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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?  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

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Hi, my daughter has a one month follow up check-up scheduled next week, and I know this sounds bad, but I am wondering just what they are looking for. We have insurance, but still are left with a big chunk, so I am trying to determine if it is really necessary, or if we can just do a 6 month check up (where I am assuming they will do blood-work to see if she is really gluten-free) The dr already told me that they won't be doing any blood work at the 1 month, and she is gaining weight VERY well, so I don't really want to take her if he will just look her over, notice how much she has gained and how healthy she seems now and say, "see you in 5 more months!" She is still having diarrhea some (sometimes once a day, sometimes none, occasionally more than once), but I have been speaking with the nurse and she said it is probably just taking her awhile to heal. We are continually looking for hidden gluten, and we still have her off dairy so she had no more suggestions. Anyway, we are on a very limited budget, and we are trying to pay off all the medical bills we accrued to this doctor, and the hospital in testing, so I want to do what is best for her, but don't see the point in acruing more bills if it is not necessary. Any advice? Anyone had a 1-month follow-up, if not, how soon did you have a follow-up? Thanks so much

Michelle

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Guest Evelyn's mom

Michelle,

I know exactly how you feel, our insurance changed in the midst of Evelyn being diagnosed and considered this a pre-existing condition and denied all of our claims including the endoscopy (very expensive!). The only thing that made it pre-existing was our doctor stating in her chart that she had "failure to thrive". Our doctor never suggested any follow up vists, as a matter of fact, when I called him and asked if he'd write to our ins. company to tell them that nothing had been "existing" he said he would but didn't. So I never took her back, and at the risk of being admonished, I have to admit, she still hasn't been back to the doctor (almost two years now). We're getting new ins. as of May 1 and are committed to shop for a decent doc and we're also saving up to do the Enterolab (Dr. Fine) test. I know we need to test her to see if there is any hidden gluten in her diet but after the whole ordeal, we really lost faith in the physicians. Although I can't say for sure that you should take your daughter in for the one month (I probably wouldn't being on a tight budget), it is encouraging that your doctor is interested in her recovery. I could be wrong but I did ask the University of Chicago Celiac Research staff how often she should be tested and they did say 6 months and then once a year after that.

Just curious, is your ins an HMO? If it is, your doctor gets paid by them whether you go in or not so in that case, money is not his motive, he's just being concerned (good doctor!). You might want to call him and explain your situation and ask if it is imperative.

How old is your daughter? I'm always curious to know how other's got their diagnosis and what the symptoms were. If you've already posted that somewhere let me know.

God Bless,

RaeAnn

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Guest gillian502

I don't know if it's different for children, but as an adult, a Celiac blood panel is done generally every 3 months, for the first year. Then maybe only once or twice a year after that if there are no problems. If you don't see the need to take her in at one month, I would definitley suggest taking her in at 3 months gluten-free, to request blood work to check on her progress. The fact that she is still having diarrhea sometimes every day is a little concerning, however, so you may want to just go ahead and take her now.

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Thanks for the imput. I decided to put it off a few weeks to see what is going on with the diarrhea, it seems to stop, and then starts back again. I really didn't want him to say to wait a few weeks and come back again! I am thinking up some more questions for him too, so we will get our money's worth out of the visit! I figure after waiting so long for a doctor to take us seriously, I better take him seriously too! Oh, RaeAnn, my daughter is 4-1/2, how old is your's?

Michelle

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