Celiac Or Gluten Sensitivity Or Neither?

[quandary]

We've put our 16 year old son on a gluten-free diet due to lab test results and symptoms and family history that would suggest he has either celiac or is gluten sensitive (although his endocrinologist doesn't think he should be gluten-free):

- My son, daughter and husband all have type 1 diabetes

- My daughter was diagnosed with celiac a number of years ago

- My husband, son and I were all given results from Dr. Fine's that suggested gluten sensitivity

- My son's recent genetic test reflected positive for the DQ8 DQB1*0302

- His Gliadin IgG and TTG IGG have been consistently 'slightly' above the normal range (referred to by his endocrinologist as 'trace elevation'), his IgA has been under 3, his alkaline phosphatase has also been high.

- He has a number of symptoms consistent with celiac and/or gluten sensitivity: headaches, stomach-aches, skin rashes, muscle aches, short stature, unexplained weight gain, irritability, sleepiness

He has been gluten free for 3 1/2 months and says he doesn't notice much of a difference; however, I think some of his symptoms have decreased. How long can it take to detect changes on a gluten free diet, if indeed there is celiac or gluten sensitivity?

Has anyone experienced a similar medical history and/or have any advice?

[Takala]

Has your son been really sticking with the gluten free diet, or is he being a teenager and blowing it when you're not looking ?

[rosetapper23]

Oftentimes, dairy, soy, oats, and corn are eliminated when a person first starts a gluten-free diet, because many people with celiac react badly to them. After three months, you can start adding them back into your son's diet one by one to see if he has any reaction to them. Since he has also suffered from rashes, which might be Dermatitis Herpetiformis, you should also eliminate iodine, which can keep the lesions active.

I wasn't diagnosed until I was 47, and it took 18 months before I felt fully well. Remember, it can take a while for the intestinal lining to rebuild so that it can absorb nutrients again. Until that happens, a person can still feel unwell and fatigued.

[Skylark]

Low total IgA and type 1 diabetes are both celiac risk factors, as is the DQ8. That plus the slightly elevated TTG IgG suggests you're doing the right thing. Remember that a gluten-free diet can prevent full-blown celiac, even if he doesn't feel much different on the diet.

The only thing that went away quickly for me were the GI problems, and those stopped in only two weeks. It took me over a year and a lot of vitamin and mineral supplements to get over all the mental effects of gluten.