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

Rachel--24

Omg...i Might Be On To Something

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Kassandra, it is so great to see more and more good news from you. Hang on for the herx from the babs, treatment, but after you get through some of that you'll start to see proof of getting better. You'll be off to college soon with high energy!!

Sherry

Thanks Sherry! :) I am starting to become more hopeful that this will happen too! :D:P

Everyone,

I have semi-bad news/funny news to report. I took my Ambien last night at around 10 and NO JOKE, 5 minutes later, I could not walk! I was TOTALLY DRUNK off of Ambien! :ph34r::lol: :lol: Literally, my mom had to walk my upstairs into bed and then I couldn't sleep. I was laughing so hard, it was funny, but I thought I was dying! ;):ph34r:

Then, I called my mom into my room, so she could stay with me. We think it's because I was on a totally empty stomach, but we're not sure. It was only 5 miligrams anyway...so I can't imagine it being THAT strong! :blink: Then I started to freak out and think my PICC line was making me really sick, and I was dying because I had reallllllly bad air hunger and my heart was freaking out, beating really fast. OMG, it was AWFUL!

I called my friend and sounded totally drunk, she was freaking out! She was like, "Uhhh, call me later Kassandra!" :lol: I don't get why people like getting drunk! Ugh, I seriously thought I was dying! :unsure::ph34r::o

Carla, Have you ever had that happen? It was really scary.

On another subject, OMG Mepron is SO expensive! Holy crap! It's literally $564!!!!!!!!!!! Ahhhhh! We are going to have to figure something else out! That's only for 42 days of it! Carla, how much did you pay? You can PM me if you want. I am wondering if it's our insurance or if it's just really expensive?

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Kassandra, I've never had that happen from the Ambien. There is a thread on LN about how Ambien is used to clear out excessive ammonia, so I'm wondering if that kind of detox was having an effect on you. It does make me a little incoherent if I try to stay up after I've taken it. Adam will talk to me when we've gone to bed and he quickly realizes I'm too out of it.

Mepron is very expensive .... if you take 2 tsp. twice daily it's about $2200 without insurance. I only had to pay $25 per month for it. It's worth it ..... it's both your insurance, and it's really expensive.

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Carla,

Thanks about the Ambien. I will check out that thread. It was very scary, especially because I had chest pain earlier in the day and the Hema had just told me about people dying from PICC line infections. Ahh!

Mepron is SO expensive! I can't imagine only paying $25 for it! You're SO lucky! I wonder if there is anywhere we can get it for cheaper. But the weird thing is Zith was $264 last month and now for the brand name it's only $78! I don't understand what's going on! Maybe this deserves a call to insurance company. I'll ask Dr. H also if maybe we can get it pre-authorized and see if that makes a difference.

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My family all have one or two celiac genes, but according to enterolab only hubby wasn't reacting to gluten. All the rest of us came up with it on ELISA and/or ASYRA testing. Whether it had progressed to celiac in any of us, I don't know. We will remain gluten free due to the reactions to begin with. Also, my brother had something that looked like DH that has gotten better since he's gone gluten free. He still eats some fast food though so I think cc is still an issue with him.

Don't forget the mold. The mold could be causing you all sorts of problems too. The thing is to supplement and support your body so you can heal.

Andrea, I am still going to get the vents cleaned and have the house checked for mold, Im still going ot keep mold in the back of my head to check out if i dont continue to feel good. But so far so good, i have done more with my kids and hubby the last 2 days then i have in 2 months. It is so nice to be happy and feeling good again. I know i felt good for awhile when i went gluten free, but this time is a little different., but maybe that is cause this house is now gluten free and i cant get sick lol

paula

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Paula,

I thought about it after I posted and thought that I probably misunderstood, lol. I am not a diagnosed Celiac either. I have one celiac gene and one "intolerant" gene. I'm pretty sure I have it though, or at least a strong possibility towards developing it. I think my mom has it too.

Kassandra,

That's a little scarey, lol.

and :o on the mepron! Wow! I won't complain about any of my stuff again! :lol:

Everyone,

Just got home from another wonderful full body massage! Yay. She did my stomach again and she actually commented that it didn't seem as congested this time. I'm not exactly sure WHAT was less congested, but that was after I asked her what organ she was massaging and she said stomach/intestine. So, now I've had my epsom salt/baking soda bath and I'm just going to relax the rest of the day. The bath made me dizzy and weak again, but fortunately it was after I'd been in for 20 minutes.

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Paula, I put myself in the probable celiac category. Because of being overseas I didn't have the biopsy, just went to the diet after Enterolab positives across the board (plus double DQ2 genes). Also the GFCFSF diet is the most significant change I've made in treatment over the past year. When my lyme recurred, I was back on the same meds I had been on over the past several years.

So the progress I have made this year, even though up and down, points to a positive dietary response. Constipation has improved, fatigue and energy/wellbeing improved overall, nausea has improved. Plus I went through a lot of transitions--skin changes, constipation to diarrhea back to constipation, etc. I am waiting to redo my malabsorption test to see if that has improved. If it has, it will be another positive indication because again, there hasn't been all that much other change in my regimen. A few supplements have been added, mostly for gut healing.

Maybe someday they'll come up with a test that doesn't require months of eating gluten, and is more reliable with less false negatives.

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Kassandra, I've never had that reaction to Ambien, either. Just the slight grogginess, unsteadyness if I get up to the bathroom not too long afterward. Also I don't get such an immediate response.

You have an epi-pen, right?

I get into bed right away when I take my Ambien, sometimes even before I take it. A lot of times I don't take it until the middle of the night.

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Kassandra,

Ambien has made me feel that way. Drunk feeling within 5 minutes of taking it.

I didn't get the heart racing and the breathing issues though - that is scary! Anytime I get breathing issues I get freaked. :(

Maybe try 1/2 tablet next time. I used to split my tablets up into 3 and 4's. I can't remember the mg but I think it was 5 mg.

Paula,

Its great that you are feeling better and yes you can get candida from being celiac. Being celiac and going undiagnosed and eating gluten can alter the gut flora over time leading to yeast overgrowth. There could be other factors that cause it too, but if the anti-candida diet is helping then that is a good sign!

What did your ND test you for again? I missed that part. I thought I was celiac when I was having all those reactions to gluten, but it turned out it was candida and other underlying issues. The candida diet helped me A LOT during those times, but I still have more work to do on metals.

Everyone,

I am doing the DMSA challenge test today for metals. Its not too bad.

I am thinking I might not do the fat biopsy. I want to ask the dr if that will change the protocol that he would put in place. I am going to do all the other tests including lyme. I also got to ask him what that $400 included for the lyme test. Might not include any co-infections. I don't know...I am so confused - like Paula's Name!

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The B12 is good for the liver detox pathways. That and b6 and some others. That is all what my ND recommended for mine since they are sluggish. That might be why its good for people with lyme.

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If it's an IGeneX test, it's just the complete Lyme panel. I'd just ask for the Western Blots, I found the other two tests useless.

The coinfections are around another $400. :(

I wouldn't be too happy about doing the fat biopsy either.

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Kassandra, I've never had that reaction to Ambien, either. Just the slight grogginess, unsteadyness if I get up to the bathroom not too long afterward. Also I don't get such an immediate response.

You have an epi-pen, right?

I get into bed right away when I take my Ambien, sometimes even before I take it. A lot of times I don't take it until the middle of the night.

Yea, it was really scary! And, I do have an epi-pen!

Everyone,

I just talked to my grandparents, and they said to find out how long I will need to be on the Mepron and they'll pay for it! :D:P Well, gtg see my brother in the hospital! :(

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I am doing the DMSA challenge test today for metals. Its not too bad.

I am thinking I might not do the fat biopsy. I want to ask the dr if that will change the protocol that he would put in place. I am going to do all the other tests including lyme. I also got to ask him what that $400 included for the lyme test. Might not include any co-infections. I don't know...I am so confused - like Paula's Name!

Is that the orange jug?! :P I have not met the orange jug YET, but I know there is one in my future for sure, lol. :lol: I'm thinking the $400 didn't include the co-infections. It could be the 2 western blots, and maybe they did a C.D57, or PCR or something.

The B12 is good for the liver detox pathways. That and b6 and some others. That is all what my ND recommended for mine since they are sluggish. That might be why its good for people with lyme.

Okay, good, I'm NOT losing my mind then...I thought it must be something like that.

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Alright, I guess I'll put up a general update as things currently stand for myself...

I haven't gone back on ABX since the 2 months of mino I took during the summer.. I was considering trying doxy a couple months ago but decided against it for the time being for a couple reasons... the only supplement/meds I'm currently taking to target lyme, candida, metals, etc. are cat's claw, though at a low dosage, and probiotics... I'm still taking a multi and coq10 as well

I went in October for a session for the testing I mentioned a couple months ago... it's bio-energetic testing and from the methods and equipment used, it doesn't seem that there would be much of a difference as to who was conducting the testing as opposed to some of the other testing techniques... this link gives a basic description of the testing

I haven't exactly made up my mind as to how I feel about the testing and haven't spent any time researching the methodology and science behind it since my session... regardless though, it doesn't seem like it gave me much useful guidance in how to treat right now since the basic results of the testing were to not take ABX and just be on a candida diet, free of most foods outside of meats and veggies, which is what I've been doing nearly the entire year anyway (with the exception of the 2 months of mino and a few months of eating potato chips at times as my only cheat food)...

no lyme, co-infections, metal, or parasite issues showed up during testing, just a lot of candida issues in different body systems... on the other hand, testing of my supplements did mostly match up with how I felt about them... however, I didn't really get a good or IMO adequate explanation from the practitioner as to why I would have had the balance symptoms within 2 days of starting the mino, and then whenever I tried to bump up the dosage as well as at times months after stopping the ABX...

either way, I decided to eliminate potato chips a couple months ago and continue with the rest of my diet, which is strictly meats, certain spices, green veggies, and water (with a very small amount of sugar from glee gum)... I've also likewise continued with a largely regulated sleep schedule and a combination of b-ball, lifting, and the elliptical a couple days a week, which I've been doing pretty much every week for a year now, except for a couple weeks in october after I woke up with a torn ligament in my toe (no, not a misprint, somehow I went to bed fine and had a torn ligament when I woke up :blink: )... at times I've used detox foot pads and at times I've drank water with lemon as well though I go back and forth on both as to whether they're good, bad, or indifferent for me...

I have been making progress the past couple months and am working the most hours I've worked in over a year... I've also started feeling a bit better overall with the balance symptoms I got from the mino decreasing in frequency and severity and my neuro symptoms showing slight improvement... hypoglycemia is still, of course, absurd, necessitating me eating 7 meals a day...

I'm now back to the point where I'm again looking to learn more about what may benefit me and expand my treatment protocol... whether it entails incorporating another dr./practitioner or simply discussing things with my current "staff" and adding in a few things, I don't know...

however, I do know that I don't want to take a step back to take a step forward now so I don't plan on trying anything I deem to be potentially of that nature, like a different ABX for instance... down the road, if I feel it's necessary is another matter, but as of now with the gradual but steady progress I'm making, I only want to add treatment options that keep me going in a straight line forward and that I would cut off after a couple days if I feel that they are causing me adverse effects...

I have some different questions to ask, but I'll save that for a later post...

as for my sister, she's doing well... really well in comparison to how she was pre-germany... she went from 20+ meds daily down to under 5 per day (though I think she could probably still get down a couple more as I don't think 2 or 3 of her meds are necessary)... all of the RSD pain went away initially though one element of it, the hypersensitivity, has returned in her left arm to a degree... she is undergoing treatments locally to help eliminate that again, and hopefully these will be successful, but either way, this is a massive improvement from the full-body, very painful RSD she had beforehand...

she's starting up aqua-therapy to help regain her strength, and later more extensive physical therapy as her body can handle it... when she was over in germany for the procedure, she was in a coma-like state 2 weeks longer than anticipated as she caught a bad case of pneumonia during the procedure... as a result, she lost about 25-30 lbs (and she was on the thin side to begin with) and all her muscle mass... took her a week or so to even be capable of taking a few steps walking after getting out of the coma.. she's since regained about 10 lbs and a little bit of muscle, but she still has her work cut out for her for quite a while in this regard...

as good as the pain improvement has been, perhaps it has been just as beneficial that she also now has a working GI system as opposed to one that wasn't working for years and was getting worse and worse over time... that was probably largely due to a combination of the RSD and meds she was on... also, when consulting with her RSD doctor in the states after returning, he advised her to eat a high protein diet and to not get the flu shot, so no arguments from me on those fronts... guess I can still agree with conventional western MDs at times...

oh, and she also was in the newspaper again as she was instrumental in getting a state bill signed for RSD awareness and was with the governor for the signing... unfortunately, neither her nor my parents asked the governor why NJ just added 4 more vaccines to the mandatory childhood schedule, including being the first state to require the flu vaccine, but I suppose that wouldn't have been the proper venue to ask these questions... of course, I wouldn't have been able to help myself if I was there B)

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OMG!! :o

You guys wont BELIEVE this!!

Yes Andrea....I'm REALLY living it up in the food world now!! :D

Ok...today I went to the movies...ate regular movie popcorn... and lots of it!! :P

I felt pretty good...no bad reactions...maybe my glands felt a little swollen for a short time but that was it...nothing like my past experiences.

Then my friend invited me to Fresh Choice. OMG....my first restaurant in almost 3 years!! :o

I accepted but did not plan on eating...well OK...that really only lasted until we walked in the door and I saw the food. :lol:

Last time I ate out was at Dave & Busters almost 3 years ago...it was a major heinosity. I got really messed up...barely found my way to my moms house and the minute she saw me she decided she was taking me to the ER.

I started my anti-candida diet shortly after that and have not eaten out since.

So I totally passed up all the salad stuff...no veggies for me. :P

I was afraid of the salad stuff and all the dressings, etc...veggies mess me up for whatever reason...I knew there was some reason I avoided them all my life! :lol:

So yeah..I went straight for the pizza, breads, pasta, etc....yup...no wonder the beasties love me so much!! :lol:

I had cheese sauce on my macacroni noodles, breadsticks, pizza, cornbread, rice and plain pasta w/out sauce. That was basically just to "test the waters". ;)

I ate it all and was still feeling fine...no symptoms popped up. So I went back and got more of everything plus a few other things.

After that I had soft serve ice cream with caramel topping...and some tapioca pudding!! :D

OMG...can you believe all this!! I freakin ate lunch at a restaurant today!!! :blink:

I couldnt finish all my ice cream because I was feeling full in my chest... heartburn maybe?? I dunno...but it started to hurt when I tried to keep eating....so I stopped.

So that full feeling in my chest (like I needed to burp) lasted about a half hour...then I was fine. I also got a very mild headache. Thats pretty much it....and I ate like a normal person all day....well except for breakfast (which was beef and peas :rolleyes: ).

I'm pretty excited about this. Hopefully I'm still feeling good tomorrow. The most surprising thing is that I didnt get brainfogged...and I was also around perfumes today without having bad reactions.

The headache is the worst of it (so far)....its basically from the swelling that I get in my head.

I dont know what to think...am I getting better?? :unsure:

Its been about 3 weeks now that I'm eating alot of normal foods without too many problems. I dont know if the chelation is helping or whats going on. I think if I ncan handle the parasite treatment and if it gets the job done...I'll be making even bigger improvements.

I cant be too sure how significant the parasite problem is...all I know is that it *feels* like this could be contributing to alot of my immune dysfunction. I think it could be a huge burden so I'm very excited to see how it turns out. I start in one week....I'm excited but also very nervous.

Its been awhile since I've felt REALLY bad....so I'm just mostly afraid of revisiting all of that once I get on the alinia.

Yup...I saw Donna again yesterday. This time I recognized her immediately. :P

I didnt have my favorite nurse yesterday and things didnt turn out as well as all of my previous treatments.

First...the needle hurt a little so I was off to a bad start. She pushed the DMPS in alot faster than I'm used to. She did do it slowly....but I'm used to it taking about 20 minutes...last night it was about 5 minutes and I was done.

When she pulled out the needle I said "But what about the other stuff??" :huh:

I always get a homeopathic type antihistamine immediately after the DMPS...to calm any immune responses. She forgot to do it!! :o

She said "Well....I guess this will be an experiment to see if you react to the DMPS at all....maybe you dont even need the antihistamine."

But I didnt want to experiment because I had movie plans for today!! :rolleyes:

So yeah...I think I probably had a very scared look on my face. I wanted her to put the needle back in and give me the stuff!!

I did feel reactions...minor head swelling...my typical reactions that I get to anything that irritates my system. I have never had that after my DMPS treatments....so obviously I learned with this little "experiment" that the antihistamine stuff is my FRIEND...and I NEED it!!

Hmmm...I wonder if I can give myself shots of this stuff after I eat too! :lol:

So thats my unbelieveable news of the day....I ate OUT....Rachel got to rachel *real* food outside of the house!! Maybe I'm not gonna be so "trapped" by my diet restrictions that much longer....maybe I'm getting my life back little by little!! :D

I had a really fun day. :)

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Rachel, congratulations! You'll be getting more than your life back little by little, you'll be getting your weight back, too! :lol: :lol:

Charlie, thanks for the update. I'm glad you're doing better all the time. :)

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Well, gtg see my brother in the hospital! :(

What happened to your brother? :(

Charlie,

Great to see an update for you. Sounds like the herbal protocol will go easier on you.

Rachel,

:o:o I can't believe all you've been eating! :huh: But I'm happy you've been doing so well. :D:D

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I have been making progress the past couple months and am working the most hours I've worked in over a year... I've also started feeling a bit better overall with the balance symptoms I got from the mino decreasing in frequency and severity and my neuro symptoms showing slight improvement...

Great news Charlie!

I'm happy to hear from you and I'm glad that you're making progress. :)

I havent been on any abx or any treatments which have made me feel bad...I feel the same way about not wanting to take the step back in order to take the step forward. I really feel that there are ways to get around that.

I'm gonna start taking a strong prescription antiparasitic med next week....I'm really worried about how well my body will tolerate it.....mostly because if I have a heavy load of parasites the drug will hit them hard. I'll only be taking it for 3 days with 3 weeks off in between rounds....so I'm hoping it wont be so bad.

Last time I took anything pharmaceutical to kill bugs was 2 years ago...Metronidazole...and it was NOT fun at all. It was 2 very long weeks...I couldnt wait for it to end. It was the 3rd day into treatment that I started to get all kinds of symptoms like dizziness, nausea, depression, etc. After that treatment I had no change in symptoms...I didnt feel any better or any worse. I'm hoping to see something positive after going after these parasites (beef tapeworm was found in ART).

I think the things that you've been doing are helping...and I'm happy to hear you gave up the potato chips for now. :)

Your sister is very brave!! I'm so happy that this procedure was a success!! Her story will no doubt give many others who have this condition lots of hope. :)

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Rachel, congratulations! You'll be getting more than your life back little by little, you'll be getting your weight back, too! :lol: :lol:

YAY!! :D

I think I'm feeling a little better eating alot more foods...possibly because when my diet is really restricted the tapeworm is getting most (if not all) of what I'm taking in. I feel like since I've expanded my diet I'm eating so much more food (because I dont ever get full and I have more options)....I think I might be eating enough so that I'm actually getting some of it for myself! I've gained about 6-7 lbs...but I have to eat a ton to maintain it.

The only bad thing is the little immune responses I still get...mostly the head swelling....thats been a constant problem.

I feel like I must be less toxic because my skin isnt really burning even though I'm eating all this food thats not organic. My eyes havent been blurry and they arent burning like they normally would. Blurred vision and light sensitivity were two major symptoms that always popped up when trying new foods. Also, I'd *always* wake up with numb hands after eating normal foods...so far it hasnt been happening! :huh:

WOW!!!!!!!! that's all I can say Rachel.

OMG...me too!! I just cant believe it...I ate 4 pieces of pizza today and nothing bad happened!! :blink:

It doesnt even seem real to me yet. I've talked about eating pizza for so long now and here I am finally doing it....but it hasnt really sunk in yet!! :huh:

so yeah...all I can say is WOW!! :blink:

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What happened to your brother? :(

He finally was admitted to a psych hospital/facility. It was very emotional to see him, and then talk to my uncles afterwards. I have a headache from crying. :(

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Rachel,

That's awesome!!! :lol:

Kassandra,

I'm sorry about your brother. It might just be the best thing for him right now. A couple of my friends, and myself included, have been there. It was a painful, yet very healing experience in the hospital. I hope he's open to benefiting from it.

Carla,

Nice to see you in the chat last night. :) Sorry I wasn't around much. Couldn't keep up with the moving wordy things on the main window and was in IMs with Dave. We had a very nice conversation and he's really quite a sweetie.

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