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Rachel--24

New Doctor...

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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! :D

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. :(

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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.

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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.

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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

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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. <_<

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Guest nini

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!!!!)

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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.

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. :(

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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!!!!)

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). :blink:

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. :ph34r:

BUT...it *is* about my health and that is serious business as far as I'm concerned. ;)

Edited by Rachel--24

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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 :(

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Guest nini

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.

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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.

Edited by ianm

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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.

:lol:

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::lol:

Edited by Rachel--24

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Guest nini

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!

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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.

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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.

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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.

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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

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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!

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Hi,

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.

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... :lol:

Judy in PHilly

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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!

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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! :rolleyes:

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!' :lol: Am I right?

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

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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. :)

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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?

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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 !

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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.

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