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

7 Year Old Diagnosed Yesterday

Daisymouse

Recommended Posts

Daisymouse Newbie
Daisymouse
Posted

My 7 year old was diagnosed yesterday - her celiac blood panel came back postive. Her symptoms are sloshy belly, going potty during meals, and very small stature.

The Family Dr said for us to seek a pediatric GI. I found one and set up an appointment for 12/6. I asked if she could go gluten-free now or if we should wait until after the appointment. I was sent to the nurse and left a message, waiting on return.

I have two questions 1) why does she need to see the GI, we have the diagnosis, shouldn't we start the diet? and 2) what are they going to do that the GI - after a panel has come back positive?

Thank you so much for your help. I have been reading the board a ton the last two weeks and have gained so much knowledge.

~Missy

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

What was her panel results?

Most celiacs go to a GI to help keep track of how they are doing healing wise. At the GI, they could do an endoscopy which would check for damage in the small intestine.

Do you want to do the Endocscopy or not is the question now. If so, keep her on gluten until it is done and if not, start the diet.

Also, you will need to get accomodations at her school via the 504 plan. Those with celiac, for example, cannot play with brand name playdough because it contains wheat. The same goes for lunch time and what have you. There will be other things as well that this falls under that i cannot think of right now.

Daisymouse Newbie
Daisymouse
Posted
  • Author

I want her to feel better. Is there value to the Endocscopy if we already have a diagnosis?

~Missy

GottaSki Mentor
GottaSki
Posted

Yes, there is value in determining the damage to her digestive system. Is it essential - NO, although many doctors will not officially diagnose without it.

Do you know if your daughter had a complete celiac blood panel? Any nutrient testing - Celiac Disease prevents proper digestion/absorption of key nutrients - it is essential to monitor these.

If all blood tests are complete, it really is up to you when to remove gluten. If you are unsure which tests were completed, request written or electronic copy of all her blood work (this is a good idea for any/all medical testing). Feel free to post her results here if you have any questions.

I would recommend calling the GI's nurse again and let her know you understand the reason to remain on gluten is for further testing and ask if it would be possible to schedule an earlier appointment or be placed on a cancellation list as your daughter has serious symptoms and you would like to remove gluten as soon as possible.

It is a good idea to meet with the Gastroenterologist before removing gluten - preferably one that has training and practical experience with Celiac Disease.

Hang in there :)

Daisymouse Newbie
Daisymouse
Posted
  • Author

Thank you so much! Yes, I want her to be the healthiest she can be. I am an "act on it now" kind of girl, and feel at a loss of control. We have been dealing with her weight for 7 years and I feel like there is a light at the end of the tunnel. I know they did a full celiac panel and food allergy test. I will request the results. I will call the nurse back and leave another message.

Thank you for your help, I know I will be back with more questions. Can't wait until I am able to post answers because of knowledge :-)

~missy

GottaSki Mentor
GottaSki
Posted

Completely understand and feel free to ask questions - it really is the best way to speed the frustrating transition process. If you haven't yet, take a look at the "Newbie 101" thread - it contains loads of useful tips.

Welcome to the forum Missy!

Oh...forgot to add. Celiac Disease is genetic - you, her father along with any siblings should have full celiac blood panels every 3-5 years - more frequently if any symptoms arise.

megsybeth Enthusiast
megsybeth
Posted

Do you have to go to that GI? My 4YO has to wait a long time to get into a celiac specialist but a regular GI is doing the endo sooner. I think its terrifying to have these young kids starving for these tests. If she loses more weight, is listless, maybe a trip to the ER at a local childrens hospital will get her scoped sooner?

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

Celiac.com Sponsor (A8-M):


Daisymouse Newbie
Daisymouse
Posted
  • Author

The nurse called me back. Yes she has to stay on gluten as normal - everyone was correct, thank you! And luckily there was a cancelation so our 12/6 appointment got moved to 10/30. Yay! We are seeing a pediatric GI for consultation and then he will do the scope on the soonest Friday that he can fit her in. My blood work will be done on Monday. I will ask about getting my son's done as well. My husband luckily has no symptoms and doesn't have any other autoimmune, so he will bring it up at his next physical. I personally have hypothyroidism and sjogrens.

Thank you all for you help, now I am going to jump over to the Newbie 101 thread :-)

~Missy

shadowicewolf Proficient
shadowicewolf
Posted

OH wow good news :) I had to wait 3 weeks for mine.

You might wanna look into a genetic test too.

GottaSki Mentor
GottaSki
Posted

That is very good news :)

Glad to hear you are being tested as well...many of us have multiple autoimmune disorders as AIs tend to run together. You may find removing gluten improves your Sjogren's and Hypo symptoms. Should your celiac tests be negative it would be a very good idea to remove gluten from your diet along with your daughter to monitor for symptom improvement/resolution.

You likely were already tested for the antibodies found in Hashimoto's Disease (Autoimmune Thyroiditis) given your hypothyroidism, but just thought I'd mention it as I have a minor disbelief that doctors will automatically run proper tests ;) If they haven't been run you should be able to add them to your list for Monday.

Have a great weekend!

Darn210 Enthusiast
Darn210
Posted

Glad to hear that you could get in much sooner.

So you know to keep her on gluten until you see the GI/have the endoscopy but now is a good time to sample some gluten free items or try out some recipes. That way you'll be a bit more prepared when you take her gluten free and already have a bit of experience under your belt.

Good Luck and Welcome to the forum.

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
      133,021
    • Most Online (within 30 mins)
      7,748
    Mary larson
    Newest Member
    Mary larson
    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

    • 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.