Jump to content
  • 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):

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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,075
    • Most Online (within 30 mins)
      10,442

    Nan7472
    Newest Member
    Nan7472
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
×
×
  • Create New...