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

It Is Offical!

Nikki'smom

Recommended Posts

Nikki'smom Apprentice
Nikki'smom
Posted

Well my DD had her scope yesterday and the dr said he didn't see any serious signs of Celiac but he could tell her villi was swollen so he has no doubt about the diagnosis. Which I knew alreadybut it was kind of nice to hear it. Almost a relief you know?

This was the 1st time I meet this dr because we saw another dr in his practice that was new to the practice but she didn't have rights at the hopital our insurance took so he had to do the scope. Well I LOVED this dr! He said all tehrright things and didn't talk down to us said everything I wanted to hear and researched he should do! I was thrilled. He said they would take 6-8 samples and if it came back negative eh would send it to another lab because he couldn't see with her blood test results it coming back negative. Turns out he took 10 samples in her intestine and 4 or 6 in her bowel! I should have the oficail results today. He did say go on the gluten free diet starting today and if I had any probolems with her school to just give him a call and he would send a letter! He also told me that he is in the procces of opening a office in my town soif I have to go to him I could just go there and/or if my ped wants to run the labs they are friends so he can certianly run them and keep each other posted! Needless to day i am switching to this guy!

So today is putting together a letter for her school and planing on stopping by talking to the proper people there as well as making up a letter for her soccer team about snacks.

This may sound funny but now that we know it is almost a relief i feel very blessed we were diagnosed in a few short weeks instead of the yrs I have heard it can take.

Thanks again for every ones help I am sure I will have many more questions as our gluten-free journey begins :D

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

Celiac.com Sponsor (A8-M):


EBsMom Apprentice
EBsMom
Posted

I'm glad you have some answers! Good luck getting started with the diet. We're in month 4 and it's starting to seem like second nature now! :-)

Rho

Griffin's Mama Newbie
Griffin's Mama
Posted

Congrats on finding out ! I know that must be a huge relief to know what is wrong. i truly hope that things get easier for you . Good Luck!

ShayBraMom Apprentice
ShayBraMom
Posted

I'm so sorry to hear about the Diagnosis but I'm also very happy for you that you finally know! Now you guys cabn concentrate on avoiding what feed the "enemy". Years ago I knew something wasn't right with my son but I couldn't put the finger on it!For two years I fought to have an EEG getting done. When it was finallly done it did turn out that I was right, he did have some form of Seizuredisorder. I still remember the feeling I had, I was so relieved to find that I wasn't imagining this and also to know that now we could get him better, but also kind of sad at the same time, knowing that in fact they did find somethig which meant to me that my boy wans't all ok- so weird to feel all of the opposites.

Big hugs and congrats, as you know it takes in average a lot of people 10 yrsa. to get diagnosed since Celiac has so many faces!

Well my DD had her scope yesterday and the dr said he didn't see any serious signs of Celiac but he could tell her villi was swollen so he has no doubt about the diagnosis. Which I knew alreadybut it was kind of nice to hear it. Almost a relief you know?

This was the 1st time I meet this dr because we saw another dr in his practice that was new to the practice but she didn't have rights at the hopital our insurance took so he had to do the scope. Well I LOVED this dr! He said all tehrright things and didn't talk down to us said everything I wanted to hear and researched he should do! I was thrilled. He said they would take 6-8 samples and if it came back negative eh would send it to another lab because he couldn't see with her blood test results it coming back negative. Turns out he took 10 samples in her intestine and 4 or 6 in her bowel! I should have the oficail results today. He did say go on the gluten free diet starting today and if I had any probolems with her school to just give him a call and he would send a letter! He also told me that he is in the procces of opening a office in my town soif I have to go to him I could just go there and/or if my ped wants to run the labs they are friends so he can certianly run them and keep each other posted! Needless to day i am switching to this guy!

So today is putting together a letter for her school and planing on stopping by talking to the proper people there as well as making up a letter for her soccer team about snacks.

This may sound funny but now that we know it is almost a relief i feel very blessed we were diagnosed in a few short weeks instead of the yrs I have heard it can take.

Thanks again for every ones help I am sure I will have many more questions as our gluten-free journey begins :D

mftnchn Explorer
mftnchn
Posted

Good news to confirm what the issue is so you know how to address it. The doc sounds great, seems like he needs to be cloned all across the country!!

Nikki'smom Apprentice
Nikki'smom
Posted
  • Author

Thanks every one!

The dr called with the 'ofical offical ' results and the biopsy came back as we knew it would. Thakfully I prepared myself and the rest of my family including my dd so yesterday was pretty good for a start!

ShayBraMon, I turely believe in a mother's intuition! Mom (and dad's ;) have it there is no doubt!

I went to her school yesterday but the whole staff was in meetings. The secratery was there so I left my letter and lists for the nurse with her. She said the nurse should call me back today. I figured if I don't hear from her by 10am or so I will give her a call. I really want this all settled before school starts on Tuesday. I want to make sure every one is on board. I know her teacher was great about the possibility so now that is it a fact i want to work out a game plan so to speak with her.

My head is spinning already between school starting and both kids in soccer, my 5 year old son in karate, and Nikki in tumble/cheer. Then add the fact that both kids are in different schools (the kindergarten is in a seperate school), then add to it learning all of the Celiac stuff I feel like I am going miss something important like pick up a kid form an activity! LOL

So please bare with me if I have some silly stupid questions!

mother2gf3 Newbie
mother2gf3
Posted

hey I know the relief you are feeling, to know what the problem is . I have 4 children 3 with celiac confirmed with blood and biopsy, my 6 year old was diagnosed the end of may, my 4 year old in june and my 2 year old in august so we are new to this also. My son the 6 year old was so sick for so long he was vomiting daily, he was extremly underweight, pale, lack of energy and a huge distended belly, he went thru so many tests and drs appointments, when we found out the biggest weight lifted off my shoulders because, even though its a huge lifestyle change, I now know what we are fighting. My son has gained almost 10 pounds and has grown a whole inch since finding out, It seems like I have a whole new happier, healthier kid now. What a change. good luck to ya.

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

Celiac.com Sponsor (A8-M):


Nikki'smom Apprentice
Nikki'smom
Posted
  • Author

Yes I would Love to be able to clon my dr! I wish I could!

mother2gf3, OMG your poor little one! I am thrilled to hear he is doing so much better though that is wonderful!

IT just breaks my heart knowing all these little ones are hurting! I am VERY bnlessed that my dd is so asymptomatic. Yes she does get tummy aches and is tiny (48lbs at 7)but for the most part she is active into sports and always on the go and never let this stop her. i am anticipating some issues once she is gluten-free for a few months because I am sure by accident she will get glutened and i am expecting it to be worse becaue she never showed the pain before. Hopefully I am very wrong though!

buffettbride Enthusiast
buffettbride
Posted

It's kind of odd to congratulate you, but it is so nice to have a diagnosis--especially when so little damage had been done and you know just what to do to keep it from progressing.

Soon it will become second nature to do the gluten-free thing and even with a largely asymptomatic child, you might even notice some changes for the better.

Good luck!

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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,041
    • Most Online (within 30 mins)
      7,748
    Vfoley422
    Newest Member
    Vfoley422
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.