• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

1 Month Check-up
0

4 posts in this topic

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

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,339
    • Total Posts
      935,565
  • Member Statistics

    • Total Members
      64,999
    • Most Online
      3,093

    Newest Member
    Con Smith
    Joined
  • Popular Now

  • Topics

  • Posts

    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
    • Why yes it is! jmg and myself are NCIS, I mean NCGS specialist/experts or is it NCGI people ourselves. posterboy,
  • Upcoming Events