Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How About In Or Near Ct?


rml97

Recommended Posts

rml97 Rookie

I had an awful experience with Dr, Jeffery Hyams... He is a pediatric GI doctor who is unwilling to accept the fact the there are millions of people with gluten intolerances in our world. He decided becasue I was 13- 14 I was at that age where eating disorders developed... He wouldn't take into account that everytime I put food in my mouth I was doubled over in pain or that I was an athlete who loved to be outside and play soccer. It wasn't even a doctor who cured me, it was a nutritionist. She took one look at me and said "you have the coloring of someone who would have a gluten intolerance... have you ever heard of a gluten free diet?" It had been 4 months and -16 pounds so I was ready to try anything and sure enough the pain became to subside after 4 days and was completly gone within 2 weeks.

To say the least I blame the fact that I still don't have an appetite souly on Dr. Hyams. If he wasn't so willing to write me off with an eating disorder my intestines wouldn't be so damaged and have to take so long to heal. I want to start going to a doctor who would understand considering my last experience with GI doctors was so terrible, but I'm not sure who....

  • 2 months later...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



maitrimama Apprentice

I totally disagree, Dr. Jeffrey Hyams and his team at Connecticut Children's Medical Center are fantastic!We are very grateful that he was put in our path and I think I mentioned Dr Hyams by name in a post ~1 year ago. Based on our experience I would recommend Dr Hyams to family and friends of ours.

In July of 2011 my teenage daughter (15 at that time) was having stomach problems, nothing earth shattering, diarrhea and cramping but the fact that she mentioned it to me and her father made us take notice. Her pediatrician ordered blood, urine and stool tests. The blood test came back positive for celiac's disease and also indicated she was having absorbtion problems. The stool sample had both white and red blood cells in it. Her pediatrician referred us to Dr Hyams. The very next day Dr Hyams contacted us after reviewing our daughter's test results. He retested her stool and got the same results so he scheduled an endoscopy and colonoscopy for the next week. Biopsies indicated she has Celiac's and IBD. The first meeting we had after the biopsies was a 3 hour affair and ee met with Dr Hyams and my daughter was introduced to her team which included a nutritionist, a nurse and a coordinator who all work directly with Dr Hyams. They have all been great.

Unfortunately, because of insurance changes, we had to switch Drs. We are lucky because my daughter's new Dr is working out very well. The new Dr is at Yale New Haven Hospital. After she went through all the records and test results she said that she felt that Dr Hyams had made a vert good diagnosis that she agreed with. She also pointed out that because she has both Celiac's and IBD (which has been indentified specifically to be Ulcerative Colitis) it is not an easy or common case and that she has been in good hands.

I am sorry that you had a negative experience but our experience has reflected what kind, caring and knowledgable pediatric gi Dr Jeffrey Hyams is!

mushroom Proficient

With due respect for your feelings about Dr. Hyams, maitrimama, your experience was a little different from the OP's in that Dr. Hyams was presented with a diagnosis by blood test of celiac. He was not asked by you to make the decision as to whether or not to test for celiac disease. This tends to be the critical factor for celiacs -- finding someone who is willing to test for it. Many of us have not been tested and have self-diagnosed because doctors cast us aside for whatever reason.

You should be very grateful to your daughter's pediatrician. :)

maitrimama Apprentice

Dr Hyams was not presented with a diagnosis, he was presented with preliminary test results and then ordered additional tests. No diagnosis was made until all the test results were in and analyzed. It turned out to be a complicated diagnosis and I appreciate his concervative approach.

Though my experience with Dr Hyams may be coming from a different side of the equation,I am an educated, well informed person and I won't sit back and watch Dr Hyams be bashed without giving my opinion.

mushroom Proficient

Many doctors now will diagnose on the basis of symptoms, positive blood tests and response to the diet. However, I did misspeak when I said "diagnosed". He was presented with positive blood tests for celiac, and merely ordered the biopsy to confirm the diagnosis.

Without "bashing" Dr. Hyams, I think he should re-evaluate his stance that there is no such thing as non-celiac gluten intolerance. There are millions of people in the world who would strongly disagree with him, including now Dr. Alessio Fasano.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    2. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      40

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    3. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Russ H commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,381
    • Most Online (within 30 mins)
      7,748

    Becky Coleman
    Newest Member
    Becky Coleman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.