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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Doctors
      9

      Second chance

      @Jmartes71, Have you tried a naturopathic or holistic doctor? Some posters in the past have commented theirs were more helpful than mainstream doctors.
    2. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      @HectorConvector, Have you tried taking 500 mg of the Thiamine Mononitrate that you have left? Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand. Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency. No harm in trying it. Neuroplastic...
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Doctors
      9

      Second chance

      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,671
    • Most Online (within 30 mins)
      7,748
    brad Mccarroll
    Newest Member
    brad Mccarroll
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Second chance

      By knitty kitty · Posted

      @Jmartes71, Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector,  Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?   Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.    Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.   Try taking 500 mg Thiamine Mononitrate and look for health changes.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever 
×
×
  • 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.