Thanks Kristen! Seems like my panel is almost a screeming. IgA 145 - that is all it says. Tissue Transglutaminase n 10.
That's great! 19 or less is negative
I admit I didn't interpret the original post that the test results were difinitive-the 145 IgA number made me nervous!
I do agree that with the solid negative blood test I might not persue celiac's any further. It is true that there is a range for "weak positive" from 20-100. The IgA test is great, but doesn't have 100% specifity and sensitivity, which means the body will produce the IgA antibody to gluten most of the time but not all the time, and there's a percentage chance that the presence of this antibody is not because of celiac's. They recommend the full panel rather than just IgA, because IgG antibody (also not 100% in either case) is less likely to be present as a result of gluten, but when it is present it's much more likely to be because of celiacs. The blood tests aren't perfect, but together they usually (not always) lead towards the right diagnosis. But since neither test is 100%, that's why the biopsy is the gold standard for diagnosis.
In our personal experience, DH got sick before the blood test was available. He suffered for years and tried all the purple pills known to man. Until one day, our pediatrician ran the"new" celiac blood test on DS1 because he had stomach aches, was weak and wasn't growing... Bazinga! We're very grateful for the blood test! This was our first experience with celiac's and we did have the biopsy to confirm the positive diagnosis. Shorty thereafter, DH had a positive blood test and did not get the biopsy. Fast forward a couple of years, and DS2 became symptomatic, and we also opted not to have the biopsy after the positive blood test... if it looks like a duck, quacks like a duck, and the duck genes are in the family, then it's celiacs! lol
On the flip side, one of my best friends became ill and decided to try going off gluten. She had such relief! She still wanted to get the celiac test done but put it off and stayed gluten free for over 6 months. When it came time for the test (which her docs felt was important as they were also trying to diagnose a thyroid disorder that's often associated with celiacs), she tried loading gluten for 2 weeks, made herself very sick, and her test was inconclusive. 2 years later, her daughter became ill, but her symptoms were much different, mostly having to do with moodiness and fatigue as opposed to effecting her growth and stomach issues... it took a long time to arrive at a diagnosis, which turned out to be full-on celiacs. If she had known she had celiac's and could have passed it on to her daughter, and if the pediatrician knew of the family history, they would have been looking for that and she could have been diagnosed much sooner and suffered so much less (they actually recommend all immediate family members get the blood test when a family member gets diagnosed). She really beats herself up over that. When I hear that someone might be experimenting with gluten free without ruling out celiac's first, I'm always nervous that they'll end up going through a similar agonizing situation and I try to share information that supports getting the testing out of the way. It's much easier to test first and move on, then to try gluten free and test later.
In my opinion, the diagnosis does matter. Celiac literature supports this as well. The approach to the gluten free diet can be greatly effected by the perception of need. Some non-celiacs with gluten intolerance, like clanmcullogh, react as badly or worse.
Many react less, some can tolerate cross contamination, some can even eat gluten occasionally without suffering ill effects. My concern about not having an accurate diagnosis is the perpeption that it's okay to experiment with gluten here and there and not be so vigilant about cross contamination. With an allergy or intolerance, trace ingestion or occasional cheating may be okay now or one may grow out of it in the future, but with celiacs it's never okay, for the rest of your life. With allergy or intolerance, the same type of intestinal damage (usually!) doesn't occur, so gluten might make you feel yucky, but won't give you anemia or osteoperosis from inconsistency or unknown cross contamination. Every bite or cheat could be causing you damage that could take years to repair, if reperable at all.
Additionally, the genetic aspect does have significance. If the family history is known, then testing can be performed as soon as symptoms arise-if it's not known, symptoms are far reaching across several different systems in the body and can be misdiagnosed as a whole variety of different causes, and the delay of diagnosis can be agonizing and damaging. Personally, I also just think it's important to know if I'm carrying a gene that I could pass on to my child, so I could be proactive in catching the onset as soon as possible to prevent damage and suffering. Even just knowing what to look for in DS2, he was barely sick at all, we got his blood test the week his stool changed. DS1 was sick for about 8 months and dropped half way down the growth chart because we didn't know to look for it.
This is not all to win votes
there's no one-size fits all when it comes to health! This is only my point of view on things, and while I strive to learn from reputable sources, in the end the interpretation is still just my opinion, and I value the opinions of others as well. I just know that I've learned a lot by others sharing perspectives and seeing things from a different point of view. Especially when we started out with celiacs, overwhelmed is not even the word. I learned so much from people who were willing to share on the internet, and I still do. Like, I didn't know that non-celiac gluten intolerance could look SO much like celiacs! I've never heard of a case like yours and your family, clanmccullogh! It actually sounds like what you have is way worse than celiacs! I'm SO sorry you're so sick-that sucks!
I wish there was an answer for you, it would drive me crazy not knowing what's causing such a severe autoimmune reaction. You're right though, the most important thing is knowing how to tackle it. I hope you're able to overcome all those defficiencies and feel healthier!!!