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7 Year Old Diagnosed Yesterday


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10 replies to this topic

#1 Daisymouse

 
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Posted 26 October 2012 - 08:32 AM

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
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#2 shadowicewolf

 
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Posted 26 October 2012 - 08:45 AM

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.
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#3 Daisymouse

 
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Posted 26 October 2012 - 08:50 AM

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

~Missy
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#4 GottaSki

 
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Posted 26 October 2012 - 09:12 AM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 Daisymouse

 
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Posted 26 October 2012 - 09:15 AM

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
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#6 GottaSki

 
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Posted 26 October 2012 - 09:24 AM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 megsybeth

 
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Posted 26 October 2012 - 11:20 AM

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?
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#8 Daisymouse

 
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Posted 26 October 2012 - 01:02 PM

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
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#9 shadowicewolf

 
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Posted 26 October 2012 - 01:34 PM

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

You might wanna look into a genetic test too.
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#10 GottaSki

 
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Posted 26 October 2012 - 02:15 PM

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!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 Darn210

 
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Posted 27 October 2012 - 08:16 AM

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.
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Janet

Experience is what you get when you didn't get what you wanted.


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