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    Do you have questions about celiac disease or the gluten-free diet?

scotty

I Don't Know

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i dont know what else to try. i dont know where else to go. i dont know what tests to take. i dont know what doctors to ask. i mean as much negativity and as much certainty that these specialists don't have a clue--would it not be in my best interest to come here for advice? i dont know what is bothering me. i have been through everything. Nothing consistently works. i dont know what to try next or moreover what to eliminate next. i dont know if i will make it worse. i don't know how i can cleanse again like i did before considering that everything i try contributes to my candida in some waay at least it does not help me. the only thing that remotely works at the moment is quinoa which is just really giving me the internal ithces but it is the only thing that is not getting to me. and i can't even say that much...i honestly dont know what to say. i dont want to give the wrong impression here. but something is not right. i ve tried rotation. and ive tried caveman. and ive tried meats and i've tried veggies. eventually they dont work. i cook everyting. i eat small portions. i eat tremendously too. i drink bottled water. i'm very careful. i use baking soda. i use mineral salts. i can't imagine what i will be eating for the rest of my life as i keep running out of foods. i know what to avoid. everything!!! i can't imagine that i will just heal one day--not like this--i dont know but i dont think my body will heal if i keep putting in it that which irritates it, but i am using all safe foods!!!! very limited. i'm using every trick that is supposed to help, it does so many diferent things i dont know which one to explain.

i guess i dont know how to correctly get a few more responses and develop a good thread; so i apologize for repeating this, but i really feel this site is my only logical hope and would like to not fall to the back pages with my posts as they always do. i really feel that i can find someone to help if i just keep myself out front, no matter how many "parts" it takes. i have always believed in timing and situation; so i am going to force it.

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i have tried elimination. i had to cleanse with meats and veggies. i can't do fruit! i have rotated and gone through eating things days straight to get an idea of what will happen. maybe i am too critical but everything bothers enough that i dont want to eat anything. i just want something that wont bother and i can heal cuz...

let me try to expand on what i said in my other post

recent concerns: red hatches--they appear below my chest. on my sides, dry red skin, almost itchy or irritated, like a face just raised off a pillow in the afternoon. that concerns me. it comes here and there and does not seem consistent with anything i eat; like it does not happen right away or everytime. sometimes it is more than others, more spread. seems to come around night time i guess but has come during the days, has come continually after certain foods, but i have to eat something here...

other symptom: urination. i avoid many many foods cuz they "spike" my bladder so i have to just relieve myself about every 90 minutes. usually i can tell when something does not agree. i measure it this way. i notice that suddenly i am going more. suddenly i cannot control it, suddenly it is pinching me to go. i almost have to wait til the pinching contractions subside before i can actually get to the bathroom. not that it wont come out, but that i dont want to have an accident cuz if i just move in anyway i may lose it. things that have been working, my limited foods, are now causing this. it's usually pretty easy: i figure out what is causing it and cut it out. BUT i'm running out of things to get rid of though. its a hardness around my bladder, its a malabsorption i can feel not getting into my system but going right to my urine.

some foods floor me: seems anythign with vitamins--like if the nutritional facts have them listed and all...i mean it wastes me to the point i am nearly collpasing; same with beans, nuts, lentils, fruits, even veggies. its funny then things like this lettuce (romaine, organic) gives me energy like a shot of sugar or energy drink, but next thing i know i fell like i have been glutned from it. how can i cleanse and go caveman, which had worked real well once, when these things make me vacant and so pale, i get tingly, lightheaded, pins and needles extremities, those little black and white spots, lethargic, ravenous

i have alternating tan and green poo; depends on what i have been eating. lets say i go with caveman i start to get burny, seapy and runny inside, like reflux all the way through, green poo; lets say i eat carbs--i get full at first and feel good, but then i get the tan poo, fluffy or frothy, nice pieces, but soooooo much

i can go so many directions. i can't say these are it and exactly what happens everytime. it seems if i have a nice D in the morning then usually i have a decent day cuz i am starving for nutrients or something when i stop having D in the morning i get uncomfortable feelings, like starvations eating me when i know my bowels are full of poop. i eat and feel it right through, pee it out instantly and just feel vacant. i always get tempted to eat some nuts or beans something that will flush it out, but that means weeding out the sluggish feelings the stuff brings again.

meats recently, i have run out. maybe fish still works it is hard to tell right now. but quite a few fish won't i've tried. veggies 3-4 months ago, but now maybe caulflower. like i said they are giving me hard sensations and not providing energy just making me pee. i have even tried to go back to ones that were bothering to see if i could rotate them; one day i get. and i think they will work, but after they get through i dont know what to eat the next day.

maybe this all seems normal under these circumstances and i am just healing, but i don't know how i am going to heal without anymore foods. i am convinced i cannot eat the same thing over and over until one day i am healed. i'm pretty sure i need to feed that healing; but i dont know what to eat over and over. if i keep screwing it up and having violent morings waking me up with D...theres no way!!!!

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I really feel for you, but I don't know what to advise beyond sticking to things that don't make you sick (or make you the least sick anyway).

Are you taking any medicines or supplements you might be reacting to?

Have you tried probiotics?

If you haven't already, I strongly urge you to have your blood sugar checked. I don't know if this can affect your BMs. But a number of your symptoms (frequent urination, dry itchy skin, weakness, tingling in your extremities) are symptoms of diabetes.

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Have you been diagnosed with celiac disease?

How long have you been gluten-free?

So, all your problems are digestive in nature?

Do you have any other symptoms?

If you are drinking enough water, urinating even every hour is a good thing. Does it hurt when you urinate? Does it burn? That can be a sign of infection.

Do you have candida, you mentioned it, but do you know for sure you have it?

A couple things to research are bacterial dysbiosis and parasites. A good site for information/treatment of parasites is www.humaworm.com.

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I really feel for you, but I don't know what to advise beyond sticking to things that don't make you sick (or make you the least sick anyway).

Are you taking any medicines or supplements you might be reacting to?

Have you tried probiotics?

If you haven't already, I strongly urge you to have your blood sugar checked. I don't know if this can affect your BMs. But a number of your symptoms (frequent urination, dry itchy skin, weakness, tingling in your extremities) are symptoms of diabetes.

i dont like meds i have never had success, most are rather uncomfortable; the side effects are worse than the pain, and probiotics worked when i first went gluten-free; now they will for one day if i need to clenase you know, but too much (like 3 days in a row) and then i get that hard feeling in my bowels from them so i have to pee and pee all day

i hav had my blood sugar checked and i'm going to do it again. that was a couple years ago. i have the tools in the house here....might as well give it another go though it is always perfect

i'm trying to stick with what works but i keep getting messed up. like tuna was working and now it does not i can't figure it out; it like gives me candida?????

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"Have you been diagnosed with celiac disease?"

no. i just got insurance and tests will come. in fact, enterolab is in the mail...lets say i know enough that is has been my best attempt at recovery

"How long have you been gluten-free?"

8 months?...since 04/07

"So, all your problems are digestive in nature?"

they seem to stem from digestive problems not sure how to answer that. i mean if my guts did not always feel pulverized and loose and painful and like everything passes by then, like they are coated or destroyed...like they are dead but somehow the rest of me is living...yes i think so to answer the question

"Do you have any other symptoms?"

i am ususally pretty healthy it is weird. like i have not vomited since i stopped drinking 3-4 years ago. maybe cuz i D all out. i dont get colds. i get sore throats though. i used to get real mucusy if that is a word. my legs are quite weak and my feet and calves have a hard time getting warm (right now esp.)

"If you are drinking enough water, urinating even every hour is a good thing. Does it hurt when you urinate? Does it burn? That can be a sign of infection."

ok it does get burny, does strain; not difficult to pass but how do i explain it 'sore' that is it i think, like raw maybe, overused...? oh----in the recent months i have had my right testicle surrounded by something, like fluid; has gone away

"Do you have candida, you mentioned it, but do you know for sure you have it?"

oh yeah white tongue, had major rash on my legs and genital area before goign gluten-free, my legs swelled (really need to put this in my profile thing) i could not walk or get up and down stairs my whole face or head was clogged with it--thats why i say, i think i need to cleanse right at the moment due to a series of mishaps or whatver is going on; i am not doing good with cutting carbs but thats cuz of the knowing that veggies just burn through just make me lightheaded vacant

A couple things to research are bacterial dysbiosis and parasites. A good site for information/treatment of parasites is www.humaworm.com.---ok thanks a bunch; i have never heard of dysbosis; and parasites could be a thing to consider but would never have thought of that; will see if i have any connections. it definetly seems like infection or something i can't shake out of me, or something is broken from years of damage

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Scotty,

You mentioned brainfog on your previous thread. Is that a constant problem for you? Do you feel like your memory is impaired since you became ill?

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maybe this all seems normal under these circumstances and i am just healing, but i don't know how i am going to heal without anymore foods. i am convinced i cannot eat the same thing over and over until one day i am healed. i'm pretty sure i need to feed that healing; but i dont know what to eat over and over. if i keep screwing it up and having violent morings waking me up with D...theres no way!!!!

It sounds like you have leaky gut....which is why you've become reactive to so many foods. You've most likely developed gut infections...as Carla said. Those infections will allow for the gut to remain leaky as long as they are left untreated. In that case no matter what diet you try you will still have ongoing symptoms and the list of "safe" foods will be very short.

You might have underlying issues which have left you susceptible to parasites and/or yeast overgrowth.....or it may have been the undiagnosed Celiac Disease (if you have it) that put a strain on your immune system.

Either way....to me it sounds like infection.

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i have not vomited since i stopped drinking 3-4 years ago.

Stopped drinking in large quantities? Have you had your liver/kidneys checked?

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It sounds like infections to me, too.

I would specifically get checked for a bladder infection. I think you have more than *just* a bladder infection going on, but if you have a bladder/urinary tract infection, you want to get it treated now .... you definitely don't want to end up with a kidney infection. The urination symptoms sound pretty classic for a urinary tract infection ... take it from someone who's had their share. <_<

To test for a urinary tract infection, they test the urine. It's an easy test your PCP can do.

Also Google bacterial dysbiosis .... it could be this type of infection that has caused your leaky gut and multiple symptoms.

You stopped drinking .... do you have an intolerance to alcohol? Does it make you ill? I ask because that is a classic symptom of Lyme Disease. You don't necessarily sound like you have Lyme, but that is a classic symptom, and Lyme can cause major GI trouble.

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Scotty,

You mentioned brainfog on your previous thread. Is that a constant problem for you? Do you feel like your memory is impaired since you became ill?

yes. i really have difficult explaining things like processing the right words...it's easy on here you got all day to come up with one word, but out in reality i tend to be slow, dreamy, seraching; sometimes i get working right and i'm the most logical thing on the planet; everything makes sense and is clear

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Scotty

I don't have anything to sugggest, Carla and Rachel are very good with this topic. I just hope you get to the root of your problem and feel better.

D.

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Stopped drinking in large quantities? Have you had your liver/kidneys checked?

i had blood work done not sure what they all tested for--at the time it was for anemia--was fine. how do they check for problems in these areas.

You stopped drinking .... do you have an intolerance to alcohol? Does it make you ill? I ask because that is a classic symptom of Lyme Disease. You don't necessarily sound like you have Lyme, but that is a classic symptom, and Lyme can cause major GI trouble.

to answer the drinking questions, i stopped becaus of the gut rot it gave me not to mention the terrible hangovers, the dehydrated feelings the usual awful feeling from drinking. i did not want to come across as that i used to be this alcoholic; sorry if it did...i just wanted to make it a point that i don't really get sick per say in the way i think of getting sick; when i say i been sick to people i mean i am loose with D; maybe D that is not planning on coming out. liquid insides, i know i have leaky gut, but i thought i was on my way out of it. and for the record i had problems before i started drinking. it was a teenage thing; then a college thing, though it was wasting me...i guess it deos make me ill, recently assumed it was the barley, the yeast...you know

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I didn't take it as having a drinking problem .... I can't tolerate alcohol, neither can Rachel. Though the details of Rachel's and my health problems differ, we have similarities, too. One being Lyme ... Lyme is my primary player, it's secondary for Rachel. Heavy metals is more of a primary problem for Rachel, and a secondary for me.

Anyway, people with Lyme have a difficulty with alcohol. You might check out this thread to see how many of the other symptoms you have. http://www.glutenfreeforum.com/index.php?showtopic=36163

I also have that problem with word recall .... or I used to anyway, prior to treatment. It's like when I was learning Spanish and I knew what I wanted to say, but couldn't remember the word for it ... except it was English. That is a sign of toxicity .... neuro-toxins. It is a symptom of Lyme Disease, but other toxins can cause it as well.

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I didn't take it as having a drinking problem .... I can't tolerate alcohol, neither can Rachel. Though the details of Rachel's and my health problems differ, we have similarities, too. One being Lyme ... Lyme is my primary player, it's secondary for Rachel. Heavy metals is more of a primary problem for Rachel, and a secondary for me.

Anyway, people with Lyme have a difficulty with alcohol. You might check out this thread to see how many of the other symptoms you have. http://www.glutenfreeforum.com/index.php?showtopic=36163

I also have that problem with word recall .... or I used to anyway, prior to treatment. It's like when I was learning Spanish and I knew what I wanted to say, but couldn't remember the word for it ... except it was English. That is a sign of toxicity .... neuro-toxins. It is a symptom of Lyme Disease, but other toxins can cause it as well.

i will check out the thread and all. maybe i should before i answer, but i will do both. what i am wondering now is how to treat this infections or if it is Lymes. how do i cleanse when everything makes it worse. i mean most veggies really take the blood out of my head feeling. most pills of anything wether it be probiotic or pau d'arco or grapefruitseed extract; most tear me up and really make it worse it seems. it becomes unbearable after about 3 or 4 days. i mean at first really boosts me. say, probiotics...can feel flush warm all through but then i dont feel it anymore and then i start getting it going the other way on me like my foods.

ok-checking the thread now thanks

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Scotty, you really need to know what you are treating to be able to treat ... with your current regimens, you are just guessing.

Here's an example .... grapefruit seed extract will hit Lyme Disease, so if you were to have Lyme Disease, this could stir it up as it hits the more dormant form making it more active. I take it, but if I take too much, it knocks me on my butt!

So, read the other thread, and see if it's a fit. If it's not, we'll keep talking. ;) Well, if it is, I guess we'll keep talking, too. :P

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ok i read it real quick...and i took as much as i could in 5 minutes. off the top of my head i do recoginze innumerous symptoms but i seem to do that with every possibility you know. what immediately stands out is i dont ever remember a tick bite or instance where i was just completely sick for an extended period. like i said i have always been pretty strongly immuned. i dont know from what i read if that means a difference. i never really had rashy like problems until about the end of my 2 year run with IBS and ungodly amounts of rice rice rice day in and day out as the utmost thing i was eating--bad idea. i got rashes i got candida (i konw now) i got swelled legs. since i went gluten free i have had less dry skin all over, which is the only rash like symptoms i have had throughout my life. but gluten-free has brought up the red bellies when eat something not agreeable and have D days and days. do you have to have a bite to get Lyme?

mostly i just recognized eating things throughout my life as painful and not comfortable, not absorbing as energy like it should.

i need tests obviously. enterolab is on the way. going to make a doctor's appt but not sure what direction to go. everything he ever wants to do just costs me money and tells me nothign. though CT scan and bloodwork (for iron and anemia levels, bloodsugar...can they look for anything when they draw blood or do certain screens require certain requests-i'll say?), though those things i guess are important.

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Half the people don't remember a tick bite. I never had the rash, but do remember the bites. I never remember the initial illness. So, the symptom list is the most important thing.

I never had rashes until a few years ago .... also never had joint pain. My primary symptom was fatigue and GI stuff, with some cognitive issues .... until I took a turn for the worse years later.

When you have some time, read through it again. How many of the symptoms on the list did you have?

The reason you can look at various symptoms lists and it sounds like what you have is that all these systemic diseases (celiac, Lyme, etc.) all affect the whole body, so have similar symptoms.

There are just a few things you said that stand out as indicating infection ....

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OK i took a closer and could possibly agree with all 75!!! but i remember something now....

last year year and a half ago i got wicked pains in my thighs as my feet were begining to swell on the top. i mean intense burning or soreness or i cant explain and do not remember fully. keep in mind this was the heart of my rice rice rice here--i remember though some spots that surfaced, like bites. i have scar still from one in my midthigh. i completely forgot... just passed it off with everything else 'oh now what the hell is this. here we go with this thing whatever..' i said and all. it does not explain my youth however?????? but it was a wicked thing--------------ok ok ok i got it

once (2 1/2 years maybe) i got this sort of blister on my tongue. a firey hard airbubble thing really quite painful bout the size of a pinpoint that has swelled right. it went away. god just make this go away thanks :) story of my life. these very same things surfaced on my legs but raised out of control. they turned into the most painful scabby hard can hardly move my legs later swelling my entire legs like oversized balloon snakes.........still does not explain my awful digestive youth; but does this sound like a bite.

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Not really, actually. I wish I could give you a clear answer.

However, I have to say, that after being on the Lyme message boards for a year, there is NO symptom with Lyme that would surprise me.

They say if you have over 20 symptoms on that list you are a likely candidate for Lyme. I would definitely look into it. To find a Lyme literate physician, you can post on Lymenet under seeking doctors. Or if you want to go to NY, I can send you the name of mine.

There is a lot of good info on diagnosis and treatment at www.ilads.org. There are two sets of guidelines .... I really like Dr. B's diagnostic hints. It's long .... I've printed it out .... it's very helpful.

Remember, a deer tick is as big as the period at the end of this sentence .... it's no surprise that most don't remember being bitten.

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Not really, actually. I wish I could give you a clear answer.

However, I have to say, that after being on the Lyme message boards for a year, there is NO symptom with Lyme that would surprise me.

They say if you have over 20 symptoms on that list you are a likely candidate for Lyme. I would definitely look into it. To find a Lyme literate physician, you can post on Lymenet under seeking doctors. Or if you want to go to NY, I can send you the name of mine.

There is a lot of good info on diagnosis and treatment at www.ilads.org. There are two sets of guidelines .... I really like Dr. B's diagnostic hints. It's long .... I've printed it out .... it's very helpful.

Remember, a deer tick is as big as the period at the end of this sentence .... it's no surprise that most don't remember being bitten.

OK so you have to be bitten in order to have Lyme? am i correct on that?

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Yes, but keep in mind, over half don't remember being bitten .... and you don't have to live in an endemic area -- I was bitten in an area considered "no risk" by the CDC.

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Yes, but keep in mind, over half don't remember being bitten .... and you don't have to live in an endemic area -- I was bitten in an area considered "no risk" by the CDC.

OK so what is the endemic area? sorry if i am not reserching myself at the moment but i am balancing this conversation with work. i will take great consideration to google google googl when i get home. i think you might be onto something. appreciating the help with impossible gratuity (however these :D never hurt). do you think it could be anything else why we are breaking it down?

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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