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Noni

By Noni
in Coping with Celiac Disease

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Noni Rookie
Noni
Posted

To all the wonderful people I've met on this awesome site!

Since joining, you've all been so supportive and helpful to me that I'm coming to you today for help again. Here's the situation:

I have a 4 y/o niece who has suffered with stomach issues since birth. These problems have become severe. We took her to a large children's hospital this week where they ran blood work on her, an a stool specimen. The specialist just contacted my sister to inform her that the blood work was extrememly abnormal; says it shows Celiac Disease.

However, he still wants my niece to have an endoscope. The doctor claims the blood test is without doubt. I have no clue about how the accuracy of the blood test. We don't see why she should have to endure this invasive procedure. She's been traumatized enough.

Another main question for you: How can I send a link to my sister so that she can join this website to get help on the "Gluten-free Diet". I don't know how to do that. Would someone please respond quickly so that she can be helped also? Thank you in advance.

Noni

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psawyer Proficient
psawyer
Posted

Here is the link to the main forum page:

https://www.celiac.com/gluten-free/

Skylark Collaborator
Skylark
Posted

There is also great information on the main site. Send her to https://www.celiac.com/. Right in the middle of the front page, there is a series of links on the gluten-free diet.

As for the endoscopy, your sister needs to find out whether the doctor will positively diagnose celiac disease without it. Your niece will likely need doctors notes for school, especially if her celiac is severe enough to have positive bloodwork that young. If she was positive on anti-endomysial IgA or anti-deamidated gliadin peptide, she is almost certainly celiac as those two tests are about 98% accurate. Some doctors still want the "gold standard" of a positive biopsy, and they also want to get an idea of how bad the damage actually is. Bloodwork and villous damage are not very well correlated. If the result was anti-TTG (tissue-transglutaminase) she does need the endoscopy to rule out other problems because that test is less specific. Also, endoscopy isn't just for celiac. Your sister can talk to the GI doctor and see if he has a suspicion of any other GI problems and his clinical experience is suggesting he should have a look.

Celiac is genetic, so your sister and her husband need to be tested.

Noni Rookie
Noni
Posted
  • Author

Here is the link to the main forum page:

https://www.celiac.com/gluten-free/

'

Thank you so very much!!!! I appreciate it more than you

could know. She will be so happy. Noni :D

Noni Rookie
Noni
Posted
  • Author

There is also great information on the main site. Send her to https://www.celiac.com/. Right in the middle of the front page, there is a series of links on the gluten-free diet.

As for the endoscopy, your sister needs to find out whether the doctor will positively diagnose celiac disease without it. Your niece will likely need doctors notes for school, especially if her celiac is severe enough to have positive bloodwork that young. If she was positive on anti-endomysial IgA or anti-deamidated gliadin peptide, she is almost certainly celiac as those two tests are about 98% accurate. Some doctors still want the "gold standard" of a positive biopsy, and they also want to get an idea of how bad the damage actually is. Bloodwork and villous damage are not very well correlated. If the result was anti-TTG (tissue-transglutaminase) she does need the endoscopy to rule out other problems because that test is less specific. Also, endoscopy isn't just for celiac. Your sister can talk to the GI doctor and see if he has a suspicion of any other GI problems and his clinical experience is suggesting he should have a look.

Celiac is genetic, so your sister and her husband need to be tested.

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

curiousgirl Contributor
curiousgirl
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

Hopefully, Mom will take the same interest as Auntie! (learn how to pronounce those big words and what they mean)

cassP Contributor
cassP
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease.

your neice didnt get it from you- but she recieved genes from your sister.. and possibly her father too. the genes are obviously in your family- and your sister is either a celiac too- or just carrying one or more genes.

i have celiac, i got 2 DQ8s- one from BOTH my mom & dad. im trying to get them tested. MY AUNT on my mom's side was just diagnosed with Crohns.. i wrote her a LENGTHLY letter explaining the genetics- and that her GI should test her for Celiac- and she never replied :(

i hope your neice gets on the diet, and i hope her parents get tested too. good luck :)

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Skylark Collaborator
Skylark
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

Hannah couldn't have gotten the celiac gene from you because she is not your child. It means your sister is probably also carrying the genes and needs to be tested. Your parents should be tested as well.

Hannah almost certainly has celiac if both those tests were high. If your sister doesn't want Hannah to have the endoscopy, she needs to talk to the doctor about getting a diagnosis without it for school. Also, gluten free might help her Asperger's and your sister should consider casein-free as well. A lot of autistic kids do better off both.

  • 2 weeks later...
Noni Rookie
Noni
Posted
  • Author

Hannah couldn't have gotten the celiac gene from you because she is not your child. It means your sister is probably also carrying the genes and needs to be tested. Your parents should be tested as well.

Hannah almost certainly has celiac if both those tests were high. If your sister doesn't want Hannah to have the endoscopy, she needs to talk to the doctor about getting a diagnosis without it for school. Also, gluten free might help her Asperger's and your sister should consider casein-free as well. A lot of autistic kids do better off both.

Thanks so much for all the advice. I truly appreciate it. Will definately find a way to pass the info on.

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