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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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

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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.

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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.com/gluten-free/topic/105835-mast-cell-activation-syndrome-mcas/

 

Keep looking for answers :)

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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.

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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!

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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.

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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!

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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.

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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.

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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.

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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. 

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Celiac researchers  hate that, for whatever reason,  people decide to go gluten free before testing.  Because, currently there is no way to test for Celiac in a gluten free person.  Good Doctor's aren't supposed to "guess" and give you a diagnosis.  They are working on a couple of different tests for Celiac that involve a smaller gluten challenge (3 days) or no gluten challenge.  They do not just decide to hurt you for fun or profit as some seem to be implying here.

 

I heard some of them say that Celiac is about the only serious disease that people & alternative health practitioners think its OK to self-diagnose.  They used the example of Type 1 diabetes - you wouldn't just start giving yourself insulin without a diagnosis.

 

I understand that a gluten challenge may not be right for you,  but don't bash the doctors who only have that means to get a definitive diagnosis of Celiac.  You chose to self-diagnose, for whatever reason, and that will have to be the diagnosis you live with for now.  Perhaps, in  a few years, the new testing methods will be viable and you can decide if that is right for you.

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To be fair to Dr. Harmon, I never met him. It was a nutritionist who works with him that told me what was required. If I hadn't have been so sick, I would have kept the appointment but because of the malpractice that I I incured over the years by other doctors, (this is truth), my husband did not want me to hurt myself in order to get a diagnosis for something he could see quite clearly was hurting me. Not to mention, we were told about the human error in the testing process and Dr. Harmon was recommended as a doctor who knows how to decrease the potential for human error on his end. It wasn't Dr. Harmon who did harm but a whole lot of other doctors before him without which, I wouldn't have gotten as sick as I did and have so far to go to recover.

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Just to clarify, I’m not a fan of the “gluten challenge” after reading about the suffering it has caused others, but I haven’t been through it personally. I don’t believe the potential damage it can do makes it good way to seek a diagnosis. That’s just my opinion.

 

Any comments I made were not in reference to any specific doctor. I’ve heard only positive things about Dr. Harmon and the UCLA Celiac Center. I have no experience with the center or anyone who works there.

 

My use of the term “guinea pig” was meant to be a playful way to describe what it can sometimes “feel like to be a patient” enduring tests to get to the root of a problem. I think good, caring doctors take their jobs seriously and try their best to make us as comfortable as they can. It never occurred to me that doctors might be cruel enough to cause a patient discomfort for their own entertainment, and I agree to suggest that is unfair.

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