JL000V

Im very nervous, not so much of the procedure as the separation because she's only 2 and very attached to me. But hopefully we can turn the page on this chapter of our lives once the endoscopy is over.

I guess that was my concern. It just seemed so invasive given the fact her blood work was positive.

I trusted Tyson's "GLUTEN FREE" label to be a last minute go to option, and for that I lost 2-3 days of productive life.

It does stink. It took a while to learn not to trust a lot of processed foods. You might want to call Tyson and tell them about it. Some companies will batch test the product to see the gluten content and share it with you if you ask them to.

That's when I was finally referred to a GI who tested her for celiac and boom, she came back positive. Total shock.

I was hoping to avoid an endoscopy so I took her to a few more GIs to see if anyone would diagnose her based on the blood work alone. And one GI at UCLA flat out said, "Interesting that the first dr tested her for celiac based on constipation alone. I wouldn't have done that."

Positive bloodwork is a diagnosis of celiac. I'm not sure false positives can happen - however false negatives are very common. It is odd to me that a GI (or more than 1 in this case) would think they need to scope a toddler unless she is having other problems outside of celiac. Did they give you a reason for doing it? (like wanting to assess damage or did they tell you it's the only way to positively diagnose). Also, many uneducated doctors think that you can't have celiac unless you have diarrhea which isn't true - many celiacs present constipated.


Edited to add a few links supporting blood test only diagnosis without biopsy in children:

From 2005: "Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children, for whom (and for the parents) endoscopy and biopsy is a major issue." Link: http://www.celiac.co...age1.html<br />
From 2011: "This month the Journal of Pediatric Gastroenterology and Nutrition reports children who have the celiac gene and test positive in serologic (blood) testing, may not need to have the biopsy." Link: http://thesavvycelia...me-celiac-kids/

Celiac Center in Maryland: "The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present. " Link: http://www.celiaccen.../celiac/faq.asp

Taterhart, the last link also provides information on genetic testing:

"As an autoimmune disease, celiac disease is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop celiac disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop celiac disease, rather, that they have a genetic compatibility with celiac disease. Conversely, the absence of DQ2/DQ8 almost certainly rules out celiac disease. "

LOL I don't blame you. If it's important to get a formal diagnosis for your kids then yes you need to put them back on gluten and see a Dr. as soon as you can (the longer you keep them gluten-free the harder it will be to get a proper diagnosis). I don't have kids so I can't speak to how they diagnose the little ones but I assume they do a blood test and not an endoscopy. Perhaps someone else can give you more details on that piece.

It sounds like you are OK not having a formal diagnosis so that's good. You'll find many people here who are the same way and I personally feel that if your body says it doesn't like something then listen You might consider genetic testing to see if you all have the genes - it doesn't mean that you, or any of your family members, actually have celiac it is however a good thing to know if you carry the genes.

Most "stocks" are indeed gluten-free, although not all. However, remember that if a stock has wheat, it has to list it. Personally, stock is no longer one of those things that automatically freaks me out.

richard

Richard is correct but I've seen both wheat and barley in stocks very recently - the barley didn't surprise me becuase I've noticed that for years in Trader Joe's brands but I have never seen a stock with wheat gluten it until last week.

College Inn brand chicken stock has wheat gluten. And, at least one of the Trader Joe's stocks has barley in it so if you are still learning always check the label or go with a brand you know is safe - the ones off the top of my head are Costco, Pacific, Kitchen Basics, Swanson, Progresso, and Imagine. I'm sure most of the store brands are gluten-free as well.

Unfortunately that doesn't help you when it comes to processed foods sometimes.