Jump to content
  • Join Our Community!

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

Rachel--24

Omg...i Might Be On To Something

Rate this topic

Recommended Posts

April,

I hope your doctor is willing to start the amoxi while you're waiting for the test results from Igenex.

Share this post


Link to post
Share on other sites
Guest tamedandfoxed
Its because if there is insufficient sulfate in the system it will impair the kidney's ability to remove oxalate from the blood and into the urine.

Also, even though its definately important to replenish acidophilus and bifidus...they prefer other foods over oxalate....so they are only mediocre at degrading oxalates. The main bacteria for getting this job done is oxalobactor formigenes. It needs oxalate in order to survive...so if there is plenty of this bacteria available a person can eat plenty of high oxalate foods without any problem.

Lots of antibiotics can kill off this oxalate eating bacteria and as of now it is not available in any probiotic. It is currently being developed and will be sold as a drug (and no doubt it will be expensive).

Tetracycline

Doxy

Flagyl

Biaxin

Augmentin

Erythromycin

Chloromycetin

These are just some of the abx which can kill it off. I took the 3 which are highlighted.

RACHEL PLEASE TELL ME MORE ABOUT THIS!!! I was told to experiment with a low-oxalate diet...but i found i couldn't really eat anything (except meat, which got old really fast) because of the candida diet... i tried just pretending not to need the latter diet but really wasn't the best idea! as i got an increase in symptoms.. The Drs put me on this drug called Lyrica ($40!!) that is used for treating nerve damage with shingles and fibromialga.... i'm like.. OKAY?? why are you giving me this?? worth a shot i guess... shot in the dark..

so if this oxalobactor formigenes is not available in anything--how do you get it???

I think Beta Strep is something that pregnant woman are tested for. I was positive both times and had to recieve IV abx during delivery. Hmmmm.....I haven't studied much on this. Will probiotic d%$#@#$ help? Might be something to look into.

Yes you are absolutely right and they felt the need to ask me every 5 seconds if i was SURE i wasn't pregnant... i told them "I don't sleep with men, ever, no unless it's immaculate, i'm not FFFFF PregnanTT!!" ggrrrrrrrrrhisss.. how would you do a probiotic d%$#@#$?? I tried just plain (but good) yogurt a few months ago but didn't have a method for uh.. getting it UP there..

Sorry you didnt make it to Texas. :(

Hopefully the new doctor isnt gonna throw more abx at you. REFUSE THEM ALL! :angry:

OK...I had to remind you now because I might forget by Sept. 11th. ;)

yeah.. it sucks.. but i'm going to use the week to start packing for my new apartment, since i'll start work next week and wont have time/energy then! but i'm still going to chicago!!

Jin--I'm so sorry your family isn't supportive. Mine has been immensely supportive for the most part, especially with money stuff... but lately my dad has begun to be like "So, when is this all going to be better??" I'm like uhhh. if i knew that, i prolly wouldn't be so cranky all the time!! I agree with others, the nanny job sounds excellent and moving out is probably the best thing you can do right now. you gotta find people who can support you emotionally. good luck!

~Katy

Share this post


Link to post
Share on other sites

UGH! :angry:

The pediatrician (nurse of) called back and wants to wait until I get the test results back on the tick. He says that giving abx doesn't do anything anyway :huh: :huh: to prevent

But if the tick is positive then they would put her on a 6 week program of abx - (I thought he said abx wouldn't do anything). he doesn't want to treat unless that tick show positive.

I then said that its better to treat EARLIER the better before it goes into chronic stages.....she said he (the dr.) is from Connecticut where lyme disease is prevalent and knows a lot about it....

whatever......

Now what? <_<

Share this post


Link to post
Share on other sites
Yes you are absolutely right and they felt the need to ask me every 5 seconds if i was SURE i wasn't pregnant... i told them "I don't sleep with men, ever, no unless it's immaculate, i'm not FFFFF PregnanTT!!" ggrrrrrrrrrhisss.. how would you do a probiotic d%$#@#$?? I tried just plain (but good) yogurt a few months ago but didn't have a method for uh.. getting it UP there..

Go to Eckerd, Walmart, Walgreens - whatever is near you and buy the $5.00 hot water bag that has the d%$#@#$/enema kit in there. Dump out some probiotics out of the pill or powder works fine too. Mix it in some warm - not hot - water......

Maybe try it 2x a day for a week and if you start to notice an improvement then you could keep it up.

I read in a magazine that some people put yogurt on top of a maxi pad and let it sit.....sounds kind of gooey to me :huh: I would rather d%$#@#$ and get it over with!!

Share this post


Link to post
Share on other sites
Now what? <_<

Go to a walk in clinic and say you're concerned about Rocky Mountain Spotted Fever. By law they have to prescribe something for it. <_< Here's what the CDC says about NOT waiting for test results with RMSF:

Appropriate antibiotic treatment should be initiated immediately when there is a suspicion of Rocky Mountain spotted fever on the basis of clinical and epidemiologic findings. Treatment should not be delayed until laboratory confirmation is obtained.

If the patient is treated within the first 4-5 days of the disease, fever generally subsides within 24-72 hours after treatment with an appropriate antibiotic (usually in the tetracycline class). In fact, failure to respond to a tetracycline antibiotic argues against a diagnosis of RMSF. Severely ill patients may require longer periods before their fever resolves, especially if they have experienced damage to multiple organ systems. Preventive therapy in non-ill patients who have had recent tick bites is not recommended and may, in fact, only delay the onset of disease.

Doxycycline (100 mg every 12 hours for adults or 4 mg/kg body weight per day in two divided doses for children under 45 kg [100 lbs]) is the drug of choice for patients with Rocky Mountain spotted fever. Therapy is continued for at least 3 days after fever subsides and until there is unequivocal evidence of clinical improvement, generally for a minimum total course of 5 to 10 days. Severe or complicated disease may require longer treatment courses. Doxycycline is also the preferred drug for patients with ehrlichiosis, another tick-transmitted infection with signs and symptoms that may resemble Rocky Mountain spotted fever.

Tetracyclines are usually not the preferred drug for use in pregnant women because of risks associated with malformation of teeth and bones in unborn children. Chloramphenicol is an alternative drug that can be used to treat Rocky Mountain spotted fever; however, this drug may be associated with a wide range of side effects and may require careful monitoring of blood levels.

You can always start out with talking about Lyme Disease, but if they don't respond, bring up RMSF ... or go ahead and bring it up with the ped. .... call them back and say, now you're scared, you read about RMSF, and what if she has contracted that?

Share this post


Link to post
Share on other sites
Go to a walk in clinic and say you're concerned about Rocky Mountain Spotted Fever. By law they have to prescribe something for it. <_< Here's what the CDC says about NOT waiting for test results with RMSF:

You can always start out with talking about Lyme Disease, but if they don't respond, bring up RMSF ... or go ahead and bring it up with the ped. .... call them back and say, now you're scared, you read about RMSF, and what if she has contracted that?

In that article it says that

Preventive therapy in non-ill patients who have had recent tick bites is not recommended and may, in fact, only delay the onset of disease.
That's what the ped was saying.....But that is opposite of what I have always read......

She doesn't have symptoms at all as of yet.

Share this post


Link to post
Share on other sites
RACHEL PLEASE TELL ME MORE ABOUT THIS!!! I was told to experiment with a low-oxalate diet...but i found i couldn't really eat anything (except meat, which got old really fast) because of the candida diet... i tried just pretending not to need the latter diet but really wasn't the best idea! as i got an increase in symptoms..

so if this oxalobactor formigenes is not available in anything--how do you get it???

Have you been tested for candida...or is it an obvious "female" type infection?? I forget from your earlier posts. There is a link between oxalates and yeast...and some yeast/molds also produce oxalates. It seems to me that high oxalate foods can worsen the yeast situation for some people.

I'm not sure which comes first but if oxalates are a problem then yeast tends to go along with it. Some people have improvement with the yeasty symptoms when they go low-oxalate.

Unfortunately, until the drug is available there's no way to get oxalobactor formigenes. Its not available yet.

I think when it does become available its probabaly not going to be a "cure".....I think it will just help to reduce symptoms for those who are having problems with the oxalates. If this particular bacteria is wiped out....its also very likely that other beneficial bacteria are wiped out as well.....which means that there is a situation of dysbiosis and unwellness that will take some time to correct.

but lately my dad has begun to be like "So, when is this all going to be better??" I'm like uhhh. if i knew that, i prolly wouldn't be so cranky all the time!!

:lol: aint that the truth!

Yeah....let me just whip out my crystal ball and find out exactly when all this nightmare is gonna end. :rolleyes:

Share this post


Link to post
Share on other sites

What other diseases can cause anemia. My step-sons cbc came back today that he was anemic. He is still in denial about the celiac thing tho. Should i have the dr test for other vitamin deficiency or can parasites cause anemia and maybe do an stool test. She just said to give him an vitamin and he should be ok. Im not buying that.

paula

Share this post


Link to post
Share on other sites
What other diseases can cause anemia. My step-sons cbc came back today that he was anemic. He is still in denial about the celiac thing tho. Should i have the dr test for other vitamin deficiency or can parasites cause anemia and maybe do an stool test. She just said to give him an vitamin and he should be ok. Im not buying that.

paula

How old? My ND says low iron is common in kids because of the growth spurts. How's his diet? Does he have any GI symptoms that would indicate malabsorption?

Share this post


Link to post
Share on other sites

April,

I think its good that you sent the tick in.

I think if it were me I would have definately sent the tick in right away....I probably would have tested every infection (for peace of mind).

Personally, in the absence of a rash or symptoms I'd probably wait for the results before taking any abx. I think the results should come back fairly quickly. I dont know how long it takes but you can call IgeneX to find out. I know I got all my IgeneX results back quickly but the lab is right here in my area.

If the tick wasnt available for testing I know I'd want abx right away. I wouldnt assume that no symptoms = no infection....and I wouldnt want to wait for symptoms to appear (which might not be until years later)....so I'd really have no choice but to get on the abx.

Obviously if you see any symptoms from now until you get the results you should get her on the abx right away.

Its hard to know what the right thing to do is so you just kind of have to go with what you feel is best. If another Dr. is willing to give her abx.....then that might be the best thing.

Share this post


Link to post
Share on other sites
What other diseases can cause anemia. My step-sons cbc came back today that he was anemic. He is still in denial about the celiac thing tho. Should i have the dr test for other vitamin deficiency or can parasites cause anemia and maybe do an stool test. She just said to give him an vitamin and he should be ok. Im not buying that.

paula

Yes, parasites can cause anemia. Has he been tested for Celiac?

I dont agree with the Dr.'s advice. :blink:

I dont buy it either. <_<

Share this post


Link to post
Share on other sites
Yes, parasites can cause anemia. Has he been tested for Celiac?

I dont agree with the Dr.'s advice. :blink:

I dont buy it either. <_<

He has been tested 2 times.

The first time only igg was high

the second time he showed iga deficient

He also tested postive threw enterolab and carries an gene.

Havent taken him to an gi dr.

He also showed anemic the first time celiac panel was run, but the drs never told me. The second time he was normal in the anemia department.

paula

Share this post


Link to post
Share on other sites

April, the article contradicts itself! Ugh! I guess they're saying treat in the presence of symptoms.

Well, it's from the CDC, it's not what the LLMD's practice.

It took me 2-3 weeks to get my IGeneX test results back.

Share this post


Link to post
Share on other sites

April,

He just turned 15.

I also wanted to say i hope you get some answers about the tick situation, I know nothing about lyme at all.

Rachel,

Do you think i should do an hair test on him? Im just trying to figure out where to get hair from him, cause he is pretty bald on top and not sure about hair anyplace else.

paula

Share this post


Link to post
Share on other sites
What other diseases can cause anemia. My step-sons cbc came back today that he was anemic. He is still in denial about the celiac thing tho. Should i have the dr test for other vitamin deficiency or can parasites cause anemia and maybe do an stool test. She just said to give him an vitamin and he should be ok. Im not buying that.

paula

If he is anemic because of lack of red meat or poor diet, then a vitamin with added iron should do the trick. If that's not why he's anemic, then it could be the lack of strictness with the gluten free diet, or it could be a parasite, etc.

Share this post


Link to post
Share on other sites

Been a while since I posted here though I skim through the thread occasionally. Hope everyone's doing well.

Quick question. Looks like I'm going to try the Humaworm product that you all have spoken so glowingly of. :rolleyes: I know that Carla and I think Donna at the least have tried it but don't remember who else has. Anyone had any adverse reactions or lost weight or anything from it?

I generally try to stay away from both foods and supplements with a number of ingredients though I've been expanding my diet a bit recently. I also don't want to drop even a couple more pounds as a result of taking it as my weight is getting dangerously low. I'd like to also do a bit more research into the ingredients in it to see what their purpose is, how they interact with each other and with one's body, if there's legitimacy to points I've seen raised of the ingredients themselves contributing to what is consequently expelled from the body, etc., but there's of course only a finite amount of time and I'm allocating that elsewhere.

Anyway, just wanted to get a few additional comments from those who have tried it though I expect I'll order it and give it a shot regardless. Thanks.

Share this post


Link to post
Share on other sites

Charlie, I gained almost ten pounds after I took Humaworm. :) Getting rid of that tapeworm helped me gain weight and allowed me to eat less.

Look over the ingredients .... if there is anything you can't tolerate, they will leave it out.

It didn't get rid of all my parasites .... Later when started taking Enula, I passed many roundworms.

It's not wonder I had so many GI issues!

Did the format here change????

Share this post


Link to post
Share on other sites
Did the format here change????

I dunno?? Something looks kind of "off".

Is it usually green in bewteen posts....it seems like the posts kind of blend together.....or maybe its just me thats a little "off" today? :unsure:

Share this post


Link to post
Share on other sites
April,

He just turned 15.

I also wanted to say i hope you get some answers about the tick situation, I know nothing about lyme at all.

Rachel,

Do you think i should do an hair test on him? Im just trying to figure out where to get hair from him, cause he is pretty bald on top and not sure about hair anyplace else.

paula

Paula,

The mold problem can affect the kids too. It can increase the probability of fungal issues in the body which can lead to all sorts of things.

I agree with you though, the doctor could be ignoring an important piece and why didn't they tell you he was anemic the first time!

If he is anemic because of lack of red meat or poor diet, then a vitamin with added iron should do the trick. If that's not why he's anemic, then it could be the lack of strictness with the gluten free diet, or it could be a parasite, etc.

Kassandra,

How are you doing?

Share this post


Link to post
Share on other sites
Been a while since I posted here though I skim through the thread occasionally. Hope everyone's doing well.

Hi Charlie. :)

I have no experience with Humaworm....just saying hi. :D

As far as I know April is the only one here who tried it and had a negative reaction.

Share this post


Link to post
Share on other sites

For those of you asking about the board format.

It looks like it changed back to how it was before the last upgrade......all the person's info on the left side instead of across the top.

Share this post


Link to post
Share on other sites
He has been tested 2 times.

The first time only igg was high

the second time he showed iga deficient

He also tested postive threw enterolab and carries an gene.

Havent taken him to an gi dr.

Definately sounds like Celiac is a possibility. Since he's IgA deficient none of the IgA tests would be positive but you could have them run the Celiac Panel for IgG instead of IgA.

That means that all the tests would be looking at the IgG antibodies....not just the antigliadin IgG (which is the one that was positive the first time).

It would probably be a good idea to take him to the GI.

I wouldnt worry about a hair analysis right now....he may just need to be gluten free.

Is he the one who was complaining of symptoms from smoke?

All of these things could be really stressing his system and it might improve alot if it turns out he has Celiac and eliminates gluten.

If thats the problem and it doesnt get addressed its not gonna help too much to worry about metals or other things because the gluten would still be greatly affecting his health. I think it would be a good idea to get that sorted out first.

Share this post


Link to post
Share on other sites

Talking about my mold. I was so pissed off yesterday. We have an shed in the backyard and it is full of our christmas stuff. Well my lovely 15 yr old decided to throw an old pool in the shed that was full of water. Well i decided to clean out the shed yesterday. Well im cleaning it out and guess what. All my stuff is full of mold. All my tree skirts and bulbs. I instantly got light headed and sick. I was in bed all night having an reaction. needless to say i had throw out 2 fake trees and all my christmas stuff. I even had stuff in plastic totes and somehow the lids were off. Have i said lately that i hate MOLD lol.

Today we cleaned out the garage, i was afraid to see what we would find. Thanks goodness no mold today.

paula

Share this post


Link to post
Share on other sites

Oh Paula! I would be livid! :angry: I'm sorry. :( I hope you don't have aftereffects from the mold exposure for to long.

Share this post


Link to post
Share on other sites
For those of you asking about the board format.

It looks like it changed back to how it was before the last upgrade......all the person's info on the left side instead of across the top.

Oh yeah!! Thats it Andrea....I thought my eyes were freaking out. :rolleyes:

I was thinking the posts weren't clearly seperated but it just appears that way because I guess I got used to seeing the avatars and personal info. up there. It takes me awhile to adjust each time. :rolleyes:

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.

×
×
  • Create New...