Teenager Facing Celiac Panel After 5 Months gluten-free

[Mattie's mom]

Teenage son saw a gastroenterologist for the first time last week. AFter hearing our extensive family history of undiagnosed but likely celiac disease and my sons story, she offered to run a celiac panel after 2 weeks on a gluten diet. (Son was breastfed for 3+ years, a chubby healthy baby, then by 2nd grade was tall and very thin. Gained weight on a Gluten-free Casein-free diet, but then "cheated" his way back to a still-tall but skeletal build. Last year in middle school, he developed terrible constipation with belly pain and headaches and missed lots of school. After that he agreed to be gluten free again, and has felt better since.) So now after about 5 months gluten free, we finally get an appointment with a GI doc, and are trying to survive 2 weeks of a gluten diet. Headaches are back, with terrible irritability. Are we all suffering for nothing to get bloodwork done on only 2 weeks of gluten? Second question: Is anyone familiar with Great Plains Laboratory's testing? Thank you.

[Ursa Major]

After being gluten-free for five months, it is extremely unlikely that your son's tests will be positive. Five months should have been enough time for a kid to heal, and two weeks back on gluten will not be enough to destroy his villi again, and give him positive test results.

I am afraid he is suffering for nothing, and that GI is clueless about celiac disease. Even if he would go back on gluten for three months, he might not get accurate results, two weeks are way too short.

You know that gluten makes him sick, and he knows it as well. He should have had the testing done before going back on the gluten-free diet, it is too late now. The only test that will still be accurate is testing from Enterolab, as it will give accurate results up to a year after going on the gluten-free diet.

He might as well not make himself sicker and get back on the diet. I wished there weren't so many ignorant doctors out there who think they understand about celiac disease, when they haven't got a clue.

[nannyb]

I say you have your diagnosis. If going back on gluten makes him ill he is at least gluten intolerant. Personally I have no faith in the blood tests since I know so many people with false negative results. Doctors who must have an official diagnosis are idiots. I know, my GI told me to continue eating gluten and when my endoscopy showed damage then I should go off gluten for good. Hello.

Even if your son's test results are negative what will you do. If the answer is stay off the gluten then don't go through the pain. You know, he knows whether your doctor accepts it or not is their problem.

A gluten free diet is not like taking pills if someone doesn't need it it won't hurt them. We all know our bodies better than any doctor (and our children's as well)

I have two teenagers (oops one turned twenty) who had negative blood tests but maintain gluten free because they know they need it. There choice not mine. Maybe you should let your son decide.

[ravenwoodglass]

You son has had a positive dietary response and became ill after adding gluten back in. That IS diagnostic. The best diagnosis there is. As many as 30% of us in even in the end stages of the disease will show negative on testing. My repeated negative blood tests lead me into a celiac world that is not fully recoverable from. My doctors never told me what they were testing for, in other words I was never given the chance to even try the diet as no doctor ever even told me what celiac sprue was. I was so ill by the time I was diagnosed that one of my children told me the family would understand if I committed suicide. That child was 15 at the time.

2 weeks on gluten will most likely show a false negative because after being gluten free the antibodies we form may not have built up enough to show on the blood test. The gluten challenge has already given you the answer. Do make sure you tell the doctor all effects of the gluten challenge. Also many GI don't know that celiac is anything other than a gut disorder. Mine had no idea that it could cause the neuro problems that I have. He was also clueless that arthrits can be another 'side effect' of gluten.

You may want to consider Enterolab. They do fecal antibody testing that can be much more sensitive than blood testing.

I hope your son is back to the gluten free diet soon and feeling better.

[Mattie's mom]

We went ahead with the two-week challenge, which was waste of time, because the results (I requested copies) are negative. So we see the pediatric GI doc tomorrow, and we'll see what she says. My son is still eating gluten and is at the five-week mark now.

The first week he complained of headaches, took a lot of Tylenol and missed a day of school. He soon became his old gassy, gassy and cranky self. But by the end of the first week the pain had subsided. And what was really weird was that his chronic dandruff disappeared. Hmmmm. Constipation continued, as always. So we'll see what the doc says tomorrow. In spite of the "two weeks is enough time" bit, I like her. She listened to everything I said about our family history -- including my mother's two miscarries and four preterm births and my partial placental eruption with this son and my seizure disorder and chronic gassiness, both of which are gone since I've been gluten free for several months myself, and, and, and --- and dictated every bit of it in her clinic note (have a copy of that too).

Do you think it's worth it, since we're at the five-week mark of the gluten challenge, to request another celiac panel? Or see if they'll allow HLA testing?

Anyway, THANK YOU, all for your replies. I have learned so much from this forum.

And, Ravenwoodglass, your comment about your teenager saying the family would understand if you committed suicide really touched a chord: My dear mother did commit suicide after decades of what I velieve to be undiagnosed celiac, with attendant osteoporosis, arthritis, asthma, neuralgia, depression -- I know I'm leaving something out, but you get the picture.

Anyway, thanks again, so much.

[Ursa Major]

Unfortunately, it could take three to six months, maybe even a year for your son's villi to be in such bad shape again that the blood tests will be positive. Do you really want him to keep eating gluten that long? He could have irreparable damage by then, or develop diabetes or other autoimmune diseases. Once you have those, you have them for life.

[Mattie's mom]

Diabetes and systemic lupus - those are a couple more of my mom's issues, and the diabetes surfaced in her 70's.

I understand what you're saying, but the down side of going through with the two-week gluten challenge is that now my son says: "I'm fine, Mom. Look, I'm gaining weight. I don't want to go off gluten again." The good news is our gastroenterologist said we could run the panel again - yes, in about a year - and if his sister is diagnosed with celiac earlier that she will order HLA testing right away. Sister's serology came back at way, way high.

[Ursa Major]

Can you afford Enterolab testing? It is still accurate up to a year after going gluten-free. It convinced my youngest daughter to finally go gluten-free (she is 16).

[nora-n]

Here it says six weeks to six years:

Open Original Shared Link

and they only looked at vitous atrophy.

And, we know that in about 20% of villous atrophy the blood tests will be negative.

In patchy celiac, the blood tests will be even less postitive than in total atrophy.

Many will only have the patchy variant.

And , I read in the british meddical journal that in 30% of celiacs they are over-weight, literally obese, especially if the celiac only is patchy. teh body seems to over-compensate in patchy celiac and grab as much as possible out of the food and you get fat, even though you are malnourished....different things are absorbed by differnt parts of the small intestines, and you are dficient in those things even though you put on weight.

Thie diagnosis of celiac is almost medieval, by some blood tests which may be positive or not, and random biopsies that are done just at the beginningof the small intestine and are hit and miss.

nora

[Mattie's mom]

Thank you, Nora, for posting the link to that pubmed article.

I'm educating my son about the potential of developing diabetes, etc., in the future. He's listening. Still he chooses for now to wait on his older sister's biopsy results, assuming her new GI doc orders a biopsy. Also appealed to his teenage vanity: "You'll probably gain some weight and be able to build some muscle mass finally, when you're ready to go gluten free again." That was effective.

Will keep you posted.

[Mattie's mom]

We decided against the Enterolab testing. But everyone -- five people in two separate households -- is off gluten anyway.

Though son's 2nd celiac panel, after 8 weeks on gluten, also came back negative, his older sister's celiac is now biopsy-confirmed. Both are committed to staying gluten free and are helping each other navigate the diet.

THANK YOU all for your guidance and support!