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Rachel--24

Omg...i Might Be On To Something

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Rachel.

Well everyone had kfc and i had an fruit salad lol. I was sitting there thinking how good all of their food tasted. But i was an good girl and just kept eating my fruit lol. I was even telling them all, one day i will be eating like all of you, of course im not 100 percent on the gluten, but heck if i could add caesin and soy in, could eat more normal lol

I take it, you are allowed to wear pink this month at work. It isnt like that here lol

Its 10 pm here and everyone in the house is asleep but me, what is wrong with this picture lol

paula

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Rachel this all makes sense to me.

Sherry,

I'm gonna try to see if I can find any info. on that but I dont think there's really been alot of research or studies on this.

It makes alot of sense to me though. It seems like when certain enzymes are inhibited by certain things...or when the body is dealing with an overwhelming amount of substances because of impaired detoxification...then sensitivities to certain food components becomes an issue.

The recent studies have definately shown that to be true regarding phenols and the PST enzyme. If you have bacteria producing large amounts of phenolic compounds...then the enzyme is dealing with more than it can handle....especially if you're also eating foods that contain high amounts of phenols. Then there's even less available for detoxing hormones and neurotransmitters....and you start having problems with all of these things.

Theres alot of things which can inhibit the enzyme....and some people may have weaker enzymes to begin with.

It seems logical that the same would be true of other enzymes....such as DPP IV. So if there's a shortage.....the more things you put into your body that require this enzyme....the less you have available to deal with the things that are already in your body (like cytokines from chronic infection).

A constant supply of gluten and casein in the diet could tie up the enzyme....and it seems like it could have an effect on the immune system for people with Lyme and such. I would imagine more inflammation from the accumulation of cytokines as well.

I think its all a vicious cycle...so many factors become involved.

Taking out gluten and casein could result in big improvement if the body is able to detox/cope better as a result....however, the loss of nutrients then becomes an issue (if not properly supplemented) and then other problems develop because of that. DPP IV function may have improved....but then something else might not be functioning as well (due to loss of nutrients) and then you start having problems from that ( sensitivities to other foods etc.).

I think one thing leads to another and in each person it varies greatly.

I dunno.....I'm just thinking out loud but I will try to see if I can learn anything about this stuff.

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Rachel.

Well everyone had kfc and i had an fruit salad lol. I was sitting there thinking how good all of their food tasted. But i was an good girl and just kept eating my fruit lol.

KFC.....yummy!! I wonder if I'll ever eat it again. :unsure:

I'm glad you were a good girl...sticking to your fruit sald. :)

Way too much junk in KFC....I think my body might do better with a Big Mac.

Or maybe I'm just trying to convince myself that Big Macs arent so bad. :lol:

I'm glad you felt good and enjoyed your day. :)

I take it, you are allowed to wear pink this month at work. It isnt like that here lol

Really...they dont do that over there?? :huh:

Yeah....we can wear pink all month. We did the same for prostate cancer....but it wasnt for a whole month. We wore blue for a few days.

Sometimes we have themes.....like during employee appreciation week.....each day is a different theme.

Last year the people who wore pink also got to wear jeans. Not sure if its the same this year.....if it is....I'll change into jeans on my lunch break. :)

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It makes alot of sense to me though. It seems like when certain enzymes are inhibited by certain things...or when the body is dealing with an overwhelming amount of substances because of impaired detoxification...then sensitivities to certain food components becomes an issue.

I think its all a vicious cycle...so many factors become involved.

Taking out gluten and casein could result in big improvement if the body is able to detox/cope better as a result....however, the loss of nutrients then becomes an issue (if not properly supplemented) and then other problems develop because of that. DPP IV function may have improved....but then something else might not be functioning as well (due to loss of nutrients) and then you start having problems from that ( sensitivities to other foods etc.).

I think one thing leads to another and in each person it varies greatly.

Yes, and don't forget all the gut components to this picture. Many digestive enzymes, the balance of flora, impact on immune system, development of toxic compounds by bad bacteria, plus in general the ability to excrete.

Like with me, I can't digest most carbs, don't make much bile apparently, take mucho heavy pancreatic enzymes, have lots of freeloaders in the gut (fortunately less than before, LOL), and don't absorb nutrients do to all the damage. I have a lot of strikes against me before even considering genetic weakness in an enzyme system.

I also wonder if a person has been ill for a long time, does the body in some way adapt to this compromised system and have a hard time restoring back to normal (ie abnormal has become normal for this person).

Sherry

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Thanks for all your thoughts and prayers! That was a ROUGH surgery!!! Basically, I woke up from surgery with 4 staples in my stomach and just having had my GB removed, and NO PAIN MEDS!!!! AHHH!

At first they didn't believe me and thought that I was a narcotic pain med abuser, but once my heart rate was in the 140's, they realized I wasn't hysterically crying for nothing. Once they finally were able to get me out of screaming pain, I went to recovery and the nurse told me I'm lucky I didn't die because the dose of the meds they gave me was so high people's lungs usually clamp in shock! :o

Then I was in the observation unit with a 24 hour nurse in the room, and they were giving me morphine shots, every couple hours. I got 6 shots in each arm :(. My arms still are sore! ;)

When the surgeon came on rounds yesterday morning, I couldn't talk without crying because the pain was so bad. I was supposed to go home but there was no way...and he saw it. He upped the pain meds because the morphine wasn't cutting it. He gave me orders for 2 percoset every 4 hours along with morphine shots every 2 hours AND IV Torridol every 6 hours. That finally took the edge off.

I am in less pain now, but it's still no walk in the park. I haven't been able to eat more than about 700 cals a day which sucks because I'm losing weight fast and it hurts a lot to eat. I'm supposedly going to the GI dr first thing in the morning because he said the kind of pain I'm having isn't normal for post op. I'm still having pain as if I'm having a gall stone attack, but obviously there's no stones! :lol: The GI wants to figure out what is causing my pain, so we'll see what he says.

He was really sweet and called to see how I was doing when I was in the hospital. :)

I will keep you all updated as I can. It's hard for me to sit at the computer, so I might just email Carla updates from my phone in bed so she can post for me. :P

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Didn't I tell you guys not to talk alot this weekend. :angry::lol:

HAHAH!!! I could just picture your mom reading alone, then jumping up out of her seat to go get the towel from the bathroom and then hide it from you..HAHA!!

Bad Rachel. :angry:

Ditto :lol:

Glad you're noticing improvement. Detoxing is definately a slow process....I think its a good sign that the rash is clearing up. :)

Ditto

A little tired because I just went to the Mall with Chloe for a Homecoming dress .... shoes .... jeans .... we were there for hours, so I think anyone would be tired after that, LOL.

Shopping......something we did a lot of yesterday (Saturday). I got to Seattle around 12:30 and was told my hair appointment was at 1:15 and we had to get going. We didn't get home til around 10:30. Had a pedicure (blue nails :) ). Went to dinner at the Melting Pot which took 2 1/2 hours from start to finish. Good though. :)

Today was more laid back, but still running around. Got salads for lunch at WF and went to the park to eat. Beautiful weekend over here. I got home around 8:30 tonight. Was ready to go to bed over an hour ago, but T is wide awake, so here I sit. :rolleyes:

I will keep you all updated as I can. It's hard for me to sit at the computer, so I might just email Carla updates from my phone in bed so she can post for me. :P

Thanks for taking the time to update us when you're feeling so poorly. Hope they can pinpoint the pain your having real soon. I'll be looking for updates from Carla. :wub:

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Kassandra,

Wow, seems like you could have had a much smoother and easier time. Very disconcerting about the pain. Are you still in the hospital?

Andrea, sometimes your skype messages take a long time to arrive....weird. Sorry I missed you. Looking forward to hearing more about your new look!

Sherry

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That was awful with the pain, Kassandra. I feel so sorry for you.

I followed a discussion about a similar case on the forum at thyrid.about.com a couple of years ago, where someone who called herself Lindaend (not her real name) had awful pains for a long time and probably several abnormalities hormone-wise and she ended up finding a surgeon who saw cases like hers. He also kept putting such patients on thyroid hormones because it had something to do with it. Usually these patients had been labeled nuts by the other doctors beforehand because they could not find any gallstones or anything wrong.

I do not remember where this doctor was but it should be possible to find the link on the forum. Some days the search functions do not work well.

But I think that in your case the doctors are wondering if the whole thing comes from Lyme.

Also, the body hides iron in infections.

I think I remember someone tested you and it said you have a bleeding in the intestines.

I sent you a link about such an article, where the ferritin went up after starting protone pump inhibitors.

nora

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About teh LDN, it basically does the same thing as worksouts, raising endorphins.

Lots of people could for a long time keep their symptoms and illnesses at bay with exercise.

Then later they could not anymore. LDn does teh same thing I think.

I tried it to see if I have blocking TRAb because my TSH is always low een when not taking enough thyroid hormones, so I always have a fight with doctors. I want my ft4 and ft3 in the upper half of the range like all others, but they cut my dose all teh time so I end up with my 4 and ft3 low. Ft3 even below range. I always get more or less dpressed with such low numbers but the doctors are happy with my TSH and are sending me to psych. Waiting for appointment still, by the way.

I also get fibromyalgia with such low thyroid numbers. Here, fibromyalgia is labeles psych.

i then tried LDN and it took away depression and made fibro much better and the TSH finally went up. Proves for me that I have the blocking TRAb and that one cannot rely on TSH then. Doctor not interested at all, by the way. Says noone can have symptoms before TSH is 8.

LDN lowers antibodies and is potentially useful in anything autoimmune.

nora

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Kassandra, I've been reading about cytokines (as you all know, LOL). Your immune system produces the cytokines which mess up some of your other processes, including that your sensation of pain is higher. So, having more pain than usual could be a function of an over-active immune system. You really have the sensation of pain you are having, but the trauma to your body is the same as what is normal ... you just sense more pain .... if that makes sense .... I believe it's a function of seratonin? Those with inflammatory cytokines have less seratonin?

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That makes sense. In August when I had a colonoscopy I went in feeling pretty out of it from the prep. When they started the IV's (two tries) it about killed me--especially the failed one in the hand :( I was complaining--because usually it hardly phases me. The nurse said that the prep seems to really increase people's sensitivity.

Much smaller scale than Kassandra of course.

Kassandra, I was thinking also about biofeedback and all the ways you can use your mind to deal with pain. Maybe something like that would help.

Sherry

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Good to hear from you Kassandra!!!

I've noticed that surgery tends to set off more "nerve" type pain in me...not sure whether it's the sedation or the actual surgery that does it, but my whole foot is "nerve pain" central right now. Just to touch it slightly sets off a burning type sensation like a horrible sunburn.

After my hysterectomy, when I first came out of the anesthesia in the recovery room, they couldn't give me enough pain meds. I think I got 3 shots within 10 minutes or so, lol. Fortunately that was the worst of it, once that kicked in it pretty well stuck and the normal morphine pump and the oral stuff seemed to keep it manageable but that was almost 8 years ago.

After all of my recent "procedures" I've noticed an increase in that nerve stuff.

After my foot surgery, the double strength Vicodine did nothing!

Makes me a bit nervous about my upcoming surgery... :rolleyes:

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Makes me a bit nervous about my upcoming surgery... :rolleyes:

It would me too.

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I think I heard that it is not uncommon for fibromyalgia patients to have had much pain. ....just wondering.

reas somewhere else that one can use gabapentin for pain after surgery. Lyrica is just a patented form of gabapentin as far as I recollect. Lyrica is used in fibromyalgia patients.

nora

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Kassandra,

Sorry to hear about all that's going on. That's a lot of burden for someone to carry. Good thing your lungs didn't clamp. Your still here and for a good reason too. :)

I know of people who have experienced phantom pain. It's like you had a stored pain in your memory about the gallbladder and your brain or body still might think it's thier so it feels painful, if that makes any sence. Hopefully that's what it is and not something else. I'm sure it's just your body healing itself.

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Nora,

Glad the LDN is helping you. But you say you still feel bad, right? How long have you been on it?

I was looking at the LDN, and the side effects of Naltrexone, and they sound awful.

I don't know that I would want to experiment with that risk unless i knew it was going to help me. Or there was better evidence.

Sounds like it's used a lot in MS patients. Or Fibro. A lot of my symptoms feel like I have blocked lymph flow or drainage in my head and neck glands. A lot of my symptoms are similar to that of people who have had head and neck radiation treatment for cancer or something. Like damage to lymph nodes and stuff. Thats part of it anyway.

But not sure. I would only want to take the LDN if I knew it would help with those symptoms.

-------------DRAMA-----------

So now Im in pain.

I went to my colleges health center on Friday, because the back of my neck has been hurting. A week ago, I couldnt hold my head up straight ( I think it was a strain from lifting at work, and doing situps) so my doctor at OSU ordered 7 neck x rays right then and there, and I did them.

So basically now I am freaking out because I have a sore throat and my neck is all puffed up and I have a headache and dry mouth again!!!! like I did when I got sick, as a side effect from the radiation.

The glands behing my ears and head hurt, and my neck is puffy. All that from cervical x-rays, Im worried that Im worse again! Hopefully the symptoms go away soon. Its not right to be so sensitive.

I wonder if the neck x rays she ordered can screw up my thyroid?

Iam radiation phobic now.

Has anyone else had symptoms from x rays?

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-------------DRAMA-----------

So now Im in pain.

I went to my colleges health center on Friday, because the back of my neck has been hurting. A week ago, I couldnt hold my head up straight ( I think it was a strain from lifting at work, and doing situps) so my doctor at OSU ordered 7 neck x rays right then and there, and I did them.

So basically now I am freaking out because I have a sore throat and my neck is all puffed up and I have a headache and dry mouth again!!!! like I did when I got sick, as a side effect from the radiation.

The glands behing my ears and head hurt, and my neck is puffy. All that from cervical x-rays, Im worried that Im worse again! Hopefully the symptoms go away soon. Its not right to be so sensitive.

I wonder if the neck x rays she ordered can screw up my thyroid?

Iam radiation phobic now.

Has anyone else had symptoms from x rays?

The radiation in the x rays can displace iodine in the thyroid. Can you tolerate Iodine? I take iodine after any x-rays.

If you tolerate it, it can help *mop* up the radiation.

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The radiation in the x rays can displace iodine in the thyroid. Can you tolerate Iodine? I take iodine after any x-rays.

If you tolerate it, it can help *mop* up the radiation.

I've had paradoxical effects with iodine. Sometimes it bothers me, sometimes it doesn't. I dont take it by pill, only from food now, like sushi, salt etc.

I did take half a grain of an armour thryoid a coupple hours after the x rays. (left over from the past) maybe that is why I feel funkier. Im hoping that the armour mopped up some of the rad. I ate some Brazil nuts today which are high in selenium.

Im never getting an x ray of my neck again unless its broken cause I dont want to go through this again. It creates so much anxiety and worry.

What do you mean by displace iodine in the thyroid? Where does it go?

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I think that if one has contrast, it displaces iodine, but not an ordinary x-ray. Then teh rays just go through you.

My problems are due to doctor under-dosing me with thyroid meds so my ft4 and ft3 are too low for me, but the LDN makes me feel mostly normal.

The awful brain fog that started with the celiac thing is 95% gone, only using cell phone against the head brings back brain fog for a while. I am quite sure the LDN helped for the brain fog.

Something else is bothering me: My back hurts towards the morning and turning to the side or lying on stomach hurts more. My guess it is from too low a thyroxine doseage, or what.

I googled hurting in bed and found some postings in fibro forums about that, and two things stood out: one needs a good top matress, I have only a thin one that is less than 1 cm thick, and synthetics in matresses are no-no, and synthethic clothes cause the body to hurt. I tried with a woolen top and it did help until I put it in the laundry. Must wash it and put it back on.

I think I will try to get partner to get a proper top matress, there are two at IKEA that sound good, the latex one and the corn fiber one. The others are synthetic.

I am still waiting for appointment with endo, that is why I just did not up my dose of thyroid meds on my own yet. Doctor thinks dose is perfect since TSH is not 0,02 anymore. ft4 and ft3 were mid-range then and no hyper symptoms. I once tried out what dose made me hyper, and ft4 needed to be well above range before heart rate rose to 80 from 72.

nora

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Good morning everyone,

I woke up with an rash up and down my legs and on my stomach. I have no idea what is going. I think I am allergic to the activated charcoal, cause this has happened one time before.

Paula

who is very stressed out about her health today.

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Paula,

Could it be some kind of detox reaction and not the charcoal itself?

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What do you mean by displace iodine in the thyroid? Where does it go?

I'll try to find some links so you'll have more scientificness behind what I am saying...but have to be when I get off work - really busy today!

Heavy metals, radiation, ect. can displace iodine in the thyroid. Iodine is stored in the thyroid and breast tissue. The blood filters through the thyroid and if iodine is at adequate levels it can kill all sorts of pathogens.

Never has there ever been a greater need for a safe broad band anti-pathogen agent like iodine. Though iodine kills 90 percent of bacteria on the skin within 90 seconds its use as an antibiotic has been ignored. Iodine exhibits activity against bacteria, molds, yeasts, protozoa, and many viruses; indeed, of all antiseptic preparations suitable for direct use on humans and animals and upon tissues, only iodine is capable of killing all classes of pathogens: gram-positive and gram-negative bacteria, mycobacteria, fungi, yeasts, viruses and protozoa. Most bacteria are killed within 15 to 30 seconds of contact.

FACT SHEET ON IODINE

Overview:

Iodine is a trace mineral produced by the body that is essential for normal growth and development. Seventy to eighty percent of iodine is found in the thyroid gland in the neck. The rest is distributed throughout the body, particularly in the ovaries, muscles, and blood. A deficiency of iodine can lead to hypothyroidism (low thyroid hormone levels); symptoms of this condition include sluggishness, weight gain, and sensitivity to temperature changes. In infants and children, hypothyroidism can impair physical and mental development.

I take Iodine a few times per week anyway, but If I get an x-ray, I definately take it on that day.

I'll try to find some more info when i get home - on my home computer.

I have read in many places that our soil is now deficient in iodine and where we once obtained it naturally through certains foods, we now do not. Also, since our diets are not rich in fish and seaweed - we aren't getting it that way.

Good morning everyone,

I woke up with an rash up and down my legs and on my stomach. I have no idea what is going. I think I am allergic to the activated charcoal, cause this has happened one time before.

Paula

who is very stressed out about her health today.

Paula,

Sounds like you are allergic! can you try Chlorella instead?

Sorry that happened!!

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April,

Thanks for the info. on Iodine. :)

I'm glad this is one of the things Dr. P. is looking into. He's holding off on the labtest right now because he's not sure how I'll respond to the iodine tablet.....but iodine deficiency is one of the things on his list for the voodoo lady to look at. ;)

I think theres a real good chance that I need iodine. I remember when I was going through the testing process for Graves and RAI treatment...they did the iodine-uptake test to see how quickly my thyroid was taking in iodine.

They gave me the iodine and about an hour later checked to see how much had been absorbed...and it was pretty much ALL taken up. My thyroid was really overactive...they told me that under normal circumstances only a small portion of the iodine would have been used....but in my case it was rapidly absorbed. There wasnt really any left in my system.

For the radioactive iodine treatment they gave me a very large dose (for someone my size)...because based on the results of my CT scan and the iodine uptake test they determined the dose would need to be high.

Anyways, I'm pretty sure I still have an overactive thyroid (to a lesser degree). I feel there's no way that the RAI could have been completely effective.....because my Armour dose is very small. People who havent undergone RAI take much higher doses than me. Even with my small dose my results are always in the normal range...and this last time my T3 was elevated.

Even when I forget to take my pills (sometimes for long periods) I dont start feeling run down or fatigued. It takes a LONG time without any Armour for me to notice anything....and usually its hairloss.

Once in awhile I still feel kind of "hyper"....so I'm betting that iodine is an issue for me. First, my diet is very restricted...and second, I'm pretty sure my thyroid is still in "overactive mode" at times.

I guess I'll find out soon enough. Prior to seeing Dr. P.....no other doctor has said anything about iodine. This is one of the first things Dr. P. wanted to check me for.

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Kassandra,

Sorry to hear about all that's going on. That's a lot of burden for someone to carry. Good thing your lungs didn't clamp. Your still here and for a good reason too. :)

Ditto. :)

Kassandra, you're in my thoughts and I hope you're feeling less pain today. {{{{{hugs}}}}

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