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Need A Dr. Referral In Long Beach, Ca Area?

i think i have sibo/dysbiosis

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#1 FruitEnthusiast

 
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Posted 10 March 2014 - 11:55 AM

I need to find some kind of medical professional hopefully near the Long Beach CA area who can help me get well. Gluten intolerant and gluten free two years. My diet is just as it needs to be. I've identified and cut out all the problem foods. I also have severe constipation issues along with it. Keep thinking I'm better, then I'm not. Any ideas about how to find any kind of medical professional who could help. Even if they are in another part of the country, it could still be a start. Or, any recommended books, websites. I need to have a better understanding about what is going on inside my body so I can treat the problem.

 

My ND and Gastroenterologst don't know what to do. I think SIBO is the problem. I take two high quality refigerated probiotics from a health food store. I can't tolerate the usual anibiotics used for that or the peppermint caps from my ND. My ND wants me to have a $400 DNA stool test that has to be sent to a company in another state. Need a doctor or other med professional who specializes in gluten/Celiac and related digestive issues.

 

I'm so exhausted I can barely take care of myself. Colonics have helped but not enough. Haven't worked in a year, staying with family. My mom wants to have me admitted into the hospital, but I'm afraid they could make it worse or just make me more miserable trying things when they don't really know what to do. I don't want to be a ginnea pig. I need someone who knows how to actually help me.

 

It's been a long time since I've posted on here. Had great support in the past. Please help if you can.


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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


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#2 cyclinglady

 
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Posted 10 March 2014 - 03:46 PM

What about UCLA? They have a digestive issues center and they treat celiac disease. UC San Diego also has a celiac disease center.
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#3 IrishHeart

 
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Posted 10 March 2014 - 05:23 PM

I had "in Long Beach CA" added to your thread title so you could get more replies and I had a feeling cycling lady or GottaSki lisa

would pipe in (or both) LOL

 

Please stop doing colonics. Repeated irrigation of your intestines is unnatural and not necessarily a good idea. 

 

Chronic constipation can be caused by hypothyroidism, not enough water, not enough fiber or any other number of things,

You need to find out what may be going on. NDs cannot perform the necessary testing a Medical doctor can.

 

SIBO can be diagnosed by a GI doctor. If you have one, why hasn't s/he run this test?


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 GottaSki

 
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Posted 10 March 2014 - 05:39 PM

Welcome Back FruitE :)

 

I can highly recommend Dr. Gregory Harmon, Director of the UCLA Celiac Center.  

 

The problem with the SIBO test is it is not very accurate...catches something like 60% of cases...so worth doing, but not conclusive.

 

I have yet to find a medical doctor that is excellent with the amount of intolerances I developed after celiac diagnosis...all that said, I still highly recommend Dr. Harmon for you to speak with an excellent Celiac Doctor as a starting point.

 

What is your list of problem foods?  Perhaps we can suggest other possible issues besides SIBO to investigate.

 

Hang in there!


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 FruitEnthusiast

 
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Posted 11 March 2014 - 10:18 PM

Thank you everyone so much for your responses. I'm glad to be part of this site again talking with others who understand.

I'm not sure I know how to respond to individual comments, so I'll just comment on all the responses I recieved in this post:

 

I suffer from slow transit constipation which only makes this healing process take longer. I had developed an impaction that my GI has now resolved. I won't be needing colonics anymore. He tried giving me antibiotics for the SIBO, but I couldn't tolerate the severe side effects, and I'm allergic to 1/2 half the classes of antibiotics already. I'm very sensitive redhead. 

 

So, I'm taking the natural route to resolve the SIBO with the help of my ND. From all the reading I've been doing, it sounds like I'm on the right track. No sugar, ginger caps, dark leafy greens, garlic, etc. I'm taking glutamine powder for my leaky gut.

 

I will call UCLA and make an appt to see a Dr. there, hopefully Dr. Gregory Harmon. It's taking a team of people to help me get over this. I'm exited to get this info about the digestive celiac center there.

 

As soon as I my digestive system is working normally again I will carefully try adding new foods back in one at a time, with my fingers crossed. My foods have been very, very limited for the last two years. I had to eliminate food after food along the way. I don't dare stray from my strict diet as the consequences are severe. It's a very sloooooow process. I know many of you can understand from reading your posts.

 

I look forward to having a life again, going out, having a job, the usual things I used to take for granted. I already feel so much better than I did a month ago. I'm lucky that I enjoy my own company at home, have endless creative projects to do, and that I have family to stay with.Talking with people on this site is priceless though - I feel so much less alone being back on here.

 

Thanks again all. I'll be posting on my progress... and I wish everyone all the best with your own ongoing struggles.


  • 0

Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#6 GottaSki

 
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Posted 12 March 2014 - 08:31 AM

Good Morning Sara!

 

I hope you are able to get in to see Dr. Harmon, he diagnosed me while practicing at UCSDs Celiac Center.  He takes the time to listen -- which is a quality lacking in many doctors today. 

 

I am curious if you were tested for SIBO...Although negative results are not always accurate...positive is and can help to know that this is an issue for you.

 

I'm not clear on your symptoms.  I continually lost foods after removing gluten so I thought you should take a look at this thread for mast cell activation.  Your symptoms may not match up...but doctors are not looking for this so I thought you should at least be aware of it...just in case you are having any histamine related issues:

 

http://www.celiac.co...-syndrome-mcas/

 

Keep looking for answers :)


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 FruitEnthusiast

 
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Posted 12 March 2014 - 02:48 PM

Thanks Lisa... no the symptoms listed for mcas do not sound like they apply to me.

 

I am gluten intolerant but I don't think I'm Celiac. I never found out for sure because my GI started me on a gluten free diet before I could get tested, but I don't seem to have any additional problems that Celiacs tend to get from my readings. I haven't been tested for SIBO, but have the tell tale digestive signs when, shall I say, I'm in the bathroom.

 

This is my second go around with getting well. I was just getting there when I mistakenly got into the wrong relationship that turned my recovery upside down - diet changes, lots of stress, not enough rest or time for myself etc. So I know that what I am doing now worked before. I am trying to step up my progress with more supplements geared toward SIBO.

 

My other issues are very slow colon motility from it being shut down for so long due to such extreme constipation, and Leaky Gut.

 

My gluten related symptoms have improved a lot. The brain fog is much better. I can think much more clearly than I have in two years when I went gluten free. I still get some mild blurry vision, achy joints, and fatigue when toxins are stirred up the most.

 

My diet is entirely whole foods I prepare at home and is restricted to fruit, veg, water, and for protein I eat almonds, sunflower seeds, chicken and fish. In the beginning I couldn't tolerate grains at all, or nightshades, or anything else I didn't list in the list of foods I can eat above. I don't dare try adding any foods yet.

 

I'm working on the Dr. appt at UCLA. I imagine it will take awhile to get in to see Dr. Harmon, if he is the director, so I'll have to see if it's worth it to wait for him or see one of his colleagues. I hope they will see someone like me who is Gluten Intolerant but most likely not Celiac.


  • 0

Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#8 GottaSki

 
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Posted 12 March 2014 - 02:58 PM

Oh good...glad you don't think your symptoms are mast cell related.  

 

You are in a bit of a pickle....I would hate for Dr. Harmon to be a wasted effort as he does specialize in Celiac Disease and you are well beyond wanting celiac testing as you already live completely gluten-free...perhaps there is a gastro that has more experience with SIBO...or maybe you should ask your primary to order a SIBO test for you?

 

I still think Dr. Harmon is an excellent choice if you want to establish care with a gastro that has extensive celiac knowledge.

 

Hang in there!


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 FruitEnthusiast

 
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Posted 12 March 2014 - 04:29 PM

I can call UCLA and ask about what they do there to see if they can help me, but after all the reading I've been doing the past few days and what you say about Dr. Harmon, I think I already know what I need to do to get well and patience is all I need at this point. Thanks again.


  • 0

Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#10 CaliSparrow

 
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Posted 19 March 2014 - 06:10 PM

I had an appointment to see Dr. Harmon and couldn't stomach the gluten challenge :( (nor could my husband handle watching me falling down the rabbit hole and he was very vocal about it). Dr. Harmon is supposed to be excellent!

I ended up going the Functional Medicine route. My doctor is in Orange County (Mission Viejo). She has helped me identify multiple food intolerances and has me drinking a special shake and following a diet that is helping. She is helping me repair leaky gut along with some other things. She's gluten intolerant and the other doctor in the practice has Celiac.

You can learn more about their approach at http://www.functionalmedicine.org. They also offer a list of doctors.

Good luck in your search!
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#11 GFinDC

 
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Posted 20 March 2014 - 10:00 AM

Hi FE,

 

A couple other things that can cause slow digestion are diabetes and thyroid problems.  It would be good to have some testing to eliminate those as a possible cause.


  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 FruitEnthusiast

 
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Posted 25 March 2014 - 08:54 PM

I had an appointment to see Dr. Harmon and couldn't stomach the gluten challenge :( (nor could my husband handle watching me falling down the rabbit hole and he was very vocal about it). Dr. Harmon is supposed to be excellent!

I ended up going the Functional Medicine route. My doctor is in Orange County (Mission Viejo). She has helped me identify multiple food intolerances and has me drinking a special shake and following a diet that is helping. She is helping me repair leaky gut along with some other things. She's gluten intolerant and the other doctor in the practice has Celiac.

You can learn more about their approach at http://www.functionalmedicine.org. They also offer a list of doctors.

Good luck in your search!

 

Thanks CS!

 

I missed your post somehow, just saw it today. No way would I attempt the so called "Gluten Challenge" if it is the eat gluten again until you're sick as a dog, then get tested for Celiac. If so, I think any Dr is nuts to put someone through that just for a diagnosis. Makes me wonder what they're up to, but I have to admit the term guinea pig comes to mind. Glad to hear you're improving. Thanks again for the info.


  • 0

Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#13 CaliSparrow

 
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Posted 25 March 2014 - 09:04 PM

Thanks again for the info.


Sure thing :)
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#14 GottaSki

 
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Posted 25 March 2014 - 09:08 PM

I absolutely have to chime in on this.  I respect everyone's decision with regard to the celiac diagnostic process - and firmly believe -- that unless a diagnosis is derailed by circumstance -- it is a very good thing to pursue.

 

While I fully understand every frustration that comes along with the gluten challenge...I can't help but post this:

 

We, as a celiac community, need more doctors like Dr. Gregory Harmon that are committed to both the research of Celiac Disease and caring for his patients.

 

Again...I am not upset with any post in this thread...just want to be clear with regard to the reputation of this particular doctor.


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 IrishHeart

 
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Posted 26 March 2014 - 04:15 AM

And I have to say that reputable doctors do not put people through a gluten challenge just to be cruel or to make them "guinea pigs".

 

They do it to ensure that Celiac Disease is, in fact, the underlying problem and not some other GI tract disease like EE, Crohn's, ulcerative colitis, etc. Celiac is not the only reason someone might have these issues. 

 

If you don't want to endure a gluten challenge for a diagnosis, that's totally understandable.  I doubt I would do it either!

 

Yet, I think  it is unfair to categorize the gluten challenge protocol as something that is done "just because" and for the entertainment of doctors.

 

They actually do not like putting anyone through it, according to my GI doctor ---and some of them will actually diagnose based on the severity

of symptoms during the challenge rather than make their patients continue to feel lousy during it.

 

Just my two cents, offered IMO. 


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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