• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 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

Doctor Not Following Through

Rate this topic

Recommended Posts

I am concerned that my doctor is not following through with me. I am basically left alone. I did get a prescription to a dietitian but I had to ask for it. Last month before changing my diet I was so very sick. I had such horrible diarrhea for a couple of weeks and the pain was so bad I could not even walk, I felt like my intestines were raw. Then I started getting feverish and I have tiny red blood blisters on my legs. I did get an appointment with my gyn who put me on antibiotics and pain meds. I am slowly getting better with a very careful diet and vitamins.

Shouldn't the doctor be watching me for other signs of malabsortion? Right now my diet is pretty limited since I am trying to heal and I am starting to lose weight again. I don't even have a followup appointment.

Also shouldn't my son be tested too? He definitely shows signs. As a child we had a hard time keeping weight on him, he gets pimple like sores on his legs and back and around his mouth that don't respond to antibiotics (I have even taken him to a dermitologist who could not get rid of them). Right now is the first time in his life he is gaining weight. He is almost 16 and is on the high school wrestling team. He eats alot more but his diet is very high protein and not alot of junk food. He does get very tired and sleeps alot, over 12 hours on the weekends.

I am curious what other doctors did after diagnosis. I know I am not going back to this one but I don't know where else to go. Also did they do tests for other food allergies? I seem to be getting more and more sensitive to preservatives. I guess I am not quite sure what to do next.

Share this post

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

I have had no follow up either, but I was never very sick at all. I think that my internist, the one who DXed me, just wasn't concerned enough by my inconclusive test results (though she accepted the results of the dietary challenge) and otherwise fairly good health to check on anything else. She's just an internist, and isn't _that_ knowledgeable on celiac disease, though she tries, so I figure if I want to get further tested, I'll ask her. You might try asking your doc - or, like you said, finding one who will better treat your case.

Share this post

Link to post
Share on other sites

My GI doctor after concluding that all my test were normal, except my Enterolab test which she dismissed, said I had IBS and she would see me in a year! I was still sick at that point, but was starting the gluten-free diet. I was a little annoyed, since I had wanted some tests to check for nutritional deficiencies, but figured that I could handle it on my own. I'm doing fine, except for the occasional accident with gluten or dairy. But I feel much healthier... I would still like a bone scan and some other tests, but if no one will order them I can't get them done...

I would find a new doctor if possible if I were you, or ask for a follow-up appt. if it is not possible to get another doctor. I personally don't want another follow-up with my doctor and she is the second referral I've gotten. I just don't feel sick enough anymore to go pester the doctors for more tests or a new referral.

God bless,


Share this post

Link to post
Share on other sites
Guest gillian502

I would absolutely insist on a follow up appt, and if they won't see you find another dr. I push for everything I need medically and do not take no for an answer, because I would've lost my life if I had. If you're enough of a pest, they will relent and test you properly, especially if you're as ill as it sounds like you are.

Share this post

Link to post
Share on other sites

My son was dx about three weeks ago. His doctor called me and said he was positive for celiac disease and that was it - no follow up, no suggestions, recommendations, nothing. She also did not want to test my other children since she didn't feel they were exhibiting the SAME symptoms. ( I know you can be asymptomatic). I had to insist they be tested and I am still waiting for results.

I was totally left on my on. Someone recommended Betty Haagmans gluten-free book so I used that and celiac.com's list of safe and not safe list to get me started.

Share this post

Link to post
Share on other sites
Ads by Google:

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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Beth N
  • Popular Now

  • Topics

  • Posts

    • Here is a partial list of what I no longer suffer from as a result of not eating wheat. Some like the sleep apnea and gerd and back pain and addiction to alcohol were almost immediate. The foot pain is improved to just numbness sometimes. My long term depression went away when I added vitamin D 10,000 iu a day for a year, but the improvement started almost immediately. Muscle tone and energy improved when I added iodine. one sheet sushi seaweed a day. My Fibromyalgia is controlled with 15 mg oral Prednisone a day. I remember as a kid waking up and having to pick the dried mucuos off the roof of my mouth. That is gone and for the first time in my life I am a nose breather. Drink lots of water to help with the mucous if it is thick. Some mornings mine is like rubber cement. I need to quit smoking now.  You can improve have faith, but healing takes time. Stay the course. A Romaine lettuce salad everyday helped the gut pain. Gerd shortness of breath sleep apnea back pain snoring prostrate hypertrophy contact lens protein buildup night vision improved cataracts reduced head hair growth foot pain sleeping no more than 2 hours at a stretch slow healing no energy. Pretty much bed ridden. 
    • Celiac Disease is damage to the nooks and crannies in our intestines leading to malnutrition, vitamin deficiencies with all the various symptoms that make it so hard to diagnose. Then you add years of the antacids, antibiotics, Tylenol, opioids, alcohol, etc., each with their own particular side effects and damage. Now you've got a toxic environment that kills off the beneficial bacteria increasing malnutrition. Theoretically you can eat anything except gluten. But wheat is so ubiquitous in our diet and economy there are unlimited opportunities for cross contamination. So read the label. Use common sense. If there isn't a label it doesn't have wheat so you can eat. Big Food likes to add wheat to everything because it is addictive and helps them ensure you can't eat just one. Why on earth else would Campbells Tomato Soup have wheat listed as an ingredient? Meantime your body is in distress from malnutrition so you need to be sure to replenish D3, and Iodine for starters and treat and support any other symptoms while you heal. Good nutrition without wheat is the only way to stop progression. And just like chewing paint chips made with lead is bad, so is food with wheat.   well said, doesn't need a label.
    • We use pure cherry juice with our snow cone machine. Makes for a nice dessert after dinner.
    • Hi Kurasz, How's it going?  Any change for the amazingly better?  Or slightly better?  
      If not, hang in there, and keep praying! :)
    • Garden of Life brand Dr. Formulated Organic Fiber. It's certified gluten free. Also free of psyllium husk, dairy and soy. Also found that just simply increasing fiber intake works wonders. Perhaps try skipping a protein for at least one meal and fill up on veggies and fruits.
  • Upcoming Events