Osprey101

I finally found some relevant work:

"Is a life-long gluten-free diet for patients with celiac disease successful?" from 2005, and "Compliance of adolescents with coeliac disease with a gluten free diet" in Gut from 1991.

Each of these papers (the first one of which is largely an opinion piece) has references that are pertinent, and I can make do from there. Thanks, all!

I have a really stupid question, and I was hoping someone here might be able to help me find the answer.

I have been searching for references indicating the gluten-free diet is safe and effective. I'm not challenging the concept that it is- I am simply looking for stuff in peer-reviewed, refereed literature indicating that someone has studied a group of celiacs on a gluten-free diet versus a control diet, and ascertained the degree of success one has after eliminating the gluten.

For two days, I've been up and down PubMed with different search terms, and haven't gotten anywhere. All I'm looking for is a study showing that the gluten-free diet is safe and/or effective with celiacs. Any help would be appreciated. Thanks!

For me, the biggest symptom was the Big D. After suffering two months, my PA suggested it was either IBD or celiac- which was a red flag, as I have close relatives with it. After three days, things improved- then got worse for two days. Then two good days, one bad day, and about a week of very good days. After the first week or two, the mouth pain I was experiencing- not aphthous ulcers, but something very similar- went away, as did the thin, papery texture to the mucosal lining of my mouth.

Energy returned after about the first week, but as I noted- I was only sick for two months, which has to be some kind of record when it comes to celiac diagnosis.

Try sublingual B12, and you might load up on B vitamins in general. I'm not sure, but I think it's the water-soluble vitamins that are depleted preferentially; it'll still be tough for your system to absorb them until the villi heal, but a little more can't hurt. Not so much the fat-soluble vitamins, as it's easier to be harmed by consuming too much of them.

Your GI sounds like an idiot.

Amen to that!

After enough time without wg in your diet, your labs will show a reduced antibody response. One lab says they'll still show up even after 1-2 weeks of dietary exclusion, but why guess? If the biopsy shows the villi were damaged, that's a good reason to believe a celiac diet is good for you.

Really the "gold standard" test is dietary exclusion. If you cut out the wg and you get better- followed by a challenge in which re-introduction of wg in which symptoms reappear- that's a very, very good sign that wg is something that doesn't agree with you, and does not belong in your diet.

Good luck!

Imm. A - 301 (normal range)

IgA - 1 (normal 0-4)

Ads IgG - 7 (normal 0-9)

Endomysial Antibodies - negative

Antinuclear antibodies direct 40 (normal 0-99)

Immunoglobulin M - 285 (normal 40-230)

Sed rate - 30 (normal 0-20)

I remember reading somewhere that if you are IgA deficient, you are more likely to get a negative blood test even if you have Celiac. What does IgA deficient mean?

I think I'm going to try a gluten free diet anyway, because we're trying it with my son per his pediatrician. I'm just interested in what the high Imm M and Sed rate might mean.

Thanks!

Sed rate (sedimentation rate) is the rate at which red blood cells fall in uncoagulated (non-clotted) blood in a clean glass tube. An elevated rate means inflammation- but it does not give a cause. It is a simple test that can be used with other, more powerful tests; an elevated sed rate on its own is not useful.

IgM is a bit more complicated. From Wikipedia:

"IgM antibodies appear early in the course of an infection and usually do not reappear after further exposure. IgM antibodies do not pass across the human placenta.

These two biological properties of IgM make it useful in the diagnosis of infectious diseases. Demonstrating IgM antibodies in a patient's serum indicates recent infection, or in a neonate's serum indicates intrauterine infection (e.g. congenital rubella)."

IgA (immunoglobulin A) deficiency is just that- a reduced antibody. There's a lot more on IgA and IgG here (if you can wade through it):

Open Original Shared Link

Try the diet. Be meticulous in your exclusion of wheat gluten. Canned foods (beans and franks), food specifically labeled as "wheat gluten free," fish, and so forth. Don't eat out if you can avoid it. They can test you and test you and test you until your wallet is empty, but the ultimate test is dietary exclusion, followed by a challenge- but that'll be 6-8 weeks later, if all goes well.

Good luck!

So, we have 5 children...do we get they all tested??? I have one 6yo who is really hyper and can't sit still......makes me wonder!

Julie

Good for you on the labs. Maybe they changed tests and forgot to change the reference ranges- but that never should have happened.

As a practical matter (one which will help keep YOU sane!), try ditching the gluten and see how the entire family responds. It will be easier to prepare meals, there will be less concern with respect to kitchen hygiene, and there's one big problem about testing that lots of doctors seem to forget when it comes to celiac: they should treat the patient, not the labs.

Negative antibody test, negative biopsy- none of it matters if the patient improves in the absence of wheat gluten! If wg is reintroduced into the diet (accidentally or intentionally) and the symptoms recur, then the problem is wheat or wheat gluten.

You'd also have to check and see if he was intending on performing an antibody test, or a DNA test. Just "blood test" is a little vague; he almost certainly means antibody, but he could mean he wants to check for the gene.

I'm a biochemist with a background in medicine (vaccines, actually- nothing to do with celiac), and after two months of exquisite discomfort, I finally saw a PA (I couldn't see a GI for over a month). After two rounds of tests, she narrowed it down to IBD or celiac. A light came on, as my aunt had told me she had celiac- as did her daughter, and one of her granddaughters. I immediately cut out wheat gluten, and had the blood test. (Supposedly the blood tests are good if you've been off WG for a week or two- the antigens are still there.)

The blood test was negative, and the next step was a biopsy. I figured- if the biopsy was positive, they're going to tell me to go off WG. If the biopsy was negative, they're STILL going to tell me to go off WG.

If it looks like a duck, quacks like a duck, and swims like a duck- get the WG out of the diet, and keep it out. And the first time a crouton makes it into a salad and into the mouth, you'll know about it in 24 hours.

You can test, test, re-test, and test once more just to be sure- but if the wheat gluten is the problem, the solution is straightforward: knock out the wheat gluten!