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):

Finally A Great Doctor


sarahjo

Recommended Posts

sarahjo Newbie

my doctors office asked me for advice on celiac, they have done the work and I have been raising a celiac toddler. (They just agreed with me that she has it this week) I have never been so suprised. I put my foot down and never gave up, i knew she had celiac, they tried to prove it medically, but she got sick and sicker before they could get accurate test. (She does carry the gene for celiac,) the diet is what has opened their eyes. i do think you should be tested, but my daughter is already on a feeding tube, in the 5 months she ate gluten she developed asthma, sleep apnea(possibly), iron deficieny. i know she will improve with time. I just wanted to say thank you to the doctors that do listen to their patients and not just the books.


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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

i'm glad you got such a good doctor, so many of us have not been that fortunate, but glad you are, it's very nice to get a good doc.

TCA Contributor

My kids drs. are convinced for the most part too. It's to the point that the ped GI asks me if I want any other tests run. Their pediatrician took a continued learning type of class on Celiac to help my kids. It's so great when they care. I'm also glad your doctors are listening. I've been thinking about you. How is your little girl doing?

sarahjo Newbie

We are so lucky to have a great doctor, but don't get me wrong all the other specialist don't agree. but as long as out main doctor does, that is all that matters to me. katarah has already started to feel a little bit better, not a whole lot but better. I am exhausted, drained, yet at the same time relieved. you probobly never hear someone say yeah i have celiac. but after all that we have been through i am. last year they investigated me for child neglect, that is when I started the diet. I have been in the childcare business for 10 years. i never would neglect my children, i probably do the opposite, they are a little spoiled. it is so sad the things celiacs have to go through just to have people listen. i still have problems with family and friends understanding from before and now again. i would love some food ideas. don't worry about her milk allergy, i have learned to substitute. it is hard to start the diet again, and adding the milk allergy with it. but hey i have an answer.

Guest nini

I'm glad you have a good one... I'm lucky that my daughter's pediatrician supported me as well, sometimes you have to be your childs best advocate and fight for what you know is right. I'm sorry you were investigated for neglect. At one point I was threatened with that because my daughter was failing to thrive. They assumed I wasn't feeding her. They had a hard time grasping that she just wouldn't eat (probably because eating was too painful).

keep me posted on how she does. My daughter was 3 when I put her on the diet and now at 6 she is so very very healthy! Her current Dr. is amazed at how healthy she is.

floridanative Community Regular

Kudos to you for not giving up! That is so great to hear you have someone who will listen and knows that you know yourself and your kids better than any doctor ever will.

tarnalberry Community Regular

I'm glad your doctor was willing to listen to dietary results. Some will, and it's a good thing when they do. Diagnostic tests on young children are notoriously slippery, and sometimes you just need them to be healthy, period!


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



Celiac.com Sponsor (A8-M):



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...