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

By rml97
in Doctors

Recommended Posts

rml97 Rookie
rml97
Posted

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
maitrimama
Posted

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
mushroom
Posted

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
maitrimama
Posted

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
mushroom
Posted

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.

Go to topic listing

  • 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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.