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Looking For Celiac Specialist In Los Angeles/after 1 Yr Of Gluten Free I'm Still Sick


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


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    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
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      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
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      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
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      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms.  My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having? Cristiana  
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