only thing I have been able to consistently eat.

The prunes are the only fruit I can tolerate (only if stewed) and has been my only source of fiber, so I am worried about given them up, but I think at this point I have to.

I am going to see how long I can do just formula, it makes me bloat, but at least I don't regurgitate it.

My friends are now taking bets on what I have.

So far there are dibs on partially obstructed bowel and bacterial overgrowth not being actually dealt with and still kicking around.

I am not sure what the "prize" will be, but I will think of something for the winner.

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

Melmak,

I'm betting on the cashews. You've had problems with moldy foods and the cashews fit into that category.

If you havent had problems with potato chips or prunes in the past....I'd suspect the cashews first.

Also, I often am fine eating something one day and then start reacting the next day or two as I continue to eat it. I think I have a threshold for most things that I'm reactive to and since I'm not one to "go easy" with the foods....I inevitably cross that threshold every time. :rolleyes:

I know you are frusterated....we've all been there....yet I dont think anyone here would be considered the "woe is me" type. :)

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

Charlie,

Yes...there is concern about mercury in fish oil. I'm pretty sure there are some brands which are tested regularly and free of mercury. I cant recall which brands because I'm not taking any so havent looked into it.

I didnt do well with the hemp oil....hemp seeds and oil were giving me massive headaches....very much like soy does.

I dont seem to do well with anything "plant" related....basically all the healthy stuff. :rolleyes:

I was eating eggs for the omegas but I guess I'm currently "omegaless". :huh:

AndreaB Contributor
AndreaB
Posted

Rachel,

I've cancelled the appointment on the 8th.

I just took some oregano oil......not the tastiest stuff is it? :blink: I'm coming down with a bladder infection (or something like that) and it was one of the things recommended for it. Since it's also good for the candida I figured I'd try it.

Talked to my doctor. I bought some cranberry juice and Braggs apple cider vinegar as well. I tend to be acidic so I figured it would be better to take the acv. Haven't had that yet.

My doctor said if I'm not better when we go in for Seth's 2 year check up, he'll take a sample and run tests....that's in 2 weeks. He's only over here every two weeks. I'm glad he's readily available on the phone though and that he's a holistic md. :)

confusedks Enthusiast
confusedks
Posted

I just wanted to drop in quickly. I got my 504 plan!!!!!!!!!!! Yay!!! Everything went well and now I don't have to feel guilty for being absent from school. They made great accomodations and hopefully it will be really helpful in the future. We are also supposed to be getting lab results for Lyme, and other general stuff, so I will post those later when we get them and I have time.

Kassandra

AndreaB Contributor
AndreaB
Posted
I just wanted to drop in quickly. I got my 504 plan!!!!!!!!!!! Yay!!! Everything went well and now I don't have to feel guilty for being absent from school. They made great accomodations and hopefully it will be really helpful in the future. We are also supposed to be getting lab results for Lyme, and other general stuff, so I will post those later when we get them and I have time.

Kassandra

Great news!!! :D

Can't wait for the update either. :)

CarlaB Enthusiast
CarlaB
Posted

Charlie, I take Arctic Oils Omega Pure ... www.arcticoils.com. I buy them from my LLMD ... I think you have to get them through a doctor.

OmegaPure 600™ Nutritional Supplements is an ultra-pure great taste fish oil professional formula sourced from the arctic waters of Norway.

This highly concentrated and cholesterol free Professional Formula provides 600 mg of omega-3 essential fatty acids per softgel. In order to assure maximum freshness, the oil is stabilized with Vitamin E, as mixed tocopherols, is molecularly distilled and is independently verified to be free of PCBs, heavy metals, and pesticides. EPA and DHA from fish oil promote cardiovascular health by supporting optimal triglyceride and cholesterol levels and reducing platelet aggregation. Fish oil Nutritional Supplements has also been shown to promote optimal joint function and overall brain and nervous system function.

Great news, Kassandra! Chloe has an IEP here in Ohio, and it's a big help. She doesn't miss school from illness, she was having learning disabilities with her lead toxicity and Lyme Disease. It seems to be better now, but that IEP is still a comfort to us both.

confusedks Enthusiast
confusedks
Posted

Thank you! We are very excited too! :D It turns out the Dr.'s office forgot to send the blood work over! :angry: Hopefully we will get them tomorrow though. I realized that I have been really low energy wise since I got my period a few weeks ago. I feel anemic again...sigh. It's such a deep level of exhaustion that I can't seem to catch up, regardless of the fact that I slept 16 (no, that's NOT a typo! :rolleyes:) Friday night. Also, I slept 10 hours Saturday with a 2 hour nap and this same pattern for the last 3-4 days. I can't EVER sleep enough!

On a side note, we have had a lot of brush fires here in LA, and the air quality is terrible! I have had a headache from hell...could this be why? The sky is orange/brown because of the fires. It is pretty bad. I worry about going to school (which is even closer to the fires than our house) since I haven't been since the fires started. I went today (just for the 504 meeting) and I have had a bad headache ever since. Also, are there any natural remedies for headaches? I hate taking advil/mortin all the time.

Kassandra

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

I've cancelled the appointment on the 8th.

Ok...I got a call tonite about the scheduling. They didnt forget to call me this time. :)

I'm scheduled for Dec. 15th. YAY!! :D

I'm always excited to see Amy. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Mia mia, good luck with chelation and your colonic today. You've really done well with all of this, such a trooper. Stay postive :)

Ditto!! The sweetest trooper in Rachelville!! :wub:

Mia....I hope everything went well and that you're feeling ok. :)

Thanks for letting me know about your problems with the vitamin C...I still gotta call the Dr.'s office about that. I was gonna let it slide...but then I read your post. I guess it cant hurt to ask them to leave it out.

Julie and Mia....I owe you each of you a pm. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
On a side note, we have had a lot of brush fires here in LA, and the air quality is terrible! I have had a headache from hell...could this be why? The sky is orange/brown because of the fires. It is pretty bad.

Yeah....the stuff we're getting exposed to from the fires is not good. Just what we need....more exposure to mercury and other pollutants. <_<

Fires is one way that we all get exposed to alot more mercury in the air. When trees and other foilage burn.....they release mercury.

Forests act as mercury traps because mercury in the atmosphere
Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I just wanted to drop in quickly. I got my 504 plan!!!!!!!!!!! Yay!!! Everything went well and now I don't have to feel guilty for being absent from school.

Yay!!!

Congrats Kassandra. I'm glad it all worked out. :)

confusedks Enthusiast
confusedks
Posted

So I researched thyroid problems as I have been gaining weight without changes to my diet, exercise (or lack thereof ;)) and I took a quiz that says I probably have an under active thyroid. Is this something that could be Lyme related? Or is this separate? OR could it just be symptoms that are related to Lyme and not really thyroid?

Kassandra

CarlaB Enthusiast
CarlaB
Posted

I have low thyroid probably because of the Lyme. I started on Armour Thyroid last week. :) Yeah, another thing that can be Lyme related. So can the weight gain. :angry:

AndreaB Contributor
AndreaB
Posted
So I researched thyroid problems as I have been gaining weight without changes to my diet, exercise (or lack thereof ;)) and I took a quiz that says I probably have an under active thyroid. Is this something that could be Lyme related? Or is this separate? OR could it just be symptoms that are related to Lyme and not really thyroid?

Kassandra

Carla already answered but I was going to say I think it can be related. Carla knows much more than me though. :P

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

I have low thyroid cuz the idiot conventional Dr.'s had the answers to all my problems from the start.....just kill my thyroid and everything will be FINE. :blink:

WTF?? :huh:

If only I had listened to my intuition back then...I know I'd be better off right now. :angry:

But yeah....Lyme can cause thyroid problems. Mercury and Lyme both tend to cause thyroid problems....particularly Hypothyroid.

I had the opposite....Hyperthyroid (Graves Disease).

Yeah...I think I'm always gonna be kinda upset about the fact that my thyroid got nuked.

Sorry to go on another rant about that. :rolleyes:

miamia Rookie
miamia
Posted
Ditto!! The sweetest trooper in Rachelville!! :wub:

Mia....I hope everything went well and that you're feeling ok. :)

Thanks for letting me know about your problems with the vitamin C...I still gotta call the Dr.'s office about that. I was gonna let it slide...but then I read your post. I guess it cant hurt to ask them to leave it out.

Julie and Mia....I owe you each of you a pm. :)

Rachel-

I asked for no vit. C yesturday it was definitly better. I still felt off from the DMPS but the colonics helped alot with those symptoms. As opposed to the mineral drip when they do the DMPS they give the Vit. C seperate so its really easy not to get it. The nurse there Denise - actually told me alot of people can react to the Vit. C so maybe we are not freaks for once!!!!

miamia Rookie
miamia
Posted

Ok so the other day when i went for my foot bath i paid for 6 up front which was pricey but ende up saving money then i got home and looked up this one i had thought of ordering - And it cost less then the 6 appts!!!!!!!! I was so mad. So I called yesturday to see if they had already cashed the check and they haden't so I asked them not to and i went ahead and orederd one. Its not a super high tech one but i don't think i really need a super high tech one. I am actually really excited for it becasue I feel like on days when i feel really toxic i will have something I can do about it.

Rachel- I look forward to your PM

Miamia

dlp252 Apprentice
dlp252
Posted

Lyme (and just about everything else) can also suppress the adrenals which has a lot of the same symptoms as low thyroid. I've been tested every which way for thyroid and it always comes out okay, but the adrenals are definitely fatigued because of all this stuff.

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

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      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
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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