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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Personal Labs Testing? Any Experience?
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Looks like they use LabCorp, the same company that runs the blood work done by my doctor. (so, that part is probably legit)

 

Looks like they are not allowed in certain states (check the website)

 

Not sure what tests you are going to have run and why you may not want to go through a doc to order them (and that is none of my business :D )

but your insurance would cover them if you did it that way.

 

If you do not have insurance or you have not been helped by a doctor, maybe it is a good idea, but I would check to see if any complaints have been lodged about this company before sending them my credit card info.

 

You may still need a doc after you get the results.

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I plan on using my doctor if he will order them and doing it myself if he will not. My specialist has told me point blank that I do not need to order such tests and that I should stop being silly. I thought that was irresponsible and I found a new specialist. I just can't see him until August. I have a disease which impacts absorption and causes potential malnutrition. I need to figure out if I am deficient in any vitamins and where I stand on other issues. The food allergy test would also be a plus (if that works). I have heard good and bad things. 

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Jesse,

 

I can't speak for the lab, but I understand your frustration.  My GI just said to take 2 iron pills and two calcium pills a day.  Told me that typically his patients don't benefit from a dietitian (that's okay for me because my husband's been gluten-free for 12 years, but others?).  

 

Followed up with my PCP after being in the hospital (focus was on a heart attack which I didn't have and nuclear stress test proved it).  Armed with the "Up-To-Date Management blog by Jebbie (pediatrician with celiac disease) in June 2013 in hand, I started the visit with "f/u from hospital but look at this article I found on Celiac.com.  Doc said that he uses the website where this information came from (so legit article).  I asked about screenings for deficiencies.  Told me to go back to my GI or take a multi-vitamin.  Then reviewed the hospital one X-ray -- "humm....broken vertebrae, I guess I should order a bone scan."  The worst yet:  "Some DC patients have bloody diarrhea, but yours isn't so bad you could probably eat a little."

 

Okay.  He's probably limited on procedures (HMO) and he sees a ton of patients who might not have celiac disease and doesn't have time to research everything, but really? (My old PDP/GP of over twenty years retired in December, and geez, he'd give you a PAP to save you time....)

 

Back to the blood test, I took them almost years ago ordered by a MD (Environmental Medicine) who thought outside the "box", lived in the University Medical Library, and a grad of MIT but now retired too.  

He said although they are not 100% accurate, it is at least, a place to start.  Did skin testing too.

 

I found my major food and inhalant allergies (pollen, mold, eggs, casein, whey, almonds, mushrooms and garlic.  Other were less, but I rotated them.  Can eat some tree nuts (walnuts), but not almonds....weird.

 

I still have those allergies, but I'm three months into the celiac disease diet.  It would be a miracle if I could get those foods back, but I'm hoping.  In the meantime, as long as I avoid those foods and the gluten, I'm feeling much better.  Just trying to get through the deficiencies (e.g. iron anemia, whacked thyroid).  Bone scan in August (I'm going on vacation) and then I'll know if I should be safely back on a bike again).  For now, it's swimming and walking!  

 

Go for the testing yourself, unless you can find a savy doc!

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I finally found a new doc who has agreed to do vitamin deficiency testing and a food allergy panel. I hope this at least helps a little bit because it has been a miserable last few months. I have been gluten-free for 3 months now. The first week was great but now the symptoms just keep cycling through. The most troubling aspect has been my pulse and heartbeat this week. I had to go do the stress test just like you, CyclingLady and it came back clean *thank goodness* but I still get tender and my pulse shoots up to 100 while I am lying in bed at night. I think this is what is waking me up. I generally wake up around 1 to 3 every night and have a rough time falling back asleep. This makes me tired all the next day and just seems like an endless cycle.

 

I don't do well with uncertainty. Thankfully I have this community and maybe a new doc now. I would be lost without help. Just being gluten free does not cut it.

 

Thanks!

Jesse

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I finally found a new doc who has agreed to do vitamin deficiency testing and a food allergy panel. I hope this at least helps a little bit because it has been a miserable last few months. I have been gluten-free for 3 months now. The first week was great but now the symptoms just keep cycling through. The most troubling aspect has been my pulse and heartbeat this week. I had to go do the stress test just like you, CyclingLady and it came back clean *thank goodness* but I still get tender and my pulse shoots up to 100 while I am lying in bed at night. I think this is what is waking me up. I generally wake up around 1 to 3 every night and have a rough time falling back asleep. This makes me tired all the next day and just seems like an endless cycle.

 

I don't do well with uncertainty. Thankfully I have this community and maybe a new doc now. I would be lost without help. Just being gluten free does not cut it.

 

Thanks!

Jesse

that early awake ; could be blood sugar related.

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