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monicameme

Almost 11yr old son, celiac maybe?

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Welcome! 

Yes, it appears that your son most likely has celiac disease.  The next step is to get a referral to a GI.  Have your son continue to eat gluten daily until all testing is complete.  Until then learn more about testing and the benefits of an endoscopy (sounds scary, but plenty of parents here were glad they had it done).  Of course you should discuss this with your GI.  

celiac disease is definitely genetic and is an autoimmune disorder like Type 1 diabetes or Hashimoto's Thyroiditis  so, all first degree family members should be tested -- even if symptom free.

http://www.cureceliacdisease.org/screening/

This would be a good time to research the diet and learn all that you can about celiac disease.  It takes time to learn but it can be done.  

Hang in there!  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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1 hour ago, monicameme said:

Thank you.  We should test for Graves and hashimotos too correct? 

No.   I am sorry I was not clear.   Celiac disease is an autoimmune disorder like (similar) Graves or Hashimoto's.   If those disorders run in your family, you might discuss it with your doctor.  For example, when I was diagnosed with celiac disease, my doctor tested my daughter for celiac disease.  He also check her thyroid since we have a very strong family history of thyroid disorders.  

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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If there was blood in his stool they might want a endoscope and a colonoscopy, red blood in the stool means there is something in the large intestine. Dark tar like stool would suggest smaller intestines or something further up. I had blood in my stool for years never could figure it out til we learned it was Ulcerative Colitis. Of course his could be something simple like a polyp, small cut, hemorrhoid etc.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Our insurance won't allow us to go to the GI docs closet to us (within 30 min to an hour), so i found a pediatric GI  2 1/2 hrs away.  She has good reviews on the internet so hopefully the trip will be worth the time.  I've been doing lots of reading.  The book i have is from 2010.  Can anyone recommend a good book maybe more updated to 2017, hopefully i can find it at my library?  Thanks

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On 7/9/2017 at 11:22 PM, monicameme said:

We ran some blood work after blood in his stool.

Deamidated gliding abs, IgA 119, strong positive >30.  

T- transglutaminase  (tTG) IgA 69, positve >10. 

Is this suggesting he does have celiac?  And do we go see a GI doc? What other tests and hoping to avoid a biopsy. 

You could try talking to your Ped and seeing if he/she will diagnose based on a decrease in antibodies gluten free. His blood work is very positive so there really is no doubt he is celiac but you need the 'official' diagnosis to keep him safe in school. There is some research showing that biopsy is not needed in children when blood results are so clearly positive.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I'm hoping the GI will say no endo but i know its not a huge deal if we do from what i've read, so we'll see.  Our doc really doesn't know much about Celiac and i'm not entirely comfortable just doing that with him.  He seemed to think it was possibly just a wheat allergy but when i got on the internet it seems it's more likely Celiac which is different from what i am reading. 

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45 minutes ago, monicameme said:

He seemed to think it was possibly just a wheat allergy but when i got on the internet it seems it's more likely Celiac which is different from what i am reading. 

I was always of the impression that very strong positive celiac numbers like you posted could only be celiac. Not a doc though.

 

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Me either, that's why i think it's important to see the GI since my GP doesn't seem to have much knowledge on the subject.  I wasn't sure if these were considered very strong, although it looks like it, i don't know how it is compared to others with Celiac.  As long as she (GI) is going to give a celiac diagnosis i am happy not having him do an endo.  We go on Monday so we'll see. 

 

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Our GI dr said a strong positive blood test and positive genetic screening for celiac were sufficient to confirm celiac. So we went that route instead of the endo. Our son was 2 at time of diagnosis. I'd talk to your dr about referral to a nutritionist if possible too. We saw one and she was helpful for the initial transition. It was only a few months into the gluten free diet and we knew more than the nutritionist, but right away she gave us info we wouldn't have thought about like replacing kitchen supplies.

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2 hours ago, monicameme said:

I'm hoping the GI will say no endo but i know its not a huge deal if we do from what i've read, so we'll see.  Our doc really doesn't know much about Celiac and i'm not entirely comfortable just doing that with him.  He seemed to think it was possibly just a wheat allergy but when i got on the internet it seems it's more likely Celiac which is different from what i am reading. 

A wheat allergy would not produce those numbers not to mention those are not the blood tests one would do for a wheat allergy. The tests that were done are for celiac disease.

BTW, if the GI gives him a dx, which I'm sure will happen whether or not she does an endoscopy, then all 1st degree relatives need to be tested every 2 years in the absence of symptoms & immediately if symptoms present. Everyone to be tested will have to be eating gluten for at least 12 weeks before testing.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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On 7/17/2017 at 7:16 PM, squirmingitch said:

A wheat allergy would not produce those numbers not to mention those are not the blood tests one would do for a wheat allergy. The tests that were done are for celiac disease.

BTW, if the GI gives him a dx, which I'm sure will happen whether or not she does an endoscopy, then all 1st degree relatives need to be tested every 2 years in the absence of symptoms & immediately if symptoms present. Everyone to be tested will have to be eating gluten for at least 12 weeks before testing.

Thanks for the info.  I will ask the GI about my twin sister and nephews to see if they need to be tested regularly too.  I'm hoping our insurance will pay for gene testing also to help rule any of us out if possible.

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Think about this.  I have only had my daughter tested for celiac disease.  She tested negative.  She will need to be retested sometime in the future or when symptoms develop.  But genetic testing?  This might impact her insurability in terms of health and life.  I do not have the answers, but I would research this before having everyone tested.  Some 40% of the population carries the genes to develop celiac disease.  Only a very few actually develop it.  Insurance companies will deny you for all kinds of lame reasons.  Just be careful. 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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We saw the GI last week and had the endoscopy and colonoscopy on Mon.  Colonoscopy good, just a small hemorrhoid.  She called with all the results from blood and scope and he has moderate to severe celiac. She said he has reflux too so we are doing omaprazole for two months.  We began his diet on Tues and I'm still trying to reconcile having a family who can eat gluten and one who can't.  It's really hard with the cross contamination thing.  So still getting that figured out and how we get everything safe...  We will all get tested next week.  

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Me too as well as that you're getting the rest of the family tested. 

 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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You, your son and the rest of the family will learn the gluten-free diet.  It takes time,  but soon it will become normal and routine.  

Glad to hear you have a benchmark on his small intestine.  Keep copies of all his records and look into a 504 plan for school.  PErsoanlly, I would not trust our district to provide a gluten-free lunch, but it will help with classroom activities and you won't have to pay for a meal plan while at college (maybe that stupid rule will change for all students).  

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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20 hours ago, cyclinglady said:

You, your son and the rest of the family will learn the gluten-free diet.  It takes time,  but soon it will become normal and routine.  

Glad to hear you have a benchmark on his small intestine.  Keep copies of all his records and look into a 504 plan for school.  PErsoanlly, I would not trust our district to provide a gluten-free lunch, but it will help with classroom activities and you won't have to pay for a meal plan while at college (maybe that stupid rule will change for all students).  

 

I've already called the school but the counselor isn't in till next week when they start...But i will get the 504 then and talk to them about cooking class because he won't be able to be in that.  And i already bought lunch boxes and containers because i don't trust the school to do lunch.  What do you mean having to not pay for a meal plan at college?  Because he wont be able to eat there you mean? 

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37 minutes ago, monicameme said:

I've already called the school but the counselor isn't in till next week when they start...But i will get the 504 then and talk to them about cooking class because he won't be able to be in that.  And i already bought lunch boxes and containers because i don't trust the school to do lunch.  What do you mean having to not pay for a meal plan at college?  Because he wont be able to eat there you mean? 

Many US universities require that you buy a meal plan if you are in the dorm.  Problem is not all are really safe for celiacs.  It depends on the staff (remember most are students working there).  .   I happen to be on a state campus all the time.  I would never eat in the dining rooms.  It is something I need to champion when I get the time!  I am also not current on this issue.  Hopefully, a college parent or student will chime in.  

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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