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Rachel--24

Omg...i Might Be On To Something

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Oooh massage sounds good...I'm getting one tomorrow!

Re the article, I wonder if that's why my doctor wouldn't give cholestyramine to me.

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a quick drive by....this "idea" has been in and out of my mind for a long time now....so I'm just posting too see what you guys think??

One time I read about some autistic kids getting worse when they were put on the gluten-free/casein free diet. Apparantly it was because they needed the nutrients they were getting from these foods....and so they deteriorated when they were removed from the diet. These were non-celiac kids.

They did have problems from the intolerances themselves....but they just didnt do well taking the foods out either. So for those kids...it turned out they did better keeping the foods in... but taking enzymes to break them down down..... and then they made big improvements.

It seemed like I got more and more sensitive as time passed....until I got down to the very restricted diet that I'm on now. I used to think it was just that I was more *aware* and that reactions were more noticeable....as I continued to eliminate more things.

I notice that in some cases the intolerances keep becoming more noticeable....and that the diet needs to be more restricted...and this continues long after gluten-free. In fact, many times they are appearing at a time that one would think that intolerances caused by damage from gluten would (or should be) diminishing.

There are also some who are sensitive as they start the gluten-free diet.....and then as they heal they get over these intolerances. That seems like the typical Celiac healing process taking place.

In my own case I'm thinking that if my problems started with the methylation cycle....it has also progressed BECAUSE I have eliminated so many foods. The methylation process requires specific nutrients (some people require a higher amount than others).

If there is a problem somewhere....if metals are blocking the transport of nutrients, or if the weaknesses have caused deficiencies, or if infections are inhibiting this process...malabsorption, etc. All of these things could cause what might have started out as a small problem....to become a much bigger problem (as the toxicity builds).

Its obvious that specific nutrients given to autistic kids....increases the function of the methylation cycle and opens up the pathway.

What I'm wondering is.....when we take away so many foods....is it actually causing the methylation cycle (or any other weaknesses) to become more severely impaired?? Of course this doesnt apply to everyone...but just people who might have many intolerances and/or impaired detoxification.

On the one hand....you really have NO choice but to remove the foods if they are causing severe symptoms. This is really important....BUT...on the other hand...in doing so, maybe additional intolerances start to appear as the the cycle becomes even more impaired??

This is what I think might have happened with me. Even if some of these foods are not the best choices....many of them still provided nutrients that I'm not getting now. I think this is actually what caused me to end up at a point where I really have NO safe foods. Also, supplements and so many other things can cause problems as well.

Its kind of a vicious cycle. I do feel tons better having eliminated the foods that were causing me to feel really bad....and I would certainly do it all over again. However, I do think that this is why I began to notice so many additional sensitivities.

The cylce was impaired....it got worse when I was exposed to too many toxins. This caused detoxification to become so impaired that symtoms and senstitivies became noticeable. The more I "took away"....the more the cycle was slowed down....and the more impaired detoxification became. So the lack of nutrients did have an effect on the function of the methylation cycle (I think).

I think this is why some of those kids totally deteriorated when major food groups were taken out of their diet. It may have caused "sluggish" body system to become even MORE sluggish.

So if the problem for me is proven to be in the methylation cycle...I will need those nutrients in order to regain some of that function that is not working too well for me right now.

Thats just my new theory on why so many intolerances appear after big ones like gluten and casein are taken away for a long period of time. Even if these foods are causing problems....if the underlying issue is somewhere else (like in the methylation cycle) then we will become more sesntive over time (I believe).

Supplementing B12 (and others) can definately help (if you're able to tolerate them)......but I think unless you happen to "hit" on the exact area of weakness.....overtime problems will still "pop up"...seemingly out of nowhere.

I'm gonna ask that new voodoo doctor and also Dr. P....to see if they think its possible.

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Sounds reasonable enough to me.

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Morning everyone.

I was on Actos for awhile, wasn't a good choice for me. Didn't notice improvement and had a lot of weight gain rapidly.

Speaking about food restrictions, I've run into a problem here. So far all the almonds I have found have salt and "flavorings" and no idea what is in them. I just realized that, and also that I started having more symptoms around the time when I switched to them (I had brought a bit of almond flour back with me from the USA). I have one more place to check to see if I can find "raw."

Not only the almond problem, but the problem of how to grind them up. My blender and coffee grinder attachment (local brand) don't work well at all. I need to replace the blender anyway, but with what?? Most of the appliances have low watts compared to the USA. Hardly any food processors available, and what are, are expensive. I'm still looking and hoping that I can get the various "options" to do a test run in the store before I buy. Here you can't take things back easily after you buy. I wish our electric was 110 and I'd have lots of options to bring something over from the USA.

I may do another few days of SCD intro and see if I get a little better, although I am coming up on my switch to Zith again so it might be better just to take the almonds out and see what happens.

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Has anyone gotten an update from Kassandra?

Rachel, I think you make a very good argument. But, when you are having such reactions, how do you NOT take out the foods? I think I did became deficient in calcium over time by taking dairy out of my diet for so long. I figure if I would have done the SCD diet from the get go, I might have healed more by now. I would have been able to eventually eat all that yogurt at least!

My neck and back have been so messed up! The massage last Friday made it worse I think. I don't know whats going on! And I feel like I am getting some of my other wierd symptoms too. I am wondering if its adrenal related.

My chiropractor isn't going to be back until Monday.

I am wondering if mold is around me somewhere causing this.

The good thing is the building we rent our office was sold and we have to move by 12-31. The short time frame is stressful, BUT I have suspected mold issues in the basement of the building, so maybe it will be a good thing in the long run.

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Well I've been struggling for quite some time now. It doesnt matter what I eliminate I'm still sick. Its like it HAS to be something that is constantly in my system because I havent had a single symtom-free day for over 3 years now. Even when I limit myself to 2 safe foods I'm still having symptoms so basically nothing has worked. All meds or supplements have worsened my symptoms. All gluten-free packaged foods bother me. I toatlly eliminated casein and still have problems. It was only one supplement I was taking that had milk in it so I stopped taking it...felt better...started eating more foods and totally symptomatic again.

I was eating Enjoy Life chocolate chips with no problems..also did some baking...no problems. I had one cake mix with all safe ingredients and reacted. The mix only had like 4 ingredients and I tolerate all of them...the only questionable ingredient is Xanthan gum. Its also in every gluten-free product I've reacted to and also rice milks and almond milks and a ton of other stuff I cant have. I found out its from CORN. I never thought about corn...but its in everything. Even when I'm only eating meat and veggies (no corn) I'm still having corn everyday in my thyroid meds and any supplements or vitamins I've ever taken most likely have corn.

Pre gluten-free I never ate much candy or sweets....my favorite snacks were popcorn and Tostitos. These were also the first foods I started avoiding long before I ever heard of gluten because the next day I always had a swollen face and a migraine. I had thought it was from the salt or something. I thought everything was thyroid related since I had Graves so I started avoiding all salt.

I did some research on corn and its in pretty much everything...seems more difficult to avoid then both gluten and dairy. Today at work (I work in a grocery store) I started reading all the labels of the foods I used to eat before I got sick. They ALL have corn. Its in bread, soups, microwave dinners, yogurts, cheese (why is corn in cheese?). Anyways, I've never been corn-free because of my thyroid meds and lots of other things I've tried over the last year. I had posted about getting "glutened" by all the gluten-free cereals. Well they are all corn based....DUH. I dont know why I never thought of this since everything I've had problems with have some form of corn in them.

I really need to eliminate the corn to see if I get better but dont know how I can do this when I need to take thyroid pills everyday. What do people do in a situation like this? What if I'm intolerant to corn all this time and its in the medication I need to take?

The other big question is am I really intolerant to gluten and dairy? If I get better off corn I dont know what to think about that. All the foods that have gluten also have corn so I would likely have to stay off gluten anyways....hmmm...does pizza have corn in it? :huh:

Also yogurt and ice cream really mess me up but they also have corn. There ARE some brands and flavors that dont have corn so I would LOVE to not have a problem with dairy!!

I would rather be intolerant to corn and gluten both than have to give up dairy for good.

Does anyone have a corn intolerance? Could I have just developed this out of nowhere and NOT have gluten intolerance...or is it more likely that gluten caused this to happen in the first place? I'm actually hoping I'm corn intolerant cuz as hard as it seems I've been struggling a long time now. The symptoms I've gotten from the stuff I've eaten with xanthan gum are severe....also I had powdered sugar yesterday and had another severe reaction. I have no reaction to cane sugar but when I looked at the ingred. of the powdered stuff its cane suger AND corn starch! Right now I feel exactly like I felt before I ever went gluten-free...everything hurts. :( This would explain why I dont do well with anything processed or with any supplements or vitamins or medications.

I dont see too many people here with corn problems but hopefully someone has some advice about the thyroid meds??

u can easily get ur meds made corn free and whatever else u need them free from..just talk to ur pharmacist and tell him what u cant have... they have ur script..and they gotta make u what u need..just tell them how important it is that they dont contaminate ur pills..so clean counting trays...sorting utensils etc...and thats what i did too...since all my pills came sugar coated too .

i also can not handle corn of any kind...including any gluten-free mixes...since im highly allergic to rice..some manufacturers are catching on to this trend..and make alot of potato only or other rice free mixes...but of course i cant eat those either lol lol

so much for eggs and toast darn it lol

there seems to be quite a few ppl that can not tolerate starches no matter what food they are from..and im sure its related somehow to the way our bodies use the sugar ...or convert the sugar....i wouldnt be surprised if there was a gene related to the misdirection of those sugars..and even that its related to diabetes and hypoglycemia..ok scientists...get on it lol!

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a quick drive by....this "idea" has been in and out of my mind for a long time now....so I'm just posting too see what you guys think??

One time I read about some autistic kids getting worse when they were put on the gluten-free/casein free diet. Apparantly it was because they needed the nutrients they were getting from these foods....and so they deteriorated when they were removed from the diet. These were non-celiac kids.

They did have problems from the intolerances themselves....but they just didnt do well taking the foods out either. So for those kids...it turned out they did better keeping the foods in... but taking enzymes to break them down down..... and then they made big improvements.

It seemed like I got more and more sensitive as time passed....until I got down to the very restricted diet that I'm on now. I used to think it was just that I was more *aware* and that reactions were more noticeable....as I continued to eliminate more things.

I notice that in some cases the intolerances keep becoming more noticeable....and that the diet needs to be more restricted...and this continues long after gluten-free. In fact, many times they are appearing at a time that one would think that intolerances caused by damage from gluten would (or should be) diminishing.

There are also some who are sensitive as they start the gluten-free diet.....and then as they heal they get over these intolerances. That seems like the typical Celiac healing process taking place.

In my own case I'm thinking that if my problems started with the methylation cycle....it has also progressed BECAUSE I have eliminated so many foods. The methylation process requires specific nutrients (some people require a higher amount than others).

If there is a problem somewhere....if metals are blocking the transport of nutrients, or if the weaknesses have caused deficiencies, or if infections are inhibiting this process...malabsorption, etc. All of these things could cause what might have started out as a small problem....to become a much bigger problem (as the toxicity builds).

Its obvious that specific nutrients given to autistic kids....increases the function of the methylation cycle and opens up the pathway.

What I'm wondering is.....when we take away so many foods....is it actually causing the methylation cycle (or any other weaknesses) to become more severely impaired?? Of course this doesnt apply to everyone...but just people who might have many intolerances and/or impaired detoxification.

On the one hand....you really have NO choice but to remove the foods if they are causing severe symptoms. This is really important....BUT...on the other hand...in doing so, maybe additional intolerances start to appear as the the cycle becomes even more impaired??

This is what I think might have happened with me. Even if some of these foods are not the best choices....many of them still provided nutrients that I'm not getting now. I think this is actually what caused me to end up at a point where I really have NO safe foods. Also, supplements and so many other things can cause problems as well.

Its kind of a vicious cycle. I do feel tons better having eliminated the foods that were causing me to feel really bad....and I would certainly do it all over again. However, I do think that this is why I began to notice so many additional sensitivities.

The cylce was impaired....it got worse when I was exposed to too many toxins. This caused detoxification to become so impaired that symtoms and senstitivies became noticeable. The more I "took away"....the more the cycle was slowed down....and the more impaired detoxification became. So the lack of nutrients did have an effect on the function of the methylation cycle (I think).

I think this is why some of those kids totally deteriorated when major food groups were taken out of their diet. It may have caused "sluggish" body system to become even MORE sluggish.

So if the problem for me is proven to be in the methylation cycle...I will need those nutrients in order to regain some of that function that is not working too well for me right now.

Thats just my new theory on why so many intolerances appear after big ones like gluten and casein are taken away for a long period of time. Even if these foods are causing problems....if the underlying issue is somewhere else (like in the methylation cycle) then we will become more sesntive over time (I believe).

Supplementing B12 (and others) can definately help (if you're able to tolerate them)......but I think unless you happen to "hit" on the exact area of weakness.....overtime problems will still "pop up"...seemingly out of nowhere.

I'm gonna ask that new voodoo doctor and also Dr. P....to see if they think its possible.

yes B12 is a very very important part of a restricted diet..u should definitely find a really good health consultant and get her to pick u out a bunch to take ....i have about 20 pills i need to take each day and without them i would probably be dead....if ur detoxing ....take plenty of alpha lipioc acid R+ and take that each day for about 6 months.

u might have to do some research to find pills without gluten or corn or whatever else u cant tolerate...but its out there..and important for u to find..good luck:)

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One last check in before surgery. I'm a little bit nervous, and when I get nervous, I get busy! So I've been making food (soup, etc.) for the hospital because I won't be able to eat anything there. I don't know if I'll be hungry, but just in case, I'll be prepared.

I have quite a few friends coming to visit since my mom isn't going to stay the entire time because she gets really overwhelmed in these situations. They'll be there from the time I wake up to pretty much when I go to sleep tomorrow night. So, someone will be with me almost the entire time which is nice.

Dr H has requested a sample of my GB to be sent to Igenex to have a Western Blot run on it. He talked to the the surgeon today and has arranged that. Also, I will start infusing Rocephin tomorrow night in the hospital because my GB will be out! :) (I haven't had a dose of Rocephin since Monday night in the ER)

I also have an iron update. My hematologist talked to Dr H and he said that he won't give me any Iron IV's without steroids...and Dr H said no steroids. They agreed to disagree that I won't be getting any Iron IV's... Dr H wants me to start on Vitamin A and C (already on C) and L-cysteine to help me absorb iron from my food, etc.

The problem comes in when my ferritin drops to 0 (which will happen in a month or so) then my hemoglobin drops slowly (meanwhile I feel like a zombie) and finally I will need a blood transfusion. So that wasn't great news. <_<

I will email or text Carla so she can update you guys as soon as I'm able. :)

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Kassandra, I'm relieved that Dr. H is very on top of things and that you won't be having those iron IV's any time soon. However the iron level problem sure needs a solution. Does Dr. H think the thyroid connection mentioned by Nora might be a possibility? Could it be iron loving bugs in the gut that could be tested for?

Good practical way to spend your energy--that food will come in handy when you come home if not in the hospital.

Hope very much that the surgery is the easiest one possible, that all goes smoothly.

Lots of best wishes and encouragments to hang in there!

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Hi Kassandra, good luck with the surgery. I'll look forward to hearing from you when you're done (and feeling better than ever!).

Welcome Mysty.

Rachel, glad you are always able to figure things out.

I finally figured out where this really bad D is coming from - cholestyramine!! It constipates the world, but causes watery diarrhea for me. <_< So, I'm going to stop taking it today to see if it lets up again. Other than being a little weak from the D that started yesterday afternoon when I took the cholestyramine, I feel good. :)

I had a massage and it stirred up a lot of toxins and made me so grumpy a friend could even tell in an email, ROFL, but today I'm feeling much better. No pain. The air hunger is gone since I started back on babesia meds. Dr S of FL who has the website and wrote a book on babs says that mold makes babesia much worse. So, it's no surprise that getting rid of the mold exposure would release some babs. I'm feeling like I'm pulling out of it, if it weren't for this weakness. I didn't keep much food yesterday. I'm down to 126.

I can't wait to go to Germany to get rid of the Lyme. If I didn't have Lyme, I wouldn't be so affected by things like mold or mercury. I got an email this morning from a lady who was really sick with Lyme and is in Germany now. Here's what she said (since she said I could post it on LN, I don't think she'd mind me posting it here, too) -

I just wrote a mini novel only to find you are right - big problem on lymenet. Oh well. If it gets working and you want to post for me, you can let them know that Mrs. Klein says I look ten years younger and I have probably lost 8 pounds which I didn't really need to lose. After testing positive for all 8 or 10 strengths at my first visit, after just two treatments and one appendix removal, I tested positive for only the very weakest strength. I will go home lyme free and I am feeling wonderful. To love life again and look forward to a bright future is almost overwhelming! Tell them I have tried to post and will let them know the whole story soon.

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Sherry, I don't think it will be too long before it's offered here. I know that Dr K is looking into it, seeing if it really works, I guess. Also, I know of a local doctor here with Lyme who is training to be an LLMD who is interested. Maybe I'll be able to let my machine be used for helping others. So, it's only a matter of time .... but it also might be a matter of the FDA as well.

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Yes I hope it won't be long and will be feasible for all. When do you leave again?

October 11. I will keep a blog while I'm there, I'll let you all know later where.

I'm so glad I went through this mold detox FIRST! I'd hate to have gone over there and felt this bad all from that .... on top of the Lyme treatment, then only to come back home still being exposed to the mold and wondering why I wasn't 100%.

I really feel that I'm pulling out of the detox. I'm feeling a lot better, though very toxic. I'm taking chlorella and some zeolite. I'm giving up on the cholestyramine, for now anyway. Dr. Shoemaker says it can stir up the Lyme toxins, so that might be the problem. If the German treatments don't take care of the mold, too, I'll take the cholestyramine when I return, but the German treatments are supposed to help with that, too.

Anyway, busy day, can you tell I'm feeling better? LOL I haven't had to take pain pills either.

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Welcome Mysty

My neck and back have been so messed up! The massage last Friday made it worse I think. I don't know whats going on! And I feel like I am getting some of my other wierd symptoms too. I am wondering if its adrenal related.

...

I am wondering if mold is around me somewhere causing this.

I think mold is a huge factor for my neck issues.

I will email or text Carla so she can update you guys as soon as I'm able. :)

Yes, we'll be thinking about you and worrying. I'll be praying. I like your team of doctors!

Anyway, busy day, can you tell I'm feeling better? LOL I haven't had to take pain pills either.

Yay, great news!

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Kassandra, I'm relieved that Dr. H is very on top of things and that you won't be having those iron IV's any time soon. However the iron level problem sure needs a solution. Does Dr. H think the thyroid connection mentioned by Nora might be a possibility? Could it be iron loving bugs in the gut that could be tested for?

Good practical way to spend your energy--that food will come in handy when you come home if not in the hospital.

Hope very much that the surgery is the easiest one possible, that all goes smoothly.

Lots of best wishes and encouragments to hang in there!

Ditto Kassandra! :)

Carla,

Soooo glad you are feeling better and you've discovered the source of the D. Can't wait to hear all about your trip in a few weeks. :D

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Still haven't heard from Kassandra yet.

I feel fine when I'm at home relaxing. I left for a while and realized when I tried to converse that I'm a bit spacey. I'm also sore. I ended up taking a painkiller. I'm doing a lot better, but feel toxic ... like a hangover type thing. Maybe I'll buy some charcoal to see if that helps.

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She'll probably be "out of it" for a while today.

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Kassandra,

Thinking about you today, i pray everything goes great today.

I finally went and bought some air purifiers today. I hope it helps me breathe so much better.

paula

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One time I read about some autistic kids getting worse when they were put on the gluten-free/casein free diet. Apparantly it was because they needed the nutrients they were getting from these foods....and so they deteriorated when they were removed from the diet. These were non-celiac kids.

I'm gonna ask that new voodoo doctor and also Dr. P....to see if they think its possible.

Hey everyone,

Yeah this theory I really believe and actually have been thinking about for awhile. I went back to eating foods that I had restricted from my diet before.

Like today I was feeling very sick and toxic, especially from the room I sleep in at my grandma Lupe's house and so I went to Whole Foods and bought a Zone bar, organic of course, made with grains and nutrients and the neck pain, plugged ears and toxic feeling and headache went away. :huh:

I felt so much better. My mom always kept telling me not to restrict myself to much because then your body won't be use to those foods that I need and it would take me awhile to get use to them again. If that makes sense.

Oh by the way I went to the old spaghetti factory and ate baked chicken with spaghetti. No brain fog or any real reaction. But it took a truckload of christians to pray over it. I needed to rebuke those toxins. :D

Yeah you should definetly bring this up to Zelda lady and Dr. P. :)

Hey Carla, I went to choir practice too last night. I love being in choir. I played the piano too. Do they use fog machines at your church? They do in mine sometimes when we are worshipping and it burns my eyes.

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Kassandra hope all is okay. I will keep you in my prayers.

Julie??Jin???

Can anyone else see my 33% warning or is it just me???

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Can anyone else see my 33% warning or is it just me???

Only you and the moderators.

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