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Going to See a Dietitian After My Celiac Disease Diagnosis

As soon as the diagnosis of celiac disease came, the doctor told us he would refer us to a really good dietitian.  We were very excited to get in front of her because we had so many questions.  As with anything else, the more information you get the more you need so you can filter through it all.  I found out that the insurance would not cover it.  The plan only covered a dietitian for a diagnosis of

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to cells.'); return false">diabetes.  I could have waited until letters were sent and pre-authorization was in place but we were anxious to see what we needed to do.  So off we went only to find out that not only did this person not specialize in celiac disease, she told me that I knew more that she did.  She was a weight loss specialist.  The bill came in the mail the other day for $500.00.  I was shocked.  So here is a bit of advise.  If you doctor advises you to see a dietitian, check with your insurance company for coverage and make darn sure they specialize in the disease or you will be wasting your money.

Have a great day!

As always, Celiac.com welcomes your comments (see below).


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16 Responses:

 
said this on
01 Jul 2009 12:36:45 PM PDT
Hi Nancy, I know exactly what you are feeling. I had the same experience. The dietitian I went to told me the same thing and she was right. I did know more about celiac disease that she did. Thankfully my bill was not nearly $500.00

 
said this on
05 Jul 2009 4:11:35 PM PDT
I am sorry to say that your experience is sometimes the case. It is wise to ask the dietitian beforehand if she has experience with Celiac Disease. Since the NIH Consensus Conf of 2004 and the work of the Nat. Found. for Celiac Awareness, there is a definite increase in awareness and knowledge about Celiac Disease. That is not to say that there is not much more work to be done.
Lynn Cicero, M.S., R.D.

 
Rocky

said this on
12 Jul 2009 8:05:05 AM PDT
Kaiser charged me the normal co-pay of $20 to see a staff dietitian. She did recommend one useful reference book 'Gluten Free Diet' by Shelley Case. If you can't find it at your local bookstore, you can order it at this site.

 
said this on
20 Jul 2009 5:35:00 PM PDT
Dear Nancy, If a licensed health care provider has been personally diagnosed with celiac disease or has a gluten intolerance and has experienced the gluten-free diet, they are in a much better position to work with you. After being on a gluten-free diet for several months, the knowledge learned is much more than what one can read in a book! Also, dietitians are working hard politically to help people like you get insurance coverage for conditions other than diabetes and renal disease. For those who cannot afford private pay, I have a sliding scale and even donate my time. It is important to seek out reputable resources and avoid "pie in the sky" therapies that are not proven to be safe/effective via double blind research studies. Another book I would recommend is "Recognizing Celiac Disease."

 
TERESA

said this on
24 Jul 2009 2:56:12 PM PDT
Can a biopsy be wrong? My son was diagnosed with celiac 3 weeks ago, because of blood tests results at his endo office, never once having any symptoms... not one physical symptom but he has type 1 diabetes, so i know the connection. anyway he has been gluten free for 2 weeks, and has had more upset stomachs, cramps and feels like crap... i don't get it i know the body needs to adjust, but this is not right- can something else cause this damage? He was feeling better before going gluten free. any help please reply.

 
Ema

said this on
25 Jul 2009 8:51:59 PM PDT
Gluten free foods are high in carbs which could be affecting his diabetes and insulin needs. Lay off on all starches for now, check his blood sugar more often, and see if he improves. Also has you know, with type 1 diabetes things can change such as a difference in the amount of insulin needed. This holds true for any dietary changes. Or he may be reacting to something else in his diet. Also give your doctor a call and let him/her know in case you need to take your son into the office.

 
Nancy

said this on
27 Jul 2009 5:18:51 AM PDT
Teresa, I apologize it took a few days to respond and I am sorry for the issues you are having. Unfortunately I am not a doctor and really have only my experience to draw on. I do know from research I have done that some people can suffer from celiac and not have symptoms. As for the biopsy being wrong again I am not sure. But I am not aware of any other issue that causes the villi in the small intestines to be flattened. I would definitely sit and chat with your son's doctor. I know as soon as my husband started his diet his cramps completely stopped and he has seen a great improvement in his bowels and fatigue. Good Luck and keep us posted as to what you learn.

 
Gary Lindstrom

said this on
01 Aug 2009 9:17:03 AM PDT
Of course I was diagnosed with Celiac disease but was not diagnosed until I was 58. I was diagnosed by a dermatologist after having "water" blisters for about ten years. He finally did a biopsy and then referred me to a GI doc for an endoscope which confirmed the loss of the scilla. He told me to go to a dietitian or nutritionist which I did both. Neither had ever heard of Celiac disease. I finally found a waitress in a local breakfast restaurant who was a celiac and she gave me most of the information I currently use. I also refer others to Celiac.com with is wonderful. I think that any doctor or other medical practitioner who is not familiar with Celiac disease is someone to beware of as they could not diagnose many things.

 
Mike Irwin

said this on
06 Aug 2009 6:27:35 AM PDT
I'm sorry to hear that you got charged $500 to see a dietitian. Since my diagnosis in April I've seen 2 dietitians, and have a teleconference with 1 of them once a month. In Canada all dietitian services are covered under our medical plans. I can't imagine getting the bill that you got. Dealing with celiac disease is expensive enough as it is.

 
Zorica

said this on
11 Aug 2009 12:30:44 AM PDT
Dear Teresa,
May be that your son also has some immune reaction to cow’s milk proteins, or to phytohemaglutinin from beans, or to chicken egg albumin? I think that his blood needs to be tested for the immunoreactivity to mentioned antigens. Results from these analysis could point would the additional type of diet would help him.

 
Online

said this on
30 Sep 2009 5:14:00 AM PDT
Hey, I read a lot of blogs on a daily basis and for the most part, people lack substance but, I just wanted to make a quick comment to say GREAT blog!.....I"ll be checking in on a regularly now....Keep up the good work!

 
Online

said this on
30 Sep 2009 6:40:42 AM PDT
There's good info here. I did a search on the topic and found most people will agree with your blog. Keep up the good work mate!

 
Carl Vandors

said this on
30 Sep 2009 8:18:35 AM PDT
I don’t usually reply to posts but I will in this case, great info...I will add a backlink and bookmark to your site. Keep up the good work!

 
Edward Lane

said this on
10 Oct 2009 7:06:50 PM PDT
Generally I do not post on blogs, but I would like to say that this post really forced me to do so, Excellent post!

 
Angie Pichs

said this on
27 Jun 2012 8:26:33 AM PDT
Thank you for this GREAT blog! I have been suffering from stomach issues for years: gases, constipation, stomach cramp, indigestion problems, etc. I had a colon resection September 2010 due to diverticulitis. I have continued with stomach cramps every time I eat. I finally went for a second opinion and this new GI told me I probably have celiac disease. I recently had a blood test and he now wants to conduct an endoscopy. I have stopped eating gluten for now but I feel I need to find a good nutritionist to help understand all this gluten-free diet that is so confusing. Does anyone know of a good dietitian in the Miami area? Thank you!

 
Molly

said this on
04 Oct 2012 11:09:29 PM PDT
First time I've read this blog. I just received diagnosis that I have celiac disease two days ago. I'm also Type II diabetic. This really came out of left field for me. I had an endoscopy because I've turned up anemic and the biopsy results came back. I see my intern and diabetic specialist in 2 days and hope he has a good nutritionist he can refer me to. Does anyone have any suggestions for me? I live in Ontario, California.




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JaneWhoLovesRain, what is odder to me than that there is an older disease that Doctor's have forgotten that explains many of the same symptom's and doctor's do not even think about it today since the "War on Pellagra" was declared over a 100 years and why doctor's don't (at least in the West) think about it any more. Dr. Heaney wrote a nice online article about this topic. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ Here is fairly recent article about how Pellagra can present in patients and the title says' it all from the International Journal of Dermatology. https://www.researchgate.net/publication/227807440_Pellagra_Dermatitis_dementia_and_diarrhea Dermatitis, dementia and Diarrhea are the 3 D's (4th D is death) of Pellagra. Typically it is only diagnosed today if you are in a subset of the population like an alcoholic for example or you have a gastric bypass. See this article from the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJMicm050641 and despite all the signs of Pellagra (skin issues etc.) . . .. Pellagra in it native tongue (Italian) where it was first diagnosed was called "rough/sour skin" who knows that today??????? Very few I would venture to guess. The NEJM can only say they have "Pellagra-like dermatitis" it has been so long since any doctor's seen it they can't (with confidence) diagnose it clinically. But taking Niacinamide 3/day for 6 months can help alleviate your symptom's if indeed the DH of Celiac is the dermatitis of Pellagra being medically misdiagnosed. Here is a an article featured on celiac.com about why/how Pellagra can be confused for Celiac disease. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html Because they haven't seen Pellagra in 75+ years no one recognizes it anymore. ****this is not medical advice. I hope this is helpful. Knitty Kitty and I are the Niacin warriors on this board. See this thread where Knitty Kitty says Niacin helped the itching of DH. If that is so then it might help your DH (if you have it) and your GI problems too if they are caused by co-morbid Pellagra. see my blog post about where I say "I had Celiac Disease and Developed Pellagra" that talks about this in more detail. Again good luck and your continued journey and I hope this is helpful. 2 Timothy 2: 7 ?Consider what I say; and the Lord give thee understanding in all things? this included. posterboy by the grace of God,

I should say I am confused about how to interpret--- Does this mean celiac or no celiac? Thank you all---I greatly appreciate it.

KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust. By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,

Hey all--have Hashimoto's and am being worked up for epigastric discomfort and IBS like symptoms--- My blood work had an IgA within the lower end of normal range, negative TTG, but weakly positive DGP. My endoscopy showed a "nodular" duodenum with the biopsy stating there was "reactive lymphoid hyperplasia"... I have a follow-up with the GI in 3 weeks. Wondering about any help?

DH wasn't linked to celiacs until 1967 from my research...