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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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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