So good news, my little lady is not testing positive for celiac right now via the blood test! After I told her we high-fived and I gave her a package of Ritz crackers. I sure do miss that buttery crunch. And thank ALL of you for weighing in with your crazy stories about diagnosis, or lack of. It makes being on this unpleasant ride a little bit less lonely. And, jeez, what craziness that goes on with this sprue.
But even with this all clear (for now), still there’s some bad news. And that bad news basically breaks down to this: What the &%*$^!!??
I don’t want to push my daughter into the “gluten sensitive” camp yet since it doesn’t seem to be an all-the-time situation. And I would love it if neither of my little ones ever had to deal with this, like, ever. But she is low in A, B and D and is also borderline anemic. She is also tired as all get out and has some GI issues (not consistent, not all the time) that scream “celiac.” And since she has the gene, and since my mother recently died after suffering unknowingly for years, well, I’m anxious.
Something is up. And I realize that saying about when you hear hoof beats, think horses, or maybe it’s think zebras, not horses—you know what, I don’t know if I’m supposed to be thinking horses or zebras, or who that saying is actually for—the point is, hello autoimmune disease as the answer for most physical problems that have plagued my family. And hello, genetic testing which makes me just wonder when that other shoe is going to drop.
This. Is. Crazymaking.
But at least her days of asking her Pops to bring her back bagels from New York are not yet over. That, and cream puffs.
After 20 years in childcare, I’m seeing more issues with foods and children as time passes. Are there more or are we more educated and sensitive to our children’s health? What we used to call picky eaters is now looked at in more depth. Don’t get me wrong please. My husband and daughter are both gluten intolerant. But I can tell you the difference between how I reacted and how my parents would have are world’s apart. Best wishes on finding how to help your child find relief. It is painful for everyone in the home.
Thank you, Katy Trail.
Did she eat gluten regularly for a couple weeks before the test? I’d still push for the biopsy to confirm before being sure it’s not celiac – my mom’s only symptom was anemia… just saying…. I get it, like I said – have a 24 yr old I’m pretty sure has it and he says.. ya, I’ll give up gluten except for pizza… and in his world GF pizza isn’t pizza. Don’t envy you at all!
I know. It’s such a weird disease it makes me want to ban all gluten forever. At the same time, I want to give her what she can have before it’s too late. I know, it’s totally emotionally and not AT ALL rational.
Hooray on the negative celiac diagnosis but it could be anything from Irritable Bowel Syndrome to….I don’t even know what the names are for all of the weird digestive issues people end up with. Hugs. Hoping it’s something so simple everyone face palms.
Well, I never tested positive with the blood test OR the biopsy…. it was a screaming case of DH that got me. I have 3 AI diseases and all of the symptoms are the same so who knows what causes what.
It’s a tough call, I feel for you.
You are going to get her in for an endoscopy, right?… Right?…. You *know* the blood test misses nearly a quarter of celiacs with severe damage and two-thirds of celiacs with partial damage if only the tTg is relied upon. What is her EMA result?
(((hugs))), sorry it’s such a push but better to know more in advance than later…
I haven’t met with the GI doc yet about next steps, just got the initial info from the nurse. It was just strange because last time she had the antibodies in her blood test, and this time she didn’t. So…it seems less than last time?
AAAAHHHHHH! I really don’t want her to have an endoscopy but I also don’t want her all jacked up.
My son had his endoscopy at 7, it really wasn’t too bad and he’s nervous about all kinds of stuff. He would be happy to reassure your daughter if she gets scheduled for one. I would advise you to get a copy of all the serology results because they do several different tests in the “celiac panel”. Best of luck, I know it’s hard to muddle through this stuff!
If she tested positive once, but then not again, I’m guessing that second time she wasn’t eating any or (enough) gluten. you HAVE to be eating gluten to come up on the test and it’s a lot of gluten. The antibodies are produced as a result of the gluten.
My 6 year old is about to go for her one year follow up, we absolutely expect her bloods to be negative because she’s not eaten gluten for a year. If her bloods DO still show the antibodies, I’m heading for her school with an attitude you wouldn’t believe!
Coeliac diagnosis 101:
You keep eating gluten, they test your blood and do an endoscopy; it’s scary but not really that bad for a child and mine enjoyed the DVD of her intestine afterwards (she was 5 at the time) Really, without an endoscopy you can’t know what’s going on.
You go gluten free and give it a year, then retest hoping that the test will be NEGATIVE and that the intestine will have healed.
The only way you can ever expect to see the bloods show up again is if you do the “gluten challenge”, that is: 6 weeks of eating at least the equivalent of 4 slices of a bread a day prior to the test. If you aren’t eating gluten, you won’t produce the high levels of anti-bodies, even if you’re Coeliac.
Now, here’s the other bit that you need to bear in mind and it’s a real kicker…
Even if you have a Coeliac pre-disposition, current thinking seems to be that, like some other autoimmune diseases, it needs an environmental trigger. So it can lie there like a sleeper waiting to wreak havoc at some point, you just don’t know when. This is in part why people are typically diagnosed later in life.
What blood test is coming back negative? I tested negative for my gliadin levels – but when they went ahead and did a endoscopy/colonoscopy – the diagnosis was celiac. I know when my family has tested negative for those same levels and the doctors are like – no celiac! (Even with me, once those numbers came back negative, they thought the same thing, even though the gene blood test showed I have the gene – we went for the endoscopy because I was vomiting every day for 6 months and obviously something was going on.)
Hooray and crap, April. Geez. I really do hope you get some answers soon and the kind the make you go phew rather than f$@!
Thanks Dana. You always know just what to say. 😉
My blood test was negative for celiac, however, I still react to gluten (so, I’m in gluten sensitive camp). We found out through the elimination challenge. And I had all the typical celiac symptoms – anemia, fatigue, tummyaches etc.
Have you had her thyroid checked? My autoimmune disease is thyroid related but something about gluten and the thyroid don’t mix. Anemia and exhaustion can be related too. Just thought I’d give you another stop on your path to answers.
Thanks. They also did a thyroid test. I’m waiting for the whole panel.
I am glad the results were negative. I am gluten sensitive, my blood tests and endoscopy were negative and i confirmed the diagnostic with the elimination diet.
I also took another blood test that checks for food intolerances and it confirmed my gluten and wheat sensitivity as well as some others. I am not sure if is available in every country but this is their website: https://www.alcat.com
It might help you finding out the problem.
Hope everything works out well.
Thanks so much, Natalia.
Pingback: Tales From the Celiac Disease Foundation Expo & Conference | Gluten Is My Bitch
Oh man…Poor kid! I just (literally two days ago) was diagnosed with Celiac (we are waiting on the biopsy to come back but GI is 98% sure. And it has been quite a long couple months…weirdly my boyfriend has Celiac, too! The not knowing is just SO frustrating. I have never been so happy to be told I have a disease! Hope they figure it out soon!!
Pingback: She’s Allergic to What?!? | Bake Sales Are My Bitch
Pingback: Who Runs the World? #GFSquad Girls Do (Udi’s Contest + Love) | Gluten Is My Bitch