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

Great Experience At Beth Israel In Boston


Cara in Boston

Recommended Posts

Cara in Boston Enthusiast

I am going through the testing process now for both myself and my 5 year old son. Since our primary care doctor is with Mass General, that is where we started. I was getting frustrated with both the long delays in between testing and my son's doctor simply not answering any of my questions. It takes forever just to get someone to call me back. Here's his timeline: November Dr. Visit, December first blood tests, resultst take two weeks and are positive, can't get follow up appointment until January. Get more blood tests. Two weeks for results. Need endoscopy. Can't get appointment until March 10th, etc. etc.

We have switched to a Doctor from Children's Hospital and I am expecting it to be much better.

For myself, when I got my initial blood tests back, I made an appointment at BIDMC (they have a celiac unit). Went yesterday. Got a diagnosis. Got an appointment for a gastroscopy 2 days later. They also set up follow up visits and a meeting with a Celiac Diatician. They were friendly, organized, and FAST. I feel so much relief and no longer frustrated and angry about this whole process.

If you are in the Boston area, skip the rest and go straight there.

Cara

  • 1 month later...

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



Celiac.com Sponsor (A8-M):



Evangeline Explorer

It would be great if the Beth Israel center became affiliated with Cyrex Laboratories (www.CyrexLabs.com). It is a new lab that caters to Celiacs and identifies CROSS-REACTING foods like potato, rice, corn, coffee and many other foods. Look at Cyrex Lab's page and look at the huge array of cross-reactive tests and familiarize yourself with it. Then call Beth Israel and ask them to begin working with Cyrex Labs so that Celiacs can find out their cross-reactive foods. So far, I have discovered I am also cross-reactive to corn, soy and nightshade plants.

I've already called them and I don't think they took me seriously (they weren't familiar with the concept of cross-reactivity in Celiacs).

Gemini Experienced

It would be great if the Beth Israel center became affiliated with Cyrex Laboratories (www.CyrexLabs.com). It is a new lab that caters to Celiacs and identifies CROSS-REACTING foods like potato, rice, corn, coffee and many other foods. Look at Cyrex Lab's page and look at the huge array of cross-reactive tests and familiarize yourself with it. Then call Beth Israel and ask them to begin working with Cyrex Labs so that Celiacs can find out their cross-reactive foods. So far, I have discovered I am also cross-reactive to corn, soy and nightshade plants.

I've already called them and I don't think they took me seriously (they weren't familiar with the concept of cross-reactivity in Celiacs).

It's hard enough for most docs to believe that there are that many people with wheat problems out there. Doctors do not address food issues well at all in the US so they are not going to be responsive to a lab which is not in their network and won't make money for them. I think these types of labs are fantastic and very cutting edge but you can also have testing done on your own. I did and that was the only reason I got well.

Thanks for this info, by the way! :)

  • 4 weeks later...
lermy Newbie

Do you mind me asking which doctor you saw? I might need to switch from my GI doc out in the burbs.

Thanks!

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. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

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

    • Total Members
      132,920
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.