Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Nyxie63 Apprentice

Lisa,

Wow! That's great you feel good enough to work again! Let us know how your appt goes.

Carla,

Ugh and Yay! At least now you know. Hope the kidlet feels better soon.

RPM,

Sorry. I don't know much about hyperT. Do you have your latest thyroid test results? Would you mind posting them here? Maybe I (or someone else) can see something in them.

In other news,

I finally figured out what part of my problem is (besides the obvious). :P I have food anxiety. Not a big stretch, considering what I have to work with. Just takes me a little longer to arrive at these things.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
i need some help, i just remembered in bioset my thyroid came up as high...i had t4, t3 and tsh come back fine, is this surprising? the bioset lady said i should see somebody she knows that's a holistic thyroid doctor, but i just feel like my thyroid is cause of something...what things are possible to cause an overactive thyroid? because those tests coming back fine surprises me

I think you should ask your BioSET practitioner what she meant by your thyroid is "high". How would she determine that with her testing?

Are you sure that she was saying that you have an overactive throid?? Did she say that specifically?

If you did indeed have hyperthyroid it would more than likely be apparant in you lab results. A need for more thyroid is sometimes more tricky but too much thyroid in the blood would show up in tests....it always showed up in my own bloodtests with TSH being extremely low and T4/T3 being very elevated.

My advice is to not spend alot of time focusing on your thyroid right now but instead try to get to the root of your health issues.

confused Community Regular

Rachel,

Were did u get your bath ball that u use in the bathtub and how much chlorine does ti take out of the water?

paula

Rpm999 Contributor

rachel, i don't know, the first thing she did was run the organ panel and thyroid was one, and i even saw on the screen that it had one for low and high and it went crazy when she ran the one for high

it really feels like i have thyroid issues though, but like i said i think it's because of something...looking to get the tests ran again since the doctor i had wouldn't send them so i never saw them, and i'm pretty sure that's illegal but i'm not even going to waste my times...it feels inflamed in that area too, so i think i should get a scan

Rachel--24 Collaborator

OK...heres an update on my visit with Dr. S.

The appt went well....good discussions and more questions for Dr. Amy.

He actually agreeed to her plan of pulling metals out more consistently by adding in the transdermal DMPS on the weekends that I'm not doing any IV DMPS. He said as long as I dont use the cream within 3 days of having IV DMPS and as long as I dont do any mineral IV's while using the cream its fine.

I couldnt remember which brand Amy had recommended so after I talk to her on Monday I'll let him know and he'll order it.

We talked about all my new "ideas" regarding PST and the sulfation pathway. He was familiar with everything I was saying although he doesnt have any patients who are having such a severe problem with phenols.

He told me that I need to continue with all of my research and everything that I'm doing because he feels that I'm probably very close to the truth. Hearing that from him was very reassuring. He said that more than likely it would involve genetics and theres just still alot that they havent figured out yet.

I'm not 100% convinced that this cant occur without having genetic weakness but its something I already planned on asking Amy about. He said that if I was born with some weaker enzyme systems anything could have tipped me over the edge....an exposure to chemicals, heavy metals, a virus, lyme, etc.

He feels that I would have had to of had some weaknesses to begin with. I do think that he's probably right but I also believe if the exposure to metals is more than the body can process a weakness can develop which was not there prior to the exposure. It would probably have to be alot of exposure that was constant...enough to overwhelm the system.

This would probably only be possible if the release of metals during the galvanic reaction was really as great as I felt that it was during the year that I had the dissimilar metals in my mouth. If it wasnt significant then I believe a genetic weakness is the only other possibility.

So he told me to ask Amy if she feels theres a direct relationship between the metals in my body and this particular pathway given the high sensitivity to phenols.

He said he feels by supporting the pathway we can probably get all the metals out but he cant say that in doing that the problem with the pathway would be resolved. He said it depends on whether or not the metals are the actual cause of the PST deficiency in the first place and hes not certain that they are. There are other possibilities.

I told him Amy does not find Lyme to be a problem, I dont seem to have any issues with virueses...nothing else is showing up. He asked if she feels the metals are the main issue. So far in every ART session the metals have been the primary issue...and yes....shes always said its the main problem and we need to get them out.

He feels I should have had more improvement with the sensitivities after chelation but if theres a weakness in the pathway and its preventing me from excreting at a good rate....then that would explain it. I could have alot more mercury that needs to come out so I have to see what shows up with my ART session.

I *do* feel that if I can get the metals out I can strengthen this pathway....afterall it was working fine for 31 years. It may not have been 100% but it was functioning well enough that I was not sick...nor was I sensitive to anything.

He said that sometimes there can be signs that things arent right early on in childhood with things slowly deteriorating over time. This wasnt the case with me...I had no illnesses or allergy symptoms prior to this.

He said that nobody knows my body better than me and the best thing I can do is continue researching because as long as I dont give up the answer will come to me....and I may be very close to it already. He said my practitioners are very good and they will help me but noone can do more than what I can do for myself by being proactive.

So I guess all this obsession with scientificness might pay off someday! :)

He said that if I were to do nothing and just wait for things to happen....nothing would ever happen. In his experience its the ones who really start researching for themsleves that have the best chance for recovery. The Dr.'s can only do so much.

I agree with everything he said and I think if I were expecting them to figure out everything that went wrong with my body on their own...I would be disappointed. I think that even the most gifted Dr.'s need our help when things are as complicated as what some of us are dealing with.

Since I cant tolerate sulfur he wants me to try two other important amino acids for detoxification....Taurine and L-Glycline.

I got the supplements and will have Amy test them...if they dont work for me I can bring them back. :)

He had my Dr.'s data results but because we were talking the entire time I didnt take a real close look at them....but I did notice that they looked very close to what my last results looked like.

In the car on the way home I noticed that they looked EXACTLY like my last results. :unsure:

On the bottom of the page it said "faxed to patient 1-02-08". :huh:

So yeah...those results were from the provoked urine challenge that I'd had in DECEMBER!

They have a new nurse in the office who's being trained and shes the one who told me my results were in. They're actually not back yet. :(

So they credited my account for the cost of yesterdays visit. When the results are in I'll go back to see Dr. S. again at no fee. This works out well since I'll be able to talk to him about my visit with Amy and if theres anything she wants him to test or prescribe we can go over that during my next visit.

Rachel--24 Collaborator

Oh yeah...as far as the minerals being all completely messed up on my Doctors Data reports he said that those results mean absolotely NOTHING. :blink:

So thats a relief. B)

He said the only mineral they care about is copper because it *should* be elevated after being given the DMPS. He said that the only thing the results show is that I had an effective chelation treatment.

He said they would like for the lab to not show the other minerals because its not an accurate accessment and all they really want to see is the copper to make sure the chelation was effective.

He said there is always alot of confusion with the minerals on this report but it doesnt really tell us anything.

I asked him how do they determine copper toxicity vs. an effective chelation? He said other tests like hair analysis and he mentioned one other type of test (I forgot what it was) are helpful for that. As far as the provoked urine challenge they expect to see the copper very elevated.

Rachel--24 Collaborator
Rachel,

Were did u get your bath ball that u use in the bathtub and how much chlorine does ti take out of the water?

paula

Heres some info. about the bathball. I cant remember which site I ordered it from but if you google

"chlorine bath ball" you'll find some and you can compare.

Open Original Shared Link


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Rachel,

Still sounds like a good appointment, even if you didn't have the test results back. I'm happy to hear that you'll be able to go back to talk to him when the test results come in. Monday's almost here!

rinne Apprentice
Heres some info. about the bathball. I cant remember which site I ordered it from but if you google

"chlorine bath ball" you'll find some and you can compare.

Open Original Shared Link

Thanks for the link Rachel, I have been wondering about those bathballs. Have you found it makes any noticeable difference?

Rachel--24 Collaborator
Thanks for the link Rachel, I have been wondering about those bathballs. Have you found it makes any noticeable difference?

I cant tell if the bathball makes a difference or not. I actually wasnt using it at all until I started doing the epsom salt baths again in the last couple weeks. This is while I'm at my moms house.

At home I got a showerhead filter and I really do notice a difference with it. I noticed it immediately. I use the shower to fill up the bath.

Rachel--24 Collaborator
Monday's almost here!

Yay!! :D

Rachel--24 Collaborator

Hmmm...taurine is actually a sulfur containing amino acid...so I'm not sure how well I'll do with it. <_<

miamia Rookie

Hey all-

HAPPY EASTER!!!!!!!!

I got my bath ball from gaiam here is there site although their catalogue is more extensive Open Original Shared Link

I also got my foot bath from there

Rachel-

thanks for the update it sounds like you had a good appt.

I am currently taking a few weeks off chelation and doing a combo of deep tissue massage and colonics- I was feeling very toxic especially after the antibiotics and I am trying to deotx mmy body this way. I ahve to say I think it is very powerful and a very good alternative . (Plus I am not taking anything to remove the toxins- always a big plus!!!!)

Oh- did you guys catch that- I made it I finished the 3 months on Levaquin!!!!!

I had a really great appt. w/ a gastro- the one i had talked about before. He really explained things to me , and we went over my last upper gi and lower bowel along w/ the colonoscopy . I ahve started on reglen for my motility issues which are really att the for front of my discomfort. So as much as i hate taking prescription drugs I have my fingers crossed it will help me. I am on alow dose and we are just testing it for a week to see how I react.

Ok there is more but that is the major stuff.

Miamia

AndreaB Contributor
Oh- did you guys catch that- I made it I finished the 3 months on Levaquin!!!!!

YAY!!!! :D :D :D

Good news Mia. Hope the reglen works and doesn't cause problems with you.

HAPPY EASTER everyone!

We are heading to my moms so I won't be on all day.

Rachel--24 Collaborator

Happy Easter!!!!!!!!!!!!!! :)

Mia, Congrats on finishing the 3 months of Levaquin! Thats great news.

Everything sounds really promising...I'm glad you found a GI who's working with you on the motility problems too. Looking forward to hearing more. :)

Andrea, Have a good time at your moms. :)

confusedks Enthusiast

Happy Easter!!!!

CarlaB Enthusiast

Happy Easter, everyone!

Mia, great news about the Levaquin! So, how do you feel after three months of it?

aziza Newbie

My name is Aziza and I found out about Celiac Disease via a tv show, "House," which my eldest daughter was watching in November of 2006. That show changed my life. I became ill in 1994 with heavy menstrual cycles and other related symptoms that included severe fatigue. By 1995 I was also having spasms and had several tests for ms, lupus, cancers, cat scans and mri's. Everything was normal, my now ex thought I needed psychiatric help and so entered the psychiatrist who proceeded to have the mom your family needs you talk with me and put me on several meds to help me be a better mom and wife. By the end of 1995 I was told I had to stop working or risk death. I went home where I continued to have debilitating spasms that caused me to use a wheel chair and be home bound most of the time.

Fast forward to 2004 thanks to present mate who took me to specialists in upstate NY I began to have IV feedings weekly after having a serious bout of spasms. The specialist renamed them seizures caused by digestive issues. Now these nice folks never bothered to discuss celiac disease with me. I went in once sometimes twice per week for IV feedings and at times it was really hard to find a vein that would hold up for the feedings. In 2006 I relocated and it was in Nov. 2006 that my daughter saw the episode of house that changed my life, this came after I was in the emergency room the day after Thanksgiving with what everyone thought was a heart attack. Back in 2002 I was in the hospital after they thought I had had a stroke.

Thanks to the internet I researched celiac and immed. went on the diet. Within days I began to feel better, within a month I could play with my youngest child and was laughing. It was a miracle. I even began to lose weight. I was also furious, I called the so called specialists back in NY and asked (not quite that way), why hadn't they tested me for celiac disease, they said they did and it was negative. I asked why wasn't I told about it and given the option of going on the celiac diet. They gave excuses as to why they did not. However, they wanted me a vegetarian for over 30 years to go on a high fat diet consuming all meat especially red meat, but they did not bring up the celiac diet. This made no sense to me, I expressed my anger at the fact that these individuals took thousands of dollars from us and stated they would not give up until they found out what was causing my symptoms. Well that phone call was not received well.

I am here because I need help. I not only have celiac but am also allergic to dairy, soy, alcohol and latex. In the past few months I have been highly irritable and very uncomfortable in my abdomen. Back in 1998 I was to the point of eating baby food only. I am strongly considering that again. I have been to traditional doctors and non traditional, including acupuncture. I am feeling better with some symptoms but there are lingering issues.

I have been on the verge of tears and some sort of break down for days now. No one seems to understand what is going on with me. When I eat I also feel pain on my right side near the upper rib area. At this point eating is uncomfortable again. The seizures come and go, sometimes they are very mild, however, a few have really concerned me.

Your assistance is greatly appreciated.

Aziza

Rachel--24 Collaborator

Hi Aziza,

Sorry to hear all that you've gone through. :(

Have you been tested for gut infections? Bacterial overgrowth? Yeast? Parasites? You might still have ongoing issues because its possible that your intestinal environment is not in a healthy state which would prevent healing.

If you're still finding yourself reacting to foods and suffering from additional symptoms affecting other areas of your body its possible that you have leaky gut as a result of infections and/or poor digestion.

What kinds of things have you had ruled out?

ShadowSwallow Newbie

Happy Easter! :D :D :D

Mia, glad things are going well for you! :)

Aziza, welcome, you've come to the perfect place. :D:)

Rachel, I've found that the epsom salt baths are making a huge difference in my histamine levels (with them I don't break out into hives every time I brush my skin). :D However, I haven't found any pattern in the foods/things I'm sensitive to based on phenols. It's very interesting.

CarlaB Enthusiast

Aziza, welcome.

I agree with what Rachel said. Could be bacterial dysbiosis, could be parasites.

What are your symptoms? I know you named a few, but a list including all of them, perhaps some that might seem unrelated, would be a help.

ChicoYaYa Newbie
Oh...and here's another one...did you guys know that ALL baking powder (except one brand) is from corn??

I know that you can make your own baking powder, it just has 3 simple ingredients:

1/2 teaspoon cream of tartar

1/4 teaspoon baking soda

1/4 teaspoon cornstarch (aha! our culprit!)

Answers.com says that you need "a mixture of baking soda, starch, and at least one slightly acidic compound such as cream of tartar that works as a leavening agent in baking by releasing carbon dioxide when mixed with a liquid, such as milk or water."

I am wondering if you couldn't successfully substitute arrowroot, potato starch or tapioca flour... I think I feel an experiment coming on!!

curlyfries Contributor

Have you had your gallbladder checked?

miamia Rookie

oh guys-

i feel so misleading!!! I actually have been feeling really bad lately- I am just so happy to be off the antibiotics and i do feel good about my gastro so I guess you guys interpreted my emotional state which is trying to be positive- unfortunatly my body is still stuck in a very negative place.

miamia Rookie
Happy Easter! :D :D :D

Mia, glad things are going well for you! :)

Aziza, welcome, you've come to the perfect place. :D:)

Rachel, I've found that the epsom salt baths are making a huge difference in my histamine levels (with them I don't break out into hives every time I brush my skin). :D However, I haven't found any pattern in the foods/things I'm sensitive to based on phenols. It's very interesting.

Birdy-

For me the epsom salt/ beking soda baths i do life savers!!!! I do them everyday.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    2. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    4. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    5. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,145
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.