Opinions on screening results

[Tg1998]

I’m hoping you all can give me your opinions on my daughter’s screening results and symptoms. 

I took her to the pediatrician for yet another round of thyroid testing as she has “looked thyroid “ for years according to any doctor we see for whatever reason. Again, the numbers came back “normal” but I had also asked if we could test her for gluten problems.

Her symptoms that brought us in to the doctor are progressive joint and muscle pain, brain fog or as she calls it “empty brain”, constant hunger and weight gain. She has a diagnosis of ADD and I don’t doubt that diagnosis but ADD is not progressive and she has been having increasing problems with memory and processing. She also has vitiligo and is followed by a cardiologist for tachycardia. She has asthma as well.

The only number to come back positive on the celiac panel was her TTG IgG (it was 12 with the normal being under 5). She is not Iga deficient. The results also showed vitamin D deficiency (20 when above 30 is considered normal) Her ferritin was considered “normal” at 25 with 20-200 being considered normal so I think that number is a little close.

The doctor said she wasn’t sure of what to make of these results so she called a GI doctor. His response was,  based on the fact that there is no family history, she doesn’t have GI symptoms and she was only positive on the TTG IgG, she does not have celiac and does not need to see GI or go gluten free. Our pediatrician wants to send us to a rheumatologist for anti inflammatory medication (her ana and Rh factor were negative) and a neuropsychologist to look into adhd meds. She also suggested perhaps my daughter is just depressed. While she is frustrated with her symptoms, she’s actually very happy. The doctor also suggested we try a gluten free diet for two weeks to see how she feels.

Does anybody have any thoughts on this? Anyone have a similar experience, similar symptoms?

Thanks!

 

[cyclinglady]

2 minutes ago, Tg1998 said:

I’m hoping you all can give me your opinions on my daughter’s screening results and symptoms. 

I took her to the pediatrician for yet another round of thyroid testing as she has “looked thyroid “ for years according to any doctor we see for whatever reason. Again, the numbers came back “normal” but I had also asked if we could test her for gluten problems.

Her symptoms that brought us in to the doctor are progressive joint and muscle pain, brain fog or as she calls it “empty brain”, constant hunger and weight gain. She has a diagnosis of ADD and I don’t doubt that diagnosis but ADD is not progressive and she has been having increasing problems with memory and processing. She also has vitiligo and is followed by a cardiologist for tachycardia. She has asthma as well.

The only number to come back positive on the celiac panel was her TTG IgG (it was 12 with the normal being under 5). She is not Iga deficient. The results also showed vitamin D deficiency (20 when above 30 is considered normal) Her ferritin was considered “normal” at 25 with 20-200 being considered normal so I think that number is a little close.

The doctor said she wasn’t sure of what to make of these results so she called a GI doctor. His response was,  based on the fact that there is no family history, she doesn’t have GI symptoms and she was only positive on the TTG IgG, she does not have celiac and does not need to see GI or go gluten free. Our pediatrician wants to send us to a rheumatologist for anti inflammatory medication (her ana and Rh factor were negative) and a neuropsychologist to look into adhd meds. She also suggested perhaps my daughter is just depressed. While she is frustrated with her symptoms, she’s actually very happy. The doctor also suggested we try a gluten free diet for two weeks to see how she feels.

Does anybody have any thoughts on this? Anyone have a similar experience, similar symptoms?

Thanks!

 

Welcome!

Did your doctor also order the DGP and EMA celiac tests?  Not all celiacs test positive on the TTG.  You get kids seem to do better with the DGP IgA.

Celiac disease should not be dismissed simply because she doesn’t have GI symptoms.  I did not.  Just anemia and I had some pretty severe damage.  

 

[tessa25]

It only takes a positive on one celiac test to result in an endoscopy/biopsies being done by a GI. She has one positive so if it were me I'd find a GI to do an endoscopy/biopsies.

[Tg1998]

On 5/6/2018 at 4:21 PM, cyclinglady said:

Welcome!

Did your doctor also order the DGP and EMA celiac tests?  Not all celiacs test positive on the TTG.  You get kids seem to do better with the DGP IgA.

Celiac disease should not be dismissed simply because she doesn’t have GI symptoms.  I did not.  Just anemia and I had some pretty severe damage.  

 

The other tests were:

Gliadin IgA 2 Negative 

Gliadin IgG 1 Negative 

She’s on day 6 of a gluten free diet and is already saying her memory seems clearer. My husband and I can see it a little too, she can tell us more details about her day and can find things! I’m so hopeful that this will help her. I hope it will begin to ease her joint pain soon as well.