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La Celiac Specialist?


HippyGirl84

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HippyGirl84 Rookie

Hi, I have been living in California for about a yr and a half during which I uncovered the devastatingly long and frustrating truth that i had been suffering from Celiac disease. Being 23, and working to just get by in a big city, I didn't have health ins so i paid out of pocket for the blood work....now I have some insurance and want to see a specialist (b/c after a yr of being strictly gluten free i am still having issues)....

so my questions are:

1. Does anyone know of a GOOD Celiac/Gastro Dr. in the L.A./San Fernando Valley area?

2. Can I see a specialist without my insurance co finding out? (b/c they will drop me if they find i have Celiac...it took me a yr to get THIS ins i have now b/c no one would take me that knew of the bloodwork i had done for celiac!)

3. Has anyone else had severe problems like shaking (sometimes as intense as mini seizures), persisting daily nausea, malnutrition (despite the B12 shots i get every 10 days), teeth enamel loss and incredible fatigue even after a YEAR of strictly monitoring their food intake and being as gluten free as humanly possible?

I appreciate the help! thanks in advance!

HippyGirl84

  • 2 weeks later...

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VioletBlue Contributor

I can't help you with personal experience. I had to push for a blood test and even then the doctors I saw weren't very helpful. I live in the Inland Empire area and have no doctors to recommend out here.

But here are a couple places to start. And if you can get into see an Internist or Gastroenterologist at UCLA I have been very impressed with the doctors there in the past.

https://www.celiac.com/articles/277/1/Unite...tors/Page1.html

Also, you might try emailing or calling someone at the Celiac Disease Foundation, Celiac dot org. They are located in Los Angeles, in the Valley I believe. They would probably be able to suggest a couple doctors.

quote name='HippyGirl84' date='Aug 27 2008, 08:17 PM' post='461092']

Hi, I have been living in California for about a yr and a half during which I uncovered the devastatingly long and frustrating truth that i had been suffering from Celiac disease. Being 23, and working to just get by in a big city, I didn't have health ins so i paid out of pocket for the blood work....now I have some insurance and want to see a specialist (b/c after a yr of being strictly gluten free i am still having issues)....

so my questions are:

1. Does anyone know of a GOOD Celiac/Gastro Dr. in the L.A./San Fernando Valley area?

2. Can I see a specialist without my insurance co finding out? (b/c they will drop me if they find i have Celiac...it took me a yr to get THIS ins i have now b/c no one would take me that knew of the bloodwork i had done for celiac!)

3. Has anyone else had severe problems like shaking (sometimes as intense as mini seizures), persisting daily nausea, malnutrition (despite the B12 shots i get every 10 days), teeth enamel loss and incredible fatigue even after a YEAR of strictly monitoring their food intake and being as gluten free as humanly possible?

I appreciate the help! thanks in advance!

HippyGirl84

  • 2 weeks later...
nasalady Contributor
Hi, I have been living in California for about a yr and a half during which I uncovered the devastatingly long and frustrating truth that i had been suffering from Celiac disease. Being 23, and working to just get by in a big city, I didn't have health ins so i paid out of pocket for the blood work....now I have some insurance and want to see a specialist (b/c after a yr of being strictly gluten free i am still having issues)....

so my questions are:

1. Does anyone know of a GOOD Celiac/Gastro Dr. in the L.A./San Fernando Valley area?

He's not exactly in the LA/SF Valley area, and I've only seen him once so far, but I'm VERY impressed with Dr. Peter Rosenberg in Pasadena. He is a gastro who immediately ordered the full celiac bloodwork panel with DNA typing from Prometheus for me, just because I told him (1) about doing a gluten-free diet for a short time then going back on gluten and having my mouth break out with sores, and (2) that my 4 year old granddaughter has been diagnosed with celiac disease via biopsy. I'm still waiting for the results.

Good luck!

JoAnn

Nancym Enthusiast

Why would your insurance company drop you? I don't think they can, unless they can prove you lied on your application. A whole bunch of companies got into trouble recently over claiming people lied on their apps that really didn't, so they'll probably err on the side of the consumer for awhile.

  • 1 month later...
TimothyRyan Rookie

hey hippiegirl,

i know its november, and maybe you've found a doc, but i am in LA, and also a celiac, so i thought i'd give you my reccomendation.

I see Dr. Wilfred Weinstein at UCLA. who is quite amazing. but also really, really hard to get into see for an appointment. (but thats cuz he's so busy, and good docs are busy docs)

you'll end up waiting a month or 2 for an appointment, most likely. but also, if you call his office, they will recommend another doc that studied under Dr. Weinstein who also has clinical interest in Celiac.

I hope this helps. I have been celiac/gluten free for 6 years, and recently started experiencing problems again this whole past year. Blood tests showed no GLUTEN, so im good on my diet. trying to figure out what has changed! its so frusterating.

Tim

Lindaa Newbie

Im also 23 and a new Celiac. I live in the Orange County area of CA and have been having some trouble finding a good MD myself. Everyone Ive met so far seems very apathetic to celiac disease. I hope you have already found a good specialist in LA since its now november & you posted this awhile back. Good Luck with your insurance company as well, hippiegirl.

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  • Posts

    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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