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peterjohn123

Daughter's Test Results

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My 3 years old just had some blood work done and based on this her pediatrician is saying she has Celiac. I was wondering if anyone knows with a level of 33 Units if that it exponentially high for the TTG IGA or just mildly high. My wife and I can't decide if we want the biopsy or not since most research says that if the TTG IGA is positive it is 98% likely the biopsy will be positive. Any feedback is welcome. Thanks.J

GLIADIN AB, IGA           5 Units                     Range: 0-19

TISSUE TRANSGLUTAMINASE IGA         [H]  33 Units                  Range: 0-19

GLIADIN AB, IGG           18 Units                   Range: 0-19

TISSUE TRANSGLUTAMINASE IGG          16 Units                   Range: 0-19

IGA, SERUM           [L]  56 mg/dL                    Range: 70-310

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Hi peterjohn123,

Welcome to the forum! :)

I think this parapgraph snipped from the Celiac Disease Foundation link below answers your question.  There is also lots more interesting information on that page that might be interesting to you.  One thing you should know is that celiac is related to certain genes, so it can be prevalent in families.  Having the gene/genes doesn't mean you automatically get celiac disease, but perhaps should be tested for it on a periodic basis.  Siblings of the carrier/s (nice term eh?) may also have the gene/s and develop celiac disease.  these genes can also be related to other autoimmune conditions and so those may show up in family members.

Since celiac disease is a lifelong condition, it makes sense to get the full diagnosis if possible/feasible.  However, that is not always possible and there are risks with any internal procedure, however low they are.  A recent poster had an endoscopy on their 2 year old and had no problems from it.

The end is run is that either way, a person has to decide if they are going to stick with the gluten-free diet or not, and that is easier for some people if they have the full diagnosis.  Others don't need that.  There is also the issue of schools and a 504 plan that is designed to accommodate a child's needs.  That may or may not require a doctors RX for a gluten-free diet.  School districts vary on that.

It might be easier for all if the entire household goes gluten-free, at least at home.  Children sometimes don't understand restrictions and that could lead to problems if there is gluten containing food around the house.

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/diagnosis/

For children with symptoms and signs of malabsorption, a very high tTG-IgA titer (>10 time upper limit of normal), and a positive EMA (antiendomysial) in a second blood sample, some physicians may recommend avoiding endoscopic biopsy, and directly starting a gluten-free diet. Others may recommend genetic testing for additional confirmation. Resolution of symptoms while on a gluten-free diet may be used to confirm the diagnosis.
Read more at https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/diagnosis/#W2lF4rqy4KK940cG.99

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My then two year old was diagnosed with celiac a year ago. With that being said, I'm in no way an expert. :) His ttg level came back at 300, so we were referred to a pediatric gi specialist. Because of the high level, he was certain our son had celiac and offered the option of 1) stay on gluten until a biopsy could be done or 2) go gluten free immediately and get genetic testing. We chose the genetic testing route because our little man was so sick and in such a critical growth period, and we wanted the immediate gluten free start. When the genetic test came back, the gi dr gave us a definitive celiac diagnosis. I wanted that to help with school (504 plan) and future doctors. I think you have to decide by talking to a gi dr, looking at the current health of your child, thinking about the money/insurance coverage for the various testing, etc what is best for your kiddo and family situation. I also think a positive test result is a positive regardless of if it's a 31 or 600, but I'm no expert. If you're finding it hard to get a timely appointment with a gi dr, ask your general physician/pediatrition to make the appointment. They are often able to work their magic and get you in much sooner. I would second the suggestion above in making your home a completely gluten free space based on the age of your child. I know it's the only place we feel 100% comfortable with our son. I wish you the best of luck! There's nothing worse than when your kiddo is sick and you're struggling to help them the best you can.

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My daughter's only symptom was throwing up for a day every month to month and a half. No other symptoms. And after about the 6th occurrence her Dr. decided to do the Celiac Panel. Also her Vitamin D level came back at 6.7 which is the lowest her Dr. had ever seen. 

I'm just curious if the Celiac could cause malabsorption and that is the reason her D level is so low. 

She is otherwise a healthy and happy kid. No colds, fevers, coughs, etc. 

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1 hour ago, peterjohn123 said:

My daughter's only symptom was throwing up for a day every month to month and a half. No other symptoms. And after about the 6th occurrence her Dr. decided to do the Celiac Panel. Also her Vitamin D level came back at 6.7 which is the lowest her Dr. had ever seen. 

I'm just curious if the Celiac could cause malabsorption and that is the reason her D level is so low. 

She is otherwise a healthy and happy kid. No colds, fevers, coughs, etc. 

My understanding is that most vitamin D actually comes from sun exposure to bare skin and good, functioning kidneys. Vitamin D can be found in some foods but that is not where we get most of it naturally. However, vitamin D is crucial in our ability to absorb calcium from our diet. So, when our vitamin D levels are low, it can lead to rickets (in kids) or osteomalacia (in adults) - both are weak bones. If one has untreated celiac and vitamin D deficiency, you could definitely have low calcium absorption. 

 

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http://www.cureceliacdisease.org/faqs/

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

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My son's symptoms were weird stool and low weight with sporadic vomiting (maybe once every three weeks). He was deficient in vitamin d and iron when the gi dr checked him. Eating gluten when you have celiac causes the villi in the intestines to flatten and not process/absorb vitamins and minerals. We had a follow up blood draw/exam after three months gluten free, and his vitamin d and iron were back to normal so we knew his intestines were healing enough to process the vitamins better. We took him back three weeks ago for another check and his ttg has dropped from 300 to 26! We are so happy the gluten free diet has helped. But he is back to being iron deficient and is back on a supplement. We are hoping his ttg levels will drop below 20 and his vitamins will all be normal at the next check. Most importantly he feels so much better and is growing like crazy! Things we never noticed (like vocabulary and attitude) made drastic improvements within the first three months of going gluten free. It might surprise you the changes you see in your little one once she's gluten free for awhile. A couple good books for kids are "The Celiac Kid" and "Eating Gluten Free with Emily". They are kid friendly and informative, and they helped our kiddos better understand our changing diet and what our youngest was experiencing and the importance of being careful.

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