Well...even though intitial response to removing gluten from my diet was amazing...I'm still struggling. I'm still having sensitivities (both food and chemical), mild brainfog (comes and goes), and havent gained any weight. Some days are better than others. My doctors were the worst and I changed my medical plan but it wont take effect till the 1st. In the meantime I was in a nutritional store and came accross a flier for gluten rescources in my area. I called one of the doctors listed and had a consultation last night. It was great! For the first time EVER I felt like the doc knew what he was talking about and he understood all I've been going through. He was not a "mainstream" doctor and clearly did not agree with their methods of using drugs to treat symptoms. We were on the same page here.

He is gluten intolerant...as are his kids. He recommended that I read "Dangerous Grains" (I already have). He said from years of experience treating gluten sensitive's he believes that the authors of the book have got it right. He said non-celiac gluten sensitivity has the same symptoms and problems as Celiac but no destruction of villi. I dont know for sure what I have but probably non-celiac due to my genes.

Anyways he was very up to date in his knowledge....no "old school" thinking here regarding Celiac/gluten sensitivity. Gotta love that!

He told me that of all his GS/celiac disease patients only a very small percentage of them recover from just going gluten-free. He said he almost always finds infections such as parasites and bacteria. He feels 100% sure I have infections which are still burdening my immune system. Also other food intolerances, adrenal exhaustion among other things are *taxing* my system. He said that removal of these added "stressors" will allow my system to rebuild. Sometimes I question whether gluten is the *real* culprit here. He said undoubtedly it is but the complications now are a direct result of the stress on my body caused by the gluten intolerance. He said removing gluten lifted a HUGE burden off my immune system which allowed me to go back to work and make it through the day but there is still issues to be dealt with.

He said I am pretty much on the edge. If I do everything just perfect I'll do ok but if I skip a meal, stay up too late, catch wind of too much perfumes...I'll easily go over the edge. It was funny he said that because all of those things DO cause my symptoms to intensify. He said the reactions may seem as if I was eating gluten but its actually the immune system being overworked and the body not functioning properly...the symptoms are the same. So I probably havent been glutened as many times as I *think* I have.

He doesnt like to use allergy tests...like ELISA...he says they are not accurate and results depend on state of the immune system at the time. He prefers elimination diet for finding sensitivities. My ELISA results were negative for all foods even though I do react to lots of foods...he said this is exactly why he doesnt use those tests.

He says I can recover and he had one patient recently who was down to only 3 "safe" foods and was not doing well. He found infections in her and treated them and now she's doing great.

What do you guys think? Has anyone else been treated for infections due to Celiac? Do you think if an infection is found that it was a result from the intestinal damage caused by gluten? I still have malabsorption problems also...could an infection be contributing to that as well? I have been VERY diligent about gluten-free diet so I know I'm not getting glutened still...which is why I wanted to see a doctor for these ongoing problems.

I'm needing some words of encouragement today.

Rachel, this doctor sounds wonderful! I don't know the answer to the infections questions, but it does seem to make sense that there would be other things going on.

This doctor sounds like there is hope for the medical profession after all. I would like to know more about what kind of infections he is referring to and what to do about them.

Wow Rachel, I'm so jealous that you've found this doc! You've hit the jackpot with this dr. You are very lucky. Your story seems similar to mine. I still have sensitivities to certain foods, even foods that never really bothered me before going gluten-free. What he said made so much sense.

Keep us posted on your treatment regarding tests he does for parasites, your diet, etc. I often think there's more to this as well.

Charlene

Thanks for the responses. I will definately keep everyone updated as to what goes on with my treatment. I wont be seeing him again until after my insurance change takes effect but he will have a plan laid out for me of what we'll be doing. I think his first priority is checking for infections. Unfortunately his clinic is not part of a network so my coverage will be less. I was trying to get in to see a specialist at Stanford but it turned out she only sees patients who had a positive biopsy. I was kind of desperate when I called this guy's office. I figured I'd go to the consult. but probably wouldnt continue to see him since he wasnt networked. My feelings about that changed almost immediately after meeting him. I dont care if I have to pay some out of pocket as long as my health is improving. I was previously a Kaiser patient because the coverage couldn't be beat...but the care I recieved was horrendous...so definately not worth it.

I'm hoping this will be a turning point. I feel better seeing your positive responses. I have had such bad luck with doctors I really wasnt expecting this...especially since he was the first I've seen. I figured I'd have to go through several to find someone decent.

It should be interesting to see what he's got laid out for me. The purpose of the consult. was so that he could determine whether or not he felt they could help me or not. I guess they turn some patients away?? Anyways, it was suppossed to last only 20 minutes but he spent over an hour with me and he said he felt he pretty much knew exactly what was going on with me from hearing my story. He was impressed that I had figured out the gluten intolerance on my own. He said its difficult and the tests dont always determine it. He said MANY people have negative results to all diagnostic tests but are still gluten intolerant so diet is the best test.

I asked him if he was familiar with Enterolab and he said he was...but didn't comment any further. I was kind of hoping to hear his opinion on it.

it sounds like this Dr. is WONDERFUL! I totally agree with the statement about the ongoing stressors causing your immune system to not work properly and that certain things would set you off... I react very strongly to strong fragrances, I keep a paper mask in my office at work so if I get a client that has BATHED in their perfume or powder, I can cut down on the amt. I have to breathe. My boss doesn't like it that I do this, he thinks it's offensive to the patients, BUT I told him it's offensive to me that their fragrances make me so sick.

Wonderful! So glad you had a good experience and def. keep us posted! I don't know the answer to the "infections" question either, but I do know that it is common in people with gluten intolerance and celiac to have problems with Candida and parasites... as to what kind of infections he is talking about, I am curious how he would test for these and treat them... (Something I could go to my Dr. with and say DO THIS PLEASE!!!!)

Yeah...I can relate. I was doing fine at work but the last few weeks they've been keeping me in the checkstand (Safeway) for the last 3 hours of my shift. This is suppossed to change next week but my experience with having to deal with customer after customer with perfumes and colognes has been a nightmare. My tolerance is getting less and less and today it got so bad that I guess I fell off that "edge" the doctor was talking about and my symptoms flared. I had total brainfog in the middle of processing this women's order. I completely went blank and forgot how to run the ladies check through. I've been in this business for 16 years...its usually automatic for me. It was embarrasing and on top of that because I was in pain and my mood was affected I started to cry. All this in about 5 minutes time because of someone's perfume. It makes me angry that people wear these chemicals but before I got sick I wore perfume and never thought about it making people sick. Now I know...the hard way.

I believe he was talking about parasites mainly. He asked me if I had been tested for parasites and I told him I had through Kaiser. He said their test consists of only 1 stool sample and ONLY checks for Ghidardia (sp?) and is totally insufficient. He also said looking at one stool sample will give you 50% chance of finding the parasite...a second sample gives you 75%...and so on. He said usually 4 or 5 samples are needed to rule out parasites because they are often not immediately found. I did have tests done through Great Smokies as well but that came back normal also. I'm not exactly sure what they checked for though besides candida.
He also said that every human being is exposed to some sort of pathogen at least every 10 minutes but a healthy immune system takes care of these immediately. An unhealthy immune system and a damaged intestine means the body is not capable of fighting off all these "baddies"...and infections set in. I'm pretty sure thats what he said...I was trying to absorb it all. He was giving alot of info.

Oh...my Mom just suggested that I wear a mask at work (in the checkstand).
She said they would definately not want me checking out peoples groceries with a mask on. I dont know if I could actually do that though.
BUT...it *is* about my health and that is serious business as far as I'm concerned.

Hi Rachel--I'm just reading your posts now. That Dr. sounds fantastic! I wish I could find one like that here. I'm so excited for you--please keep us posted on everything. I don't know anything about the infection angle, but it wouldn't surprise me a bit to learn that there was more to it than gluten. I mean if a microscopic amount can trigger a reaction, maybe something else is at play. I think I'm jealous

Rachel, this is just me talking, but I would go ahead and wear the paper mask. If the bosses don't like it they can put you somewhere where it doesn't matter. After all, it is your health. Tell them that if you DON'T wear it that you will have to go home sick EVERY DAY or just call in sick because the fragrances are making you ill. My boss doesn't like it that I wear one, but crap, I have to breathe too. I don't want to get sick and go home and lose money.

heck, you could tell them that it's because of your compromised immune system and you can't afford to get exposed to even the common cold or worse, the flu.

Why do people think that dumping a bucket of perfume or cologne on themselves is a good thing? It just stinks and makes everyone gag. I would rather smell someones BO than perfume.

Exactly! When someone with bad BO walks by I cringe and I'm thinking EEEWW...but then I think to myself "At least its not making me sick like the last person who went by wearing a gallon of toxic chemicals." I'd rather smell someone's BO anyday!

LOL! One day my boss asked me "what about those patients that fart in the massage room?" Honestly, I'd rather smell their farts than someone elses toxic perfume or cologne!

Rachel, I just read all your entries and the replies. One thing I would like to mention to you. If you are still being put in situations where you are exposed to perfumes at work, and they make you sick, you can ask your physician to give you a note for your supervisor (keep a copy). The note should state what your allergen is and what needs to be done to keep you from having a reaction. The employer has an obligation through the ADA (American Disabilities Act) to accommodate you by placing you in a situation where you will not be exposed. This of course requires that you have the skills to move to another work area where there is no possibility of exposure and such an area has to exist with that employer. It is always best to work cooperatively with your employer in these situations by explaining the problem you are having and asking them not to put you in the areas where random exposure can occur. But if you have to pull out the ADA card, you have it.

Hi,

Thanks for your response. I actually only find I'm having a problem if I'm left in the checkstand and exposed to every customer wearing perfume and no way to leave the area. I actually havent been a checker for years but they were needing me to help out...I ended up talking to my boss about it and now I don't check at all so it worked out. My boss is new and so far he's been great to me. He goes out of his way to ask how I'm feeling or if theres anything he can do to make things easier for me. I'v been lucky in that I've had several bosses since I've gotten sick and they've all been very understanding even back when I called in sick more than I actually worked.

Now that I've started seeing my new doctor I'm hoping to get some relief from all these sensitivities. He's running alot of tests. I'll be seeing him once a week for the next 6 weeks. I'm keeping my fingers crossed. He says my immune system is burdened and he's looking for the cause of that to lighten the load so that my body can tolerate things better. He says there may be several issues but he's starting with H. Pylori and other bacteria/parasites. He said while I was on gluten my immune system was so overworked from constantly dealing with the gluten that other things start to occur. Things that normally the immune system would be able to handle all of a sudden become too much and I became vulnerable to infections and it just started a whole cascade of events.

What your Doctor said about your immune system makes sense. I'll be interested to know how you proceed with this as the weeks go on.

Rachel, this doctor sounds great. Please keep us informed on the tests he runs and the results. And for those of us who don't live anyplace near and can go to him, ask him if he knows or can recommend anyone in other states, or even if he'll suggest a list of the tests to be run that we can take to our doctors.
Debbie

Hi, I just read your message and I also think that it is wonderful that you have found a Dr. that doesn't think you are crazy!!! And can hopefully shead some light on the subject.

It's weird you said the parfume thing. That also happens to me!!! Also I always argue with my fiancee' about going out to the bar because the smoke maked me absoultely sick and when we get home late it takes a toll on me the next day!!!

Please keep us posted!

Rachel,
I've been following this on-going thread. We are so happy you found this Dr.
Agree, would be nice to know what tests he's reccommending. Can you share when you get a list?
My chiro dr who has a celiac disease/chrons 7 year old has been so helpfull to me...keeping me 'positive' when I feel I'm losing direction...
The blue quote (if it comes up) is exactly what she thinks is going on with me.
I'm 64 and it's been an un dx'd issue for at least 20 years...
So happy for you getting some answers and fighting so hard for your answers and being 24 years old (if i read your id correclty) is amazing to me coming from the old 'drs. are god' generation. I've come a long way baby...
Judy in PHilly

Rachel-I second what Judy said---I'd love a list of what tests he runs for you. I am doing just fine, but it would be helpful to know about it for the future.
I sure hope that this dr provides you with answers!

I just want to say that I'm very happy for you Rachel! You're always trying to help me out with my issues and now you've got someone to really help you get to the bottom of all of this and get really healthy!

I think it's amazing also that you have found a doctor that will listen to you, and actually be ON YOUR SIDE, instead of trying to be a "know it all" with a HUGE EGO. You know what I mean? When doctors KNOW you are right, but they can't admit that you, the sick patient, brought it up first, so they give you a snobby reply, laugh in your face and go against what you said, JUST BECAUSE THEY HAVE THEIR MEDICAL DEGREE AND THEY ARE 'BETTER THAN EVERYONE ELSE!' Am I right?

Okay, anyway, keep us informed, and I'M VERY VERY HAPPY FOR YOU!

Thanks everyone!

Well I had no idea what type of doctor this guy was before I saw him...just that he specialized in gluten sensitivity. Anyways, its actualy a clinic where whoevers involved in your treatment work together as a team. I wouldn't say its "alternative" treatment but its not "mainstream" either. I guess its somewhere in between. All I know is that mainstream doctors were TOTALLY clueless when it came to my symptoms. I mention fluid retention, chemical sensitivities, food intolerances, swelling and brainfog and they look at me like I'm speaking a foreign language. This guy knows exactly what I'm talking about before I even explain it all. He feels he has a good idea whats causing it but will wait for test results first. He says all these extra food intolerances people get are a result of the gut still being leaky and other issues causing stress on the immune system. If we take the stress away and heal the gut we shouldnt have so many intolerances.

I'm taking 5 different tests to start with. One was a bloodtest looking for autoimmune stuff having something to do with my muscles. Not exactly sure but will ask more questions about that later.

These are the other tests:
Functional Adrenal Stress (evaluates ability to adapt to environmental, mental, emotional and physiological stressors)

Metabolic Assessment
Assesses oxidative stress, liver detoxification, and digestive efficiency.

Test for H. Pylori

GI Pathogen stool test
looking for various bowel/tissue infections. Mainly parasites and bacteria overgrowth.

He said the Adrenal function test would be sort of a reference test for us. In about 3 months if I'm feeling much better we'll take it again to see if the test shows my body is responding positively.

These are all the tests for now. If we dont get answers from these I'll have to take more. He said they will definately find the cause of my problems. He said he has a patient right now who was gluten-free 6 years and even though she improved alot she still had alot of health problems so she went to see him and turned out she had some type of nasty bacterial infection and after 2 days on antibiotics she got dramatically better. I'm hoping its something easily fixed like that but will have to wait and see.

Will keep you guys posted.

Rachel--you must be SO excited! It looks like you found that dream doctor we all wish we had. Here's hoping the tests uncover something--it sounds to me like even if they don't, this guy is going to work with you until he figures it all out. How did you find out about him? I would love to find someone like that here in NJ. Is he a GI or Allergist, or other?

Rachel-- I am happy for your doc find too Sounds pretty 'cutting edge', to use a cliche! Do let us know the results etc. I'm curious about the adrenal function test. I have had slow progress...but much of what I've learned and people I've spoken with have caused me to think that I just need a considerable amount of time for healing. However, like you, I continue to read, research and see if there are other issues out there as well. Good luck !

If you think that people that spray themselves heavily with perfumes are bad – you ain’t heard nothing. I worked near a guy who is schizophrenic that sprayed himself, and/or his clothing, with RAID! Yes, the bug spray. I’m not making it up. He started out on the “soft” stuff, OFF, for campers, and progressed to the “hard” stuff. I complained to Human Resources, and they did nothing. I was considering contacting OSHA, Occupational Safety and Hazard Administration, but didn't.

Nobody would do anything - I guess they were afraid. I eventually “confronted” him myself, and he stopped. Traces of the odor remained for quite a while, though, because of his clothing.

I know that a lot of you are aware that I have a slightly “off-centered” sense of humor, and are questioning this, but it is for real. I was questioning my own sanity for a while, but other people agreed with me about what it was.

Does anybody else end up working with the “nut” cases at their jobs? This job-syndrome was written about by author Charles Bukowski - how the crazies always ended up in his work area(s). He once said that it was surprising to him that more people weren’t raving lunatics, due to the state of the world. I agree 100%, and it’s happening already.

I'm happy I found this doctor. I feel like if he can't help me....noone can. I really dont know what happened to wear down my system sooo much that I cant function normally. I'm so chemically sensitive and it came out of nowhere. My tolerance is very low and once I hit my limit it's pain, major brainfog, blurred vision etc. I'm having a very bad day today. I hope he figures something out soon cuz this is really wearing on me after 3 years. Two things happened the month before my symptoms started. I had dental work done by a dentist who put gold crowns on top teeth which were in direct contact with silver amalgam on bottom teeth. It was causing alot of stress in my mouth and electric-like shocks. My jaw was tense and I started grinding my teeth. I also went camping right before the dentist appt. and there were alot of deer coming around the campsite. This was in Sept. 02...by January 03 I was off work on disability, so everything came on pretty quickly. My Graves Disease also came out of remission at that time.

When I started researching stuff I read that 2 different metals should NEVER come into contact with each other in the mouth because this releases mercury rapidly. The other thing I wonder about is Lyme Disease but I really dont have too many symptoms associated with it. Its all scary to me. All I know is I was perfectly healthy and happy and all of a sudden I wasnt.

The doctor said they can test for heavy metal toxicity but he is prioritizing as far as the tests go. I wondered if one of these things could have triggered the gluten intolerance. His opinion is that gluten sensitivity would have been a problem for me my whole life even if I felt fine. He said the body can adapt to it. He compared it to smoking. The first time you try a cig. you cough, gag, get light-headed etc....but once you keep exposing yourself to cigarettes your body adapts and you dont feel the symptoms anymore but its still very harmful to your system. He said gluten is the same way but if additional stressors are put onto your immune system sometimes the body can no longer adapt and symptoms reveal themselves.

So...he said its likely I was exposed to some mercury during that time but a healthy body can handle something like that. If gluten was already causing stress to my system the mercury could have just been the final straw that sent me over the edge and then other things piled on top of that.

I feel impatient now...I just want to get on with my life. This is no fun and I'm scared alot of the time. Its a little less scary now that I have this guy helping me as oppossed to having doctors shrug their shoulders at me all the time but like I said, I'm impatient now. All of a sudden at the start of the new year it hit me that 3 years have passed and I'm not living my life the way I should be.

Jersey,
To answer your question I found him accidently. Someone from this forum recommended a Celiac Specialist from Stanford. They have a Celiac clinic there and this doctor heads the clinic, is involved in research and has celiac disease herself. I was excited to go see her and switched my insurance so that I could. In the end I couldn't get an appt. cuz she only sees people with biopsy proven Celiac. They were willing to schedule me with another doctor but I was disappointed. Later that night I was at health store looking at gluten-free stuff and my Mom picked up a flier for gluten resources and the Stanford Clinic was on there as well as 2 other doctors. I decided to call this guy and they scheduled me for a consult the next day. Maybe it was fate? Everything happens for a reason but I realize if I had gone to Stanford they probably wouldnt have helped me. My problems go beyond Celiac and if I could have dreamt up a place I'd like to go to and the type of doctor Id like to see it would this place and this doctor. So yes, I'm happy but not really excited. I guess I've had that excitement feeling everytime I went to see a new specialist in the last 3 years and I always got let down. Now I'm just tired I guess....I dont want to get my hopes up too much but maybe once the ball gets rolling so to speak I'll feel more excited. The tests take about 10 days to come back and I havent taken all of them yet. I think I'm just frusterated , impatient, having a bad day, and wanting answers right now.

The doctor is not an M.D....he's actually a chiroprachter and a nutritionalist....Does that make him a doctor or something else? Anyways, he specializes in digestive health and diet and things like that. There is also an M.D. there who I had an appt. with for a physical and we talked about all my health problems. She works with him and together they decided which tests to run and how to proceed. For the most part I will be seeing him from now on. This is a link to their website to get an idea of how they do things....maybe you can find something similar in your area? Maybe if you call them they can recommend something?

http://www.healthnowmedical.com/

P.S The man in the picture is the doctor I'm seeing and the blonde female doctor is the M.D working with him on my case.
I'm used to doctors not wanting to deal with me cuz I'm too complicated (I was a Kaiser patient until this month). Now that I saw that woman doctor....she actually said she likes "interesting" cases....THAT was something I'd never heard. Well, it should be interesting to see how everything plays out. He said I can return to the same healthy person I was 3 years ago so I pray that he's right.

Oh yeah...I got all the metals taken out of my mouth a couple years ago when I read all that stuff about different metals and mercury.



Wow! That is bizzare.

I'm glad I have noone crazy enough to do something like that at my work cuz I wouldnt be able to make it through the day.....EVER.

Rachel--I understand the feeling of not wanting to get excited after being disappointed time after time. I'll certainly keep my fingers crossed, though. Thanx for all the info. I checked out the link--and e-mailed asking if they have any recomendations for me in my area. It sounds exactly like what I'm looking for. I wouldn't be surprised if this type of practice becomes more widespread in the future. So many of us fall into a kind of medical "grey area". I suspect I have more going on than just the Celiac--I was ill for 20 years before I was finally Dx. The diet is helping, for sure, but I have lingering neuro. symptoms and I know there are other food intolorances. It would be so helpful to find someone to help unravel this thing.

Thanks Jersey,

Most days I'm not this down but its great to be able to express my frusteration here...everyone is always so supportive.

I hope they can recommend someone to you. They are very friendly there. Good luck! Let me know if you hear anything.

This past monday I had 4 large vials of blood taken at the celiac center of Columbia U, and I'm going back next week for the (bllood) results, an endoscope, a bone density test, and a consultation with their nutritionist.

Although I feel MUCH better now than I did before going gluten-free, I don't expect to see any drastic improvement in the numbers and scope results. I've never had a bone density test before.

Good luck, it sounds like you found a great Doctor.

Rachel, thanks for posting that link. I live in your area and am wanting to find someone who will work with me to try to find out WHY I feel badly, not just prescribe medications. I'm recovering from surgery right now, but I'm due for an annual exam in the next month or too, so may go to them instead of my regular MD. Thanks!

Dear Rachel,
I'm so glad we can add some support.
This sounds like a wonderful place and I hope you can get some answers.
I'm now wondering if this 'environmental' issue isn't something I've over looked.
1. 10 years ago forced to continue working in a air tight room after new carpets put down with that 'glue' that now has been outlawed...Eyes, chest, throat burned and horrid head ache
2. 7 years ago when I changed jobs and worked in a hosptial --everytime i got off an elevator on a floor with the new rugs...my throat would close and chest & eyes burned and would have to get back on elev.
3. the last year I worked there-- the path lab above me would put 'ziliane' (?) down the drain (OSHA ) vialation big time...Know it is a cancer carceogeon(?) ..anyway..would keep getting sore throats, buring chest and headaches..would call Safety office who would hang test strips etc. to detect...always a reason why the results were inconusive. Finally Dr.s using my office would compain and finally they sited the lab becasue the dr.s couldn't use my office to study for their exams...

So wonder now about this issue if it's all what cause the start of my immune issues..
lots of medical issues with me too....had a growth on my adrenal gland for years that they just say is 'normal for me'???????

I'll keep looking at your thread and PLEASE KNOW WE ARE ROOTING FOR YOU...and hoping you get answers and then can share with us too.

Thanks for the site..it's great
Judy in Philly

Rachel,
Thanks SO MUCH for the link. I'll check it out and see if I can find something similar locally. And I'm so glad you found someone to help you. I understand completely about not getting your hopes up - that's how I felt when starting the gluten-free diet. And even though it's only been a few months, I've already seen enough improvement to know that this is a major part of my problems. So now I'm starting to feel excited. But since I've had problems for so many years, I'm sure that gluten is no longer the sole problem, and I need to check out some other things if I want to completely heal.
Debbie

Hi Judy,

Thanks for all your kind words!
I'm actually not 24 though....I'm 34. I'm sooo glad all this didnt happen when I was 24 cuz I enjoyed 31 years of excellent health. Hopefully after all this gets figured out I'll have plenty more good years ahead. 24 is my favorite # so thats why I used it....I was in such a hurry back then to register (wanted badly to ask a question) I didn't put much thought into my user name so thats what I'm stuck with. Never thought I'd still be here 6 months later...just wanted to ask a quick question about Celiac. I guess you guys are stuck with me now.

Hi Rachel,
Even at 34, I'm impressed!
I was interested in the adrenal issue.
I put a post earlier on to one of your other posts re: new dr...adressing the adrenal testing since i have a tumor or something on mine since showed up on a scan in 1986
Did you see that one? Told of some of my other questions.
Also thanks for trying to help me figure out the 'orange boxes' in front of the word pinned.
Still don't understand it
Judy in Philly

Rachel, I checked out the link, and that place looks just awesome. A chiropractor studies just as long as an MD, and actually has more classes in diagnostics than an MD. And he is a doctor of Chiropractic. They also get more training in nutrition than medical doctors. Sounds like you're in good hands.

My chiropractor is awesome, too. I go to him with problems before I go to my MD, because he is so much more knowledgable than she is. He also has a homeopath in his office, who I consult with (as well as a massage therapist, but I haven't tried her yet, because I can't handle being touched for longer periods of time, due to autism).

Judy,
I actually know pretty much nothing about adrenals. I've researched alot of things the past 3 years but nothing having to do with adrenals since I was told by my endocrinologist that mine were fine. I dont know what that was based on because I dont recall having any tests done. At that time the main focus was on my thyroid gland which we (falsely) believed to be the cause of all my symptoms.
I will post the results of my adrenal test once I get them...probably close to 2 weeks from now. Maybe by then I'll have a better understanding.

As far as the orange boxes...you will see one indicating that there is an unread post in this topic (the one I'm writing right now). Once you read this post the orange box will go away until the next time there is something new written in this topic.

Hope that helps a little. I'm not the best at explaining technical stuff.



Thanks Ursula,
Thats very encouraging.
I was a little confused my first meeting with him when he told me he was a chiroprachter. I was like "How's this guy gonna help me with all my problems?". Once he started talking to me I knew better though.
I have to say since I've researched so many things, usually when I go to the doctor they say things that are totally "off the wall" and give info. that I know to be false so I basically lose faith immediately and get very dissapointed. That was not the case with this guy....completely the opposite...for the first time I feel like a patient! I'm looking forward to my weekly visits and finding out the results of my tests.

Rachel

Good news!!

Did this Dr. say anything about what he felt about York Labs?

Just curious.

Deb

Hey Rachel,

It must make a huge difference having a doctor who actually lives the life we do. He sounds like he's experienced the gluten-free diet and knows about some of the secondary illnesses that may occur. I think some of the best doctors are the ones who take a personal interest in an illness and have experienced its effects.

No he didn't mention any lab specifically. He just said he's sort of moving away from the food tests because they arent always accurate so he prefers an elimination diet. I took the IgG test back in April. It only showed low reactions to alot of spices and banana. Thats it. I react to almost everything though. He says this is a perfect example of why he doesnt like them.

I've been thinking about this and have a theory. He had mentioned that I am extremely chemically sensitive so we cant know for sure what it is I'm reacting to. It could be inhalents, pestcides on food...etc.
When I read about parasites (which he is sure I have) and their symptoms...they are identical to mine. They weaken the immune system and the result is increased allergies (especially to food) along with a bunch of other problems. It creates a toxic overload which then burdens the organs which also become overloaded. Eventually the toxic overload spills into the bloodstream causing symptoms. He said this is why when I get around perfumes it affects my brain and causes physical pain. This is how I feel...poisoned.

So....my theory is this. The food tests MAY be accurate...maybe I'm not so much intolerant to the foods I'm eating as much as the chemicals that may be in the foods. Maybe I react to everything I eat because my body is overloaded with toxins and cannot digest anything properly. So basically at this point anything could make me feel sick. This could explain why even though I was so ill my test showed no real problems to food and why also at certain times I can tolerate lots of food and other times I react to everything...even though my diet doesnt change.

Maybe if someone is just dealing with food sensitivities the tests will identify those sensitivities but if a person has underlying issues making them ill the results of the test may be confusing because they dont seem to correlate with what the person FEELS is making them ill.

Anyways thats just my theory. The results of my test could be dead on but I felt they were wrong because at that time I felt that food was the only cause of my symptoms.

I wonder if what I wrote even make sense? I just woke up.



Well I just got a receipt in the mail for the bloodtest I took.

It says it was for infections and autoimmunity.
IgG to Mysoin, Human Lupus and Athritis Peptides as well as 18 other infectious agents.
It lists all 18 infections...Most of them I dont recognize. The ones are recognize are Epstein-barr, H.Pylori, Herpes, Hepatitis, Chlamydia, Strep....and thats pretty much it. The rest are all long foreign words to me. They all seem scary to me though.

Hi Rachel,
I believe we have the same DR. Did you find the flier at Cupertino nutrition?

Well, I am going on my third visit with him and I am currently on the elimination diet which I find very hard, but its only for a month. I always had a feeling there was another food out there that bothered me and I think it is soy, but not sure yet. He told me soy protien can cause the same reaction as gluten in some people becasue of the similar molecular structure of the two proteins. I found that to be very interesting. Maybe that is why I could never feel 100% He aslo told me that it could take up to 3 weeks to recover from being glutened.

Let me know how your visits go and Ill keep you posted on mine.

Jessica

Hi Jessica,

I didnt see your post till today. Dont know how I missed it but yeah we must have the same doc.....how funny! The flier came from Cupertino Nutrition....LOVE that store! I've had 4 visits with him so far. I go on Mondays. I'm not on any elimination diet right now....still taking tests and other things. Soy bothers me too.... I just figured that out recently. Keep me posted on how things go with your visits.

Anyways,
I got some test results back yesterday and had a pretty interesting appt. The test was checking to see if my body was having any autoimmune issues and also it checked for IgG against like 18 different bacteria. I've already been checked extensively for lupus and other autoimmune disease so wasnt too worried about that coming back positive...and it didnt.

The thing about my test results was that he told me everything was in normal ranges (anything under 100 is normal for these tests) BUT I was actually lower than what is considered normal for most people. He said I'm a "low immune responder"....meaning my body is apparantly not putting out enough IgG to show positive for anything.

While most people have numbers higher than 50....mine were mostly in the 20's and 30's. I had one 0 which was for Lyme bacteria. I had been worried about possibly having Lyme since I got sick shortly after camping. Well I'm happy I can rule that out now.

He said the immune response may be lower right now due to a compromised immune system and the numbers may go higher if I were to get better. For now he said he just has to go by the numbers.
All the bacteria/viruses I'm familiar with like Herpes, Hepatitis, H.Plyori and a bunch of others were pretty much ruled out with this test cuz my numbers were very low. There were 6 bacteria that I scored in the 40's and 50's. He said this is considered high for me because all my other numbers were much lower. All of these bacteria have 1 thing in common...they are all oral infections.

Right before I got sick I had some dental work done and it caused me some problems. It was one of those things where I learned the hard way...."don't fix it if it aint broke". Never will I take a dentists advice again....I had just went in for a cleaning. The work was unnecessary and ended up causing me to have a root canal and even after that the tooth still hurt me and I ended up getting it pulled. Never had a problem before all that happened. I had the dental work done the same week I went camping and started having symptoms a few weeks later. In the back of my mind I always felt either something bad happened with the dental work or I somehow contracted Lyme. Also had alot of stress in my life during that time and quit smoking that same month.

The doctor feels that there are infections in my mouth and it likely happened when my symptoms came on 3 years ago. If there *is* an infection it was likely the trigger for my gluten intolerance as well. Now I'm really not liking dentists.
All of the typical Celiac type symptoms cleared up quickly after going gluten-free but the worst symptoms which include swelling, headaches, burning sensations, eye problems, chemical and food sensitivities....never went away. They were my original symptoms and I still have them. All of the pain is in my head, neck and mouth. My whole body used to hurt pre-gluten-free but now its only my head still.
I'm still waiting for results of other tests...parasites, adrenals, etc.

The doc feels an infection like this could have put a big strain on my immune system and then with gluten intolerance and stress added on top...he said the "load" is too big for my immune system and thats why I'm reacting to foods and chemicals.

He's sending me to a specialty dentist to investigate further and hopefully find whatever is causing all this pain. Hopefully I'll get an answer soon cuz I just wanna feel good and eat a normal gluten-free diet complete with McDonalds french fries and all the Kinnickinnick products I can fit in my freezer!

BTW...Something interesting I figured out. I never could understand why my ELISA IgG food sensitivity test was negative for EVERYTHING...even though I was reacting to alot of foods. I asked the doctor if being a "low immune responder" and not producing alot of IgG...could this be why I was negative for everything? He said its probably the reason.....soooo maybe the tests arent as unreliable as I thought. It also makes me wonder about my Celiac tests coming back negative. I wonder if I'm IgA deficient or if my immune system doesnt put out alot of IgA....similar to what happened with IgG testing.
Also my Enterolab results....although positive....were not very high...whereas the malabsorption score was extremely high (almost severe). It didnt seem to correspond with the numbers. I routinely see higher tTG numbers than mine but with no malabsorption/damage. That always confused me. Either something else is causing the malabsorption or I'm not putting out enough IgA Cuz I feel the numbers should correspond better.

How interesting--Why don't all doctors use these tests? Jeesh

Hi Rachel
I always felt there was a connection with my teeth too.
before hip replacement had 3 root canals done and changed dentists.
i am to have cleanings evey 3 months but haven't gone for 7 months as i have to take antibo. and they rip me up and didn't want to add this to gluten-free after finally getting some control of it.
where i'm having pain today there are no teeth...????? just whole side of my face hurts....
Let me know about adrenals tests, etc.
glad you found this great Dr.
Judy in Philly
typing is a mess please forgive have to get dinner...finally

I dunno.
The tests are fairly new. I think they've only been around about 10 years or so. Alot of the tests arent really diagnositc tests...they are considered "functional" tests. Basically they give the doctor a good idea as to where the problems likely are occurring and what things need further testing and so on. For example if the IgG for Lyme were to be high....I don't think it would conclude that I *have* Lyme Disease....but it would definately be a big "red flag" and would warrant further testing. He basically tested for stuff that could cause my symptoms and he's using that info. to narrow things down and ultimately pinpoint the real cause for these symptoms. Thats the goal cuz I've been sick for too long with no real answer as to why. Its obviously more than just celiac. The traditional doctors pretty much ruled out all disease and declared it to be "all in my head". Since nothing is indicating disease whatsoever (which is good)....its gotta be an infection of some kind.




From what I've read bad root canals can cause major infection and you may not even be aware its there.
It can basically poison the body. Thats how I've felt this whole time....poisoned.

wow Rachel,
it makes me wonder
Judy

Sorry Judy, didn't mean to freak you out. It was just something I rememeber reading...dont even know if its legit or not.
Whatever happened to me had already occured before my root canal.
I dunno, maybe it was something I did wrong. I remember that after they removed old fillings they put in temporary's. I forgot they were in and I chewed gum which caused one to pop out. I also didnt take all the antibiotics they gave me cuz I was forgetful and didnt like swallowing pills anyways. I also had the temporarys in for a longer than normal amount of time due to vacations, work and holidays. I guess going back to the dentist wasnt high on my list. I think something may have happened cuz thats when my symptoms started.

[quote name='Rachel--24' date='Jan 25 2006, 06:53 AM' post='95412']
Sorry Judy, didn't mean to freak you out. It was just something I rememeber reading[quote]

Rachel,
you didn't but it sure got me to thinking.
you have to have the dentist ck off your free of any dental infections for hip replacement.
I had teeth cleaned and said i was fine...then went back 2 times and said something wasn't right.
they said 'all in my head' well YEA, my teeth are in my head..dagh....
Changed dentists and new gal found a absess...what a mess that would have been for the hip.
NOW---new dentist and on here---heard your mouth is a main place for infections to transfer into the blood so questions to ask dentist?
I've read here that there are issues re: what gluten-free products they use etc.
Know there is a thread somewhere...do you remember anything about it???
becasue of you calling my dentist today to see that they are prepared for this issue and when they are to call me and i'll schedule an apt. have a cool lady dentist so we'll see.
face and jaw still hurt. thanks for making me get on this.
judy

Judy,
In that case...glad I could help. Hope all goes well for you.

I got scheduled to see the dentist one month from now. That is WAY too long for me to wait. I've been sick 3 years! I'm throwing a fit....trying to get in sooner. If all of my problems are originating from an infection in my mouth then all I have to say is wow! A mouth infection can cause some serious damage to the body!

I had alot of problems with one of the new crowns they had put in and ended up getting the root canal and still hurt to even touch the tooth with my tongue. They couldnt understand why it hurt cuz they had done the root canal "perfectly". About 4 dentists later a holisic dentist I saw told me something was clearly wrong with the tooth and there MAY be infection involved. He recommended getting the tooth removed. I did and obviously it doesnt hurt anymore...since its gone now. The rest of the problems are still there. My head has been hurting for 3 years.

Rachel
Went to the new dr thread..where the c diff ??
Did you post it somewhere else or didn't you post.
don't take time just when ever you feel up to it.
just didn't want u to spend time retyping if it's somewhere.
judy