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

Biopsy Results Are In.....

Sierra's Mommy

Recommended Posts

Sierra's Mommy Apprentice
Sierra's Mommy
Posted

Hello:

For those of you who are familiar with our story (newly diagnosed by blood test 6 yr. old), I wanted to post an update. The Dr. called with the results of the biopsy and it was confirmed that Sierra does have Celiac. While we are relieved to have some answers and begin the road back to full health (she is still pretty sick--especially since Mom let her have ice cream last night at a birthday party), we are also experiencing the myriad of emotions you all went through--sadness, anger confusion, etc.

However, as mentioned, we are now focusing on healing her--and of course, getting the rest of us tested. Our case probably set the record for fastest diagnosis. It was less than two weeks ago when I brought Sierra in to her ped for diarrhea and gassiness. I asked about Celiac, based upon my own web searches about her symptoms. Of course, the ped's reply was, "Oh, I don't think so. We normally catch that in toddlerhood." I pushed for a blood test, and she agreed. The blood test came back positive. We then scheduled an appointment with the Ped GI. For seven weeks out. I pushed it to four weeks out, and then when I saw how sick she was--unable to even go to school, due to diarrhea and fatigue, I demanded an earlier consult. I grabbed a cancellation appointment and got in that very afternoon. The Ped GI said, "Oh, I don't think this is Celiac. It usually doesn't suddenly start with watery diarrhea." She ordered a biopsy anyway, and I demanded again that it be done sooner, rather than later. It was set for the next day. After the biopsy, the GI said, "Things looked good. However, I won't say for certain that she doesn't have Celiac until I hear back about the biopsy". Three days later, we have received the confirmed diagnosis.

I share this story as an example to other parents, who are intimidated by Dr.'s and the whole topic. Arm yourself with knowledge and trust your instincts! We are our children's best advocates. No one else has a better knowledge of their symptoms, their distress--or cares more about their future, than us.

I look forward to being an active member of these boards, and I look forward to learning from all of the wisdom available to me through other's postings. Thanks in advance for your continued support!

Proud-to-be....Sierra's Mommy

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

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

I am so happy to hear that you have your confirmation now and you can start getting your little girl healthy. (It's always strange saying that...)

Unfortunately, your story is too common, but it just goes to show that as parents, we do know our children better and when we know something is wrong, it pays to keep pushing. Thank you for sharing your story, and I do hope you stick around. This site is a great source of information!!

Tallforagirl Rookie
Tallforagirl
Posted
I share this story as an example to other parents, who are intimidated by Dr.'s and the whole topic. Arm yourself with knowledge and trust your instincts! We are our children's best advocates. No one else has a better knowledge of their symptoms, their distress--or cares more about their future, than us.

Good for you for pushing the issue, and I'm glad it resulted in you getting a diagnosis.

How bizzare, to say celiac disease does not start with diarrhea, or if the child is not a toddler then it can't be celiac disease!! Hopefully those doctors who dismissed your suspicions have learned a lesson seeing their dismissiveness was proved to be unfounded.

Hope Sierra feels better very soon.

Lisa Mentor
Lisa
Posted

You're a super mom, with great instincts. Excellent work!

happygirl Collaborator
happygirl
Posted
You're a super mom, with great instincts. Excellent work!

I agree 100%.

I am always amazed by mother's instincts....good for you for being your child's advocate!!

Let us know what we can do to make the transition easier. I'm looking forward to having you on the board!

Some good info: Open Original Shared Link

caek-is-a-lie Explorer
caek-is-a-lie
Posted

You're a good mom and I bet it's a huge relief to know for sure that it's Celiac. I remember when my niece was so sick--starving to death--and they didn't know what it was. they'd fight all the time...amongst themselves, with the doctors... They were so terrified for her but once they found it it was Celiac for sure, everything got so much better for my family. I hope things get better for your family too. Celiac is certainly not the end of the world when you get the diet down pat. It's always such a relief knowing what it is...then you can take control and do something about it. :)

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.