Omg...i Might Be On To Something

[Rachel--24]

I love the scientificness! This is a very hard subject to learn, though. This is definately something that interests me since I had some sort of pathway blockage.

Yeah...it is a tough subject...I had to put my "thinking cap" on. Its one of those things that you have to study over and over until it starts making sense.

Its not as bad as math though.

I am also interested in that test and am wondering if it would be right for me. I noticed that if there are certain deficiencies then you are more likely to have an environment friendly for yeast.

I was going to ask you guys what test you might recommend.

I'm doing alot of the biomedical type tests that are used by doctors treating autism. The organic acid test (OAT) is at the top of every list I've seen for essential tests. Same thing with the urine amino acid test that I posted yesterday.

These are the tests commonly used.

Red Blood Cell fatty acid profile test

Urinary amino acids Analysis

Urinary Organic Acids test

93 food IgG mediated sensitivities (including Gluten, Wheat and dairy)

Comprehensive Digestive Stool Analysis

Intestinal Permeability test

Salivary lgA

Thyroid function and iodine level

Functional liver detoxification profile

Serum Homocysteine

Urinary Kryptopyrolles

Plasma sulfate and glutathione

Blood test for Zinc, Cu, Folic Acid, B12, B6 and Magnesium

Hair Mineral analysis to screen for nutritional and heavy metals

Provoked urine challenge for heavy metals

Erythrocyte Glutathione Peroxidase Activity

RAST test for IgE and IgA mediated Food Allergies

Celiac serology

Streptococcus serology for autoimmune antibodies to Strep. bacteria

Genetic Testing

Viral infections

I highlighted the tests that I've done.

I would add Lyme testing to this list.

I would definately recommend OAT but without a Dr. who's very familiar with it....the results can be difficult to understand.

[Rachel--24]

Question for the lymies.

Would all of you say that fatigue is (or was) a major primary symptom of your Lyme infection?

I dont think I know of anyone with Lyme who doesnt experience bouts of severe fatigue. Dr. P. said that Lyme patients have a profound type of fatigue.....which is why he doesnt think its a major player for me.

Before I joined this board I was contacted by a member of LN (he still posts there "Groovy2") who suggested that I might have Lyme. I had already been looking into it...but his mention of it pushed me to schedule with the idiot duck. I didnt get tested at that time....and honestly it was difficult for me to refrain from punching the duck in the face (I'm sure some of you can relate).

That was my worst experience with any doctor...EVER.

Anyways, I had just started the anti-candida diet at that time....so thats when I made the drastic switch to organic whole foods....and totally ditched the carbs, sugar and processed foods. Most of my severe symptoms went away almost immediately.....including the fatigue.

I recall asking Groovy2 if I would have that kind of immediate relief of symptoms from diet change alone....if my illness were caused by Lyme? He said that it was unlikely.

Its been over 3 years now and I'm still not having any bouts of severe fatigue, depression, confusion, etc.

I could probably be playing sports right now, I have enough energy to do the same things I did before I got sick. I also sleep about the same amount of hours I was sleeping prior to my illness...anywhere from 5-7 hours a night during the work week.

My CD57 was 78....its still pretty low considering what normal SHOULD be. My new Dr. pointed out that it was low.....and we dont want it to get any lower. However, 78 doesnt mean that its active. He said it COULD become active at any time in my life if I'm under heavy stress (which we all know).

I usually dont worry about it too much since I dont seem to have Lyme-related symptoms....and because my symptoms came on too fast to have been caused by Lyme. I'm worried it will show up in the voo-doo lady's test though.

What do you guys think based on my symptoms and all that you know about me (including results from previous tests)....would you think Lyme could be a major player even without those primary symptoms for the past 3 years?

[mftnchn]

Thanks Julie, I hope that you are doing better as well. I keep hoping that all the changes you have made will even help the monthly flares ultimately.

Actually I have been symptomatic again since yesterday afternoon. Not sure why.

Rachel, I have a question about mercury and wonder if this could explain my symptoms. I took my DMPS shot last Tuesday. Could the symptoms flare beginning Sat afternoon be from not excreting the mecury well enough? What would the timing look like?

Sherry

[mftnchn]

I love the scientificness! This is a very hard subject to learn, though. This is definately something that interests me since I had some sort of pathway blockage.

I am also interested in that test and am wondering if it would be right for me. I noticed that if there are certain deficiencies then you are more likely to have an environment friendly for yeast.

What I want to determine is what keeps my stomach from completely healing. I believe that *something* is doing it. Not sure what yet. I have to take digestive enzymes at every meal. If I don't I can get bloated, gassy, and painful to the touch. Sometimes I get tired after I eat and cold. I believe that some foods are still causing inflammation. And I have started gaining weight again. I really think I need to go gluten free again, but darn - its so hard!

I know that yeast plays a part, but something else is still is going on. I just have to figure out what.

I was going to ask you guys what test you might recommend.

So you aren't gluten-free? Seems like that could be pretty important. Celiac testing would be obvious, but I'm guessing you have done that?

[mftnchn]

Sherry,

Glad to SCD is working for you. I read a bit about it and wondered if I would need to start it completely from the beginning. That is what is keeping me from trying it. I don't think I can endure anymore complicatedness right now!!

Did you have testing that indicated this would be the right diet for you? Or did you just try it and see?

Yes, I had testing. The key test to show this was Rosmed (they have several tests). There's not much available online about that, unless you read German. The English website transfers you to the German website. Here's what is included in my results but I can't find the requisition form that says the name of the panel which was $199: Stool-flora (bacteroides, bifidobacteria, lactobacilli, clostridia, other anaerobes, e.coli, e. coli-hemolytic, enterobacteriaceae, enterococci, other aerobes, candida, geotrichum, other fungi, Ph-value) Digestive residues (fat, protein, water, sugar, fiber); Additional tests (bile acids, pancreatic elastase, secr. Immunoglobuline A).

The results come with two more pages of explanations of the results and recommendations including what herbals will work on the bad bacteria found (they test for sensitivity).

I had this test in March and again at the end of June. Both times the sugar residue was way high, it is supposed to be 0-0.5. In March it was 2.66 and in June it was 1.62. So the carb digest enzymes probably helped some, but it wasn't enough. My bile acids are off the charts low (less than 0.2) should be 0.7-2.0, were actually worse in June. Fat residue was normal in March but back up in June (fat malabsorption is still somewhat of an issue).

Here's the explanation on the high sugar: "Increased sugar in stool indicates mainly digestive disorders in small intestine who (sic) causes insufficiencies of Disaccharidases. We interpret increased sugar as an indicator of small bowel inflammation followed by lack of mucosal digestive enzymes like lactase, sucrase, amylase. Insufficiency of saccharidases can apply to monosaccharides (gluctose, fructose), disacchardies (lactose, saccharose, maltose) and polysaccharides (starch). The acidiflying flora utilizes these undigested sugars and form large quantities of lactic, acetic, butyric, and propionic acid ("fermentation dyspepsia"). Yeasts species also proliferate in a high carbohydrate environment. Specific therapy approaches include first algae (e.g. spirulena), lower "sugar" consumption and subsitition of digestive enzymes. Please consider further diagnostics like inflammation marker histamine, serotonine, hemoglobine and calprotectine as well as causes of inflammation like enteropathic bactera/viruses/parasists and food intolerance/allergy to apply a cause related, specific therapy."

I was struck by how this lab result explanation is similar to the discussion in the SCD book.

My LLMD pointed to the sugar residue and low bile acids as the key results of my labwork this summer, especially the sugar residue. Then he put me on the SCD.

I think you should start from the beginning, even if you are not that symptomatic. But you can progress pretty quickly if you don't have symptoms. Actually I found it easier to shift over that way. You start out with only 5-6 things to eat, so it is pretty easy to know what is okay and not okay. Then you add things one at a time, so it almost serves like an elimination diet.

Sherry

[mftnchn]

What type of markers showed up for you? Were there markers for impaired detoxification or oxidative stress??

In the Doctor's Data 24 hr urine amino acids here's the low ones (this was from January). I've just summarized, in the results they are broken down into categories:

Ammonia 7940 (range 12000-56000)

Methionine 13 (8-50)

Leucine 26 (24-120)

Isoleucine 8.7 (10-60)

Taurine 51 (220-1420

Cysteine 16 (25-84)

Arginine 12 (8-60)

Alanine 160(130-659)

Aspartate 9.8 (8-33)

Phosphoethanolamine 7.7 (20-95)

Phosphoserine < dl (0.06-0.8)

Cystathionine 8.1 (8-60)

Alpha amino N butyrate 6.9 (5-80)

Methionine sulfoxide is good: 3.7 (<10)

Homocystine is good: 0.17 (<8)

Glutamine is good: 540 (200-900)

The detox markers are methionine, cysteine, taurine, glutamine, clycine, aspartate. Of these cysteine and taurine are in the red, methionine and aspartate in the yellow, and glutamine and glycine on the 50th percentile.

The supplementation and implied conditions my LLMD doesn't go by, but it does show a very high need for magnesium and nitrogen. In the "yellow" are maldigestion/malabsorption, impaired detoxification, oxidative stress, and barely in the yellow is abnormal intestinal mircoflora and susceptibility to vascular disease.

Rachel, you can get into practice trying to interpret these results, LOL!!

Sherry

[mftnchn]

Question for the lymies.

Would all of you say that fatigue is (or was) a major primary symptom of your Lyme infection?

I'd say it is certainly one of my symptoms. However, I had that from childhood off and on so I am not sure of the amount that is due to lyme.

Pain has been my primary lyme symptom. Joint/muscle/nerve. The key that my LLMD picked up on was that the pain shifted around in location.

Sherry

[Rachel--24]

Rachel, you can get into practice trying to interpret these results, LOL!!

Sherry, I'm really gonna try to interpret them! It gives me something to study and hopefully by the time my own results are in I'll have a much better understanding. Its very likely that we'll have some of the same abnormalities. My Dr. will interpret the results (when I see him next) and it'll be interesting to compare.

My Dr. doesnt go by the lab interpretation either....at least he didnt with my OAT results. The lab recommendations were mainly a guide for supplementation. The results indicated a possible problem with B12 transport (among other things) and also glutathione deficiency. Dr. P. recognized that as being indicative of a block in the methylation cycle.....but this wasnt mentioned in the report. Proper interpretation is crucial I think.

I'd say it is certainly one of my symptoms. However, I had that from childhood off and on so I am not sure of the amount that is due to lyme.

Pain has been my primary lyme symptom. Joint/muscle/nerve. The key that my LLMD picked up on was that the pain shifted around in location.

The only time I experienced extreme fatigue was during the first few years I was sick...before I changed my diet. Once in awhile a still get it when I eat something that causes it. An example would be when I ate a couple slices of pizza...got that "drugged" feeling and passed out during my mineral IV.

Donna was in the office to witness that episode.

So yeah...sometimes food reactions knock me out but when it happens its obviously related to something I'd just eaten....otherwise I'm not fatigued.

I dont have the widespread pain anymore either....because without the problem foods the inflammation is reduced....not totally gone but significantly reduced. My pain doesnt shift around either....whenever I get it now its always in the same places....mostly in my upper body....especially my head.

Dr. P. asked me about pain in my hips, joint pains, neck pain, etc.

The only one I get now is the neck stiffness...but thats related to food and chemical exposure too. Someone walking by with a strong perfume can cause my neck to get stiff on a bad day. It always happens within minutes of exposure.

He had me touch my chin to my chest, tilt my head all the way back and tilt it from side to side. He said I had restricted movement side to side. I can feel it....it creaks from the inflammation...its tight. Some days are much better than others....always according to food and chemical exposure.

[dlp252]

I bought distilled water, heated it up in a big bowl and put epsom salts in it. Then I soaked my feet in it while I was on the computer. It kept me warm! I'm gonna start doing that more often.

I also drank something other than water for the first time in forever. I bought a bottle of martinellis apple juice. I got addicted to it really quick....I drank the whole bottle in a few hours. I want more now.

Oooohhh the feet soaking sounds wonderful...I may have to try that.

For all my recent procedures they brought me apple juice in the recovery room....oooohhhh my that was good, lol. In YOUR hands, oh yeah, racheling for sure, lol.

Would all of you say that fatigue is (or was) a major primary symptom of your Lyme infection?

...

What do you guys think based on my symptoms and all that you know about me (including results from previous tests)....would you think Lyme could be a major player even without those primary symptoms for the past 3 years?

Fatigue was/is definitely a major symptom. I'm talking so fatigued that I can barely sit upright at times. I think all the stuff I've been doing in the last year has helped take some of the burden off my body so that the fatigue isn't quite as profound, but it was really bad for a while and I still DO struggle with it.

I honestly don't think it's major for you...I think it's secondary and causing all the other things to be magnified.

Donna was in the office to witness that episode.

...

Dr. P. asked me about pain in my hips, joint pains, neck pain, etc.

Yeah...I got to see the pizza drugged Rachel passed out, lol!

I still get terrible neck stiffness and pain which nothing seems to help. I had other joint pain too which seemed to clear up when I cut out gluten and dairy. Course, my toe joint hurt like heck too, but hopefully THAT's fixed now. I get hip pain too but it's better in the last two years.

[Rachel--24]

Oooohhh the feet soaking sounds wonderful...I may have to try that.

Yeah...I'm soaking right now!!

I'm still amazed that I drank all that apple juice without any inflammation occuring! That would have never been possible in the past.

.....and you KNOW I'll be going back for another bottle today! It was soooo good!

Yeah...I got to see the pizza drugged Rachel passed out, lol!

I still get terrible neck stiffness and pain which nothing seems to help.

When I get inflammation from phenols or oxalates or whatever...its actually noticeable (maybe not to everyone but to me its very obvious). You can see the muscles in my neck...they're all kind of enlarged...same with my jaw muscle and other tissue around my head. My shoulders also get "puffed up"...people think I'm working out.

Even my chest gets tender and you can see the swelling. It all goes down when I stop eating the foods which are causing it.

It sucks when it happens though.

It the worst in my jaw and and neck.

[Shelly D.]

What a revelation!! I feel pretty dumb too. A vet told me that dogs are frequently intolerant to corn so I spent hours looking for really high quality dog food that didn't have corn in it...and yet I continued to eat it. Now that you mention it it does seem logical that we omnivores aren't dealing with domesticated grains any better than our domesticated carnivores are.

[Rachel--24]

This is a really good (easy to understand) page about methylation defects.

Open Original Shared Link

The third paragraph I think would describe what happened to me.

It would be interesting to eventually have some genetic testing done to see if there truelly are some defects there. My poor diet could have easily contributed to deficiencies of important cofactors which are necessary for the enzymes to operate.

Even if there are weaknesses the enzymes can still function within the normal range without the exposures to toxic metals and chemicals which can play on those weaknesses....and also providing that the catalysts (cofactors) for these enzymes are available. A person with a genetic weakness would most likely require a higher amount of the necessary vitamins and minerals than the person who has no weakness or defect in their pathway.

I would have been deficient of zinc and other important cofactors....because I ate primarily processed foods and did not take supplements. If there ARE some defects in my pathway....obviously the exposure to mercury and other heavy metals would have had devastating effects on my health.....which it clearly did.

I cannot quote from the article but this is one sentence in the 3rd paragraph.

"Certain metabolic weaknesses have no impact if exposure to toxins such as mercury or pesticides does not occur, but may lead to rapid deterioration in health and function under conditions of exposure to these and other toxins".

If I do have the weaknesses it would almost certainly prove that the exposure had everything to do with my current condition...AND I would still be healthy if not for that exposure.

[Rachel--24]

What a revelation!! I feel pretty dumb too. A vet told me that dogs are frequently intolerant to corn so I spent hours looking for really high quality dog food that didn't have corn in it...and yet I continued to eat it. Now that you mention it it does seem logical that we omnivores aren't dealing with domesticated grains any better than our domesticated carnivores are.

Hi Shelly

My posts about corn are kind of outdated. My issues were not actually caused by corn....it was one of many things that got ruled out along the way. I actually got worse when trying the corn-free diet.

I'm not dealing with grains very well because of other underlying issues.

[Shelly D.]

Sorry,

I'm embarrassed. I'm trying to figure this website out and am still having trouble catching on to where everything leads. It's too bad you didn't get better, I hope you figure it out.

[Rachel--24]

Sorry,

I'm embarrassed. I'm trying to figure this website out and am still having trouble catching on to where everything leads. It's too bad you didn't get better, I hope you figure it out.

No reason to be embarrassed....this is just an unusually looooong thread. Trust me....LOTS of people have replied to the corn posts.

I'm actually lots better now and I do have alot of things figured out since the beginning of this thread. I'm a work in progress.

Anyways, if you have any questions on navigating the board....feel free to ask.

[CarlaB]

Only thing is that I did end up waking up with a stomach ache and then "d".

Uh, that's a normal reaction to apple juice ... a whole bottle would give anyone D!!!

Question for the lymies.

Would all of you say that fatigue is (or was) a major primary symptom of your Lyme infection?

What do you guys think based on my symptoms and all that you know about me (including results from previous tests)....would you think Lyme could be a major player even without those primary symptoms for the past 3 years?

Yes, the debilitating fatigue is a HUGE problem for me ... one of the major symptoms I have now. It's down to fatigue, insomnia, left knee pain, shoulder/neck/back pain. That's really about it for me. I started out with about 45 symptoms. It's hard to realize you are getting better when there are days you are too tired to even get out of bed and get dressed.

It's an impossible fatigue ... it's not like being tired. One day I felt good, but was tired, and I was like, "Wow, this is weird, it's nothing like fatigue!"

I think Lyme is a player for you. Not necessarily a big player, but it's there lurking in the background.

For me, the digestive issues were the first to show up when my Lyme would come out of hiding. The current flare up of five years started with knee pain, then digestive issues ..... and the devastating fatigue didn't come out until after a couple years of misc. symptoms. The symptoms kept adding up. The fatigue started out slowly .... then became overwhelming.

I did see improvement going gluten-free. Drastic improvement, but then I slid downhill again. So, that is different than you.

I don't know if you'll have to address the Lyme more than you have or not, but I do think it's a player, even if it's a small one. Definitely not something to pretend is not there. But yeah, keep doing what you're doing and make yourself stronger ... you might take care of everything else and have your own immune system finally strong enough to take care of the Lyme. I've done that before myself.

Sorry if I've missed something, I just skimmed. I was into a good book. Then took the kids to the pool.

[Rachel--24]

I have to say that I'm constantly amazed by the folks on this board.

Well.....maybe flabbergasted is a better word...or even better...I'm freakin bumfuzzled right now!

I stole that word from April...she cracked me up with her very appropriate use of it in the Glutenease thread. That whole experience had me feeling quite bumfuzzled.

Anyways, the thought of taking digestive enzymes (for the purpose of protecting oneself from possible cc while eating out) was apparantly just too much for some people to grasp. Digestive enzymes which break down gluten?? OMG....total heinosity....how dare any company manufacture such a product!!

So yes....its generally NOT accepted here. Its generally much better to just risk getting cc'd and suffer any consequences that might result from the unseen crumb which may have ended up in your gluten-free meal. Those who take enzymes and DO NOT suffer symptoms from cc...well they're all going to die from cancer or other celiac related complications.

Those who SUGGEST taking enzymes prior to eating....(for the purpose of reducing possible damage from accidental exposure to gluten...as well as improving digestion overall)....are basically putting all Celiac's at risk with their claims that this helps them.

HOWEVER, diagnosed Celiac's who choose to willingly and intentionally consume gluten are considered to be "pioneers"...they are "heroic" and "brave"!!

This totally and completely BLOWS MY MIND!! I'm truely stumped.

Ok...so this is what I'm gathering based on recent posts in various threads:

1. An enzyme which breaks down gluten is definately not well accepted around here. People who take these enzymes and have Celiac Diseaase are putting themselves at risk...even though they are following the diet 100%.

I'm still not sure where the risk is....but yes...it must be better to suffer damage and be sick for days as a result of cc.

Enzymes are snakeoil...people who "promote" there use may be shills....so beware of the "enzyme pushers"....they are a danger to the entire Celiac Community!!

20 pages later and its still a heated discussion...until it eventually dies. Lots of horses were also killed along the way.

2. Its not ok to consume small amounts of gluten during communion. Gluten can cause damage in small amounts. I happen to agree with this....BUT maybe those people who are going to take commuinom regardless (because of their religious beliefs) should pop a gluten digesting enzyme pill right before they recieve communion.

Yes...I'm an evil enzyme pusher.

I would have recommended this in the communion thread.....but OMG...can you imagine the controversy??

Seriously though....if someone is gonna consume gluten REGARDLESS...why not take an enzyme to break it down more efficiently??

3. A couple people report that drinking light beer has no effect on them. There is a mature debate about this....and by page 3 (or maybe 4?) there are diagnosed Celiac's kicking back drinking Bud Lights and reporting their reactions to the board.

OMG...they are HEROES....how very BRAVE of them!! I am in complete AWE of these PIONEERS who are out there testing this theory that gluten in small amounts may not be harmful....so long as its coming from a BEER of course.

But lets get real....how can these people NOT be putting Celiac's at risk by stating that it may be SAFE to drink regular light beer which is NOT gluten-free???

But NOOOO...these people are "pioneers" for the Celiac community...and yet the "enzyme pushers" who are NOT purposely consuming gluten are DANGEROUS and risking the health of all Celiac's by discussing this topic on the board. Newbies may read something about Glutenease and use this enzyme as an excuse to CHEAT on their diet.

However, its definately OK to cheat....so long as you're getting a buzz from it.

AMAZING.

OK...I might be done with my rant....but I'm sure I'll be bumfuzzled over this for quite some time.

PS

Am I the only one scratching my head over this??

[Rachel--24]

Oh...I forgot to mention "adventurous".

Purposely consume gluten in the form of a communion wafer and this is very bad. However, if you drink a Bud Light...different story...you're an adventurous soul.

I dont know whether to laugh or cry.

Ok...I'm laughing...its total hypocrisy...gotta love it!

I'm refraining from posting my thoughts....dont wanna crash the beer party thats going on right now.

Dont know how long I can hold back though....

[aprilh]

Its not as bad as math though.

Math? I could totally take math over this Methylation stuff! I do love to learn about health related things, but this is going to require some major brain power!

So you aren't gluten-free? Seems like that could be pretty important. Celiac testing would be obvious, but I'm guessing you have done that?

I have not had celiac testing. I haven't had much testing really.

I think I do need some additional testing. Just not sure what at this point.

I was gluten free for about a year. I had leaky gut and had to go gluten free due to the major reactions I was having. I have actually been back on for a few months. My *gut* feeling tells me I need to cut it back out. It doesn't totally correct the issues with digestion, but I think it helps.

The only time I experienced extreme fatigue was during the first few years I was sick...before I changed my diet. Once in awhile a still get it when I eat something that causes it. An example would be when I ate a couple slices of pizza...got that "drugged" feeling and passed out during my mineral IV.

Donna was in the office to witness that episode.

I have totallly had that happen. Usually its sugar or starch, for me, and I think its because the yeast just loved it. I literally can pass out sitting up on the couch watching tv! Then 30 minutes later I am back into reality again!

It doesn't happen to me as much anymore.

The inflammation occurs in the same place. Back of the neck, shoulders and upper back. Sometimes the jaw gets really tight. Usually I have to go get adjusted. I REALLY want to get a massage, but just haven't felt like I should spend the money.

I have to say that I'm constantly amazed by the folks on this board.

Well.....maybe flabbergasted is a better word...or even better...I'm freakin bumfuzzled right now!

I stole that word from April...she cracked me up with her very appropriate use of it in the Glutenease thread. That whole experience had me feeling quite bumfuzzled.

Is that thread still kicking? I couldn't think of a better word! I was, and am, completely bumfuzzled and flabbergasted at some of the comments made on that thread!!!

So crazy to suggest that someone NOT take a digestive enzyme to deal with CC and feel OKAY afterwards INSTEAD of dealing with 5 days of complete terribleness! That darn snake oil! How dare it make me feel okay after having a crumb of gluten in my food that I did not purposely eat, but that just happened to *fall* in there.

I bet you money, though, that some people who *think* they are having CC issues, could actually be reacting to a number of things in their food and maybe even have leaky gut and the enzymes are just helping break it all down more efficiently. For others, it could be the CC. Hard to know.

I agreed with 100% of everything you posted over there!

[Rachel--24]

Oh...and to anyone who likes to read this thread just so that they can use these topics for laughs in other threads...I wont name names...you know who are.

I say this....KEEP READING!!! You might actually learn something from the OMG'ers.!

Not that you'd ever admit it.

I bet one day you'll be trying some of these non-conventional methods out yourself. Let us know how it goes ok.

WOO-HOO!!

I need to borrow that little guy from LymeNET....you know the one who runs across the screen with his fists in the air shouting WOO-HOO!!

Yeah...insert that guy *right here*.

okay...back to business...ground up plants...unproven methods...infrared lights ...and all that good stuff that we do here.

Carry on...

[aprilh]

I'm not an official diagnosed lymie. But I do seem to have a slight fatique problem. I am a very busy working mom, so i think I probably could use that as an excuse. But, I do recall a time where I had more energy. I come home from work and could so take a nap everyday. I push through it though - no time for naps! But in comparison to everyone else - its very mild.

When I was dealing with all that leaky gut and MAJOR candida overgrowth problem I was EXTREMELY tired all the time. I forced myself to get up out of bed and go to work everyday. I had such a hard time focusing - but I was there.

After I toxified myself by eating too much cilantro I was even MORE tired.....but I think that was a result of the toxification I performed on myself. Yea, I'll never do that again!

I have eaten plenty of cilantro since without problem. I often wonder if possibly I was dealing with a blocked pathway at the onset of that instead of the other way around. I thought I caused the pathway blockation *after* the cilantro overdose.

[aprilh]

Today I received a letter from Igenex. I hurried to open it to see if it was the results of the tick sample.

It was a receipt.

trickery and deceit! Ugh! more waiting.....

[Calicoe]

I have to say that I'm constantly amazed by the folks on this board.

Well.....maybe flabbergasted is a better word...or even better...I'm freakin bumfuzzled right now!

I stole that word from April...she cracked me up with her very appropriate use of it in the Glutenease thread. That whole experience had me feeling quite bumfuzzled.

Anyways, the thought of taking digestive enzymes (for the purpose of protecting oneself from possible cc while eating out) was apparantly just too much for some people to grasp. Digestive enzymes which break down gluten?? OMG....total heinosity....how dare any company manufacture such a product!!

So yes....its generally NOT accepted here. Its generally much better to just risk getting cc'd and suffer any consequences that might result from the unseen crumb which may have ended up in your gluten-free meal. Those who take enzymes and DO NOT suffer symptoms from cc...well they're all going to die from cancer or other celiac related complications.

Those who SUGGEST taking enzymes prior to eating....(for the purpose of reducing possible damage from accidental exposure to gluten...as well as improving digestion overall)....are basically putting all Celiac's at risk with their claims that this helps them.

HOWEVER, diagnosed Celiac's who choose to willingly and intentionally consume gluten are considered to be "pioneers"...they are "heroic" and "brave"!!

This totally and completely BLOWS MY MIND!! I'm truely stumped.

Ok...so this is what I'm gathering based on recent posts in various threads:

1. An enzyme which breaks down gluten is definately not well accepted around here. People who take these enzymes and have Celiac Diseaase are putting themselves at risk...even though they are following the diet 100%.

I'm still not sure where the risk is....but yes...it must be better to suffer damage and be sick for days as a result of cc.

Enzymes are snakeoil...people who "promote" there use may be shills....so beware of the "enzyme pushers"....they are a danger to the entire Celiac Community!!

20 pages later and its still a heated discussion...until it eventually dies. Lots of horses were also killed along the way.

2. Its not ok to consume small amounts of gluten during communion. Gluten can cause damage in small amounts. I happen to agree with this....BUT maybe those people who are going to take commuinom regardless (because of their religious beliefs) should pop a gluten digesting enzyme pill right before they recieve communion.

Yes...I'm an evil enzyme pusher.

I would have recommended this in the communion thread.....but OMG...can you imagine the controversy??

Seriously though....if someone is gonna consume gluten REGARDLESS...why not take an enzyme to break it down more efficiently??

3. A couple people report that drinking light beer has no effect on them. There is a mature debate about this....and by page 3 (or maybe 4?) there are diagnosed Celiac's kicking back drinking Bud Lights and reporting their reactions to the board.

OMG...they are HEROES....how very BRAVE of them!! I am in complete AWE of these PIONEERS who are out there testing this theory that gluten in small amounts may not be harmful....so long as its coming from a BEER of course.

But lets get real....how can these people NOT be putting Celiac's at risk by stating that it may be SAFE to drink regular light beer which is NOT gluten-free???

But NOOOO...these people are "pioneers" for the Celiac community...and yet the "enzyme pushers" who are NOT purposely consuming gluten are DANGEROUS and risking the health of all Celiac's by discussing this topic on the board. Newbies may read something about Glutenease and use this enzyme as an excuse to CHEAT on their diet.

However, its definately OK to cheat....so long as you're getting a buzz from it.

AMAZING.

OK...I might be done with my rant....but I'm sure I'll be bumfuzzled over this for quite some time.

PS

Am I the only one scratching my head over this??

Oh...I forgot to mention "adventurous".

Purposely consume gluten in the form of a communion wafer and this is very bad. However, if you drink a Bud Light...different story...you're an adventurous soul.

I dont know whether to laugh or cry.

Ok...I'm laughing...its total hypocrisy...gotta love it!

I'm refraining from posting my thoughts....dont wanna crash the beer party thats going on right now.

Dont know how long I can hold back though....

Wow. I'm on the beer thread, but I don't recall ever feeling "heroic" or pioneering. I was just reflecting my experiences back and trying to collectively question the limits of so-called absolutes. I didn't realize that my self-admitted experiences and actions endangered an entire community. If that is the case, just about every poster with an experience and a theory endangers every one on this board. But, that can't be the case, because I have found information to help me on this board, including your posts, Rachel. I have also found some of the information and posts on the beer thread to help, even if it is only self-admitted reckless experimentation. I think that most who can read well enough to find this forum can gather that the thread is not prescriptive. I understand your comments may be a reaction to being judged by others simply for exploring other possibilities, but I wasn't one of them. Please don't lay a blanket judgment on others who are also merely questioning. I am not a diagnosed Celiac, and I know that you qualified that in your statement. I don't think your comments were aimed at everyone on the thread, because I know I have never judged you for questioning or thinking out loud. No one wants to be judged merely for having a discussion, even it is just by association. I think you should join or crash the beer party, as it would only add to our collective experience. If my comments are out of line here, I'm sorry in advance.

[Calicoe]

I say this....KEEP READING!!! You might actually learn something from the OMG'ers.!

I know I've learned lots here. Don't know about the other guy with the fists.

[AndreaB]

Jin, sounds like baby steps are being taken in the right direction. I'm glad you found Dr. D.

Ditto!

I have an update. My GI doc just called a while ago (yes, on a Saturday, lol). My growth IS precancerous and he recommends having it removed.

I'm glad you get to have your doctor there for the surgery. That would make me more comfortable too. Also glad it won't be as bad as you were thinking.

Yay on naps and still being able to sleep at night. Yay on getting out!

My sense is that it is helping me. I am really feeling a lot better, and it has been gradual since starting the diet. I am still having symptoms in the morning which I am watching. It is joint/muscle and actually started when I started Enula and a couple of other changes and went off Zithromax. It got worse initially on SCD now is better but definitely present. It's what I associate with lyme, but there may be more to it. I have a couple of joints that are really quite sore and stay that way all day.

Glad to hear the SCD is going well for you.

Math? I could totally take math over this Methylation stuff! I do love to learn about health related things, but this is going to require some major brain power!

I'm with you on this one April!

Today I received a letter from Igenex. I hurried to open it to see if it was the results of the tick sample.

It was a receipt.

trickery and deceit! Ugh! more waiting.....

How much longer do you have to wait.....another week?

We are back from our weekend at the beach. We had a good time playing in the ocean, although it was very cold!

The memorial/ash scattering went well too. I found out my dad had a large growth on his side/midsection so it wasn't a spread from prostate cancer like I had thought. I do need to look at the death certificate (if I can remember where I put it) and see what they listed on that though). He was too weak to have any surgery done to remove it.

Also found out that those who have to undergo dialysis are put on the machine for longer and more often than needed to help cover the cost of the machines! I must say I wasn't happy to hear this, but I'm also not too terribly surprised.

I've been forever in catching up here and need to let Mitch on to have his computer time.....back later.