What Tests To Request (demand?)

[Terri-Anne]

Hi Everyone.

Let me give you a tiny background on our situation.

My son (almost seven years old) began having reactions to wheat as soon as it was introduced to his diet at about 9 months old. He had a severely itchy rash that he scratched until he bled and continued scratching, loose very smelly stool, stomach pains that would leave him writhing on the floor and crying, and he could somehow detect wheat content by merely licking a food item. (It must have "burned" his tongue?) After much trial and error, we determined wheat was the problem and did our best to remove ALL traces of wheat from his diet. About 4 months after removing the majority of wheat from his diet (we were still learning what that included and made mistakes here and there) he was tested with blood tests for celiac which came back negative. However I knew he still had very real, violent reactions from wheat ingestion, so assumed it must be a histamine type allergy as opposed to celiac. He remained wheat free until he was 5 1/2 years old. At this time, Allergist did RAST blood test for wheat as well as 2 scratch tests on different dates, all came out negative. So we did a wheat challenge in allergist office, by feeding my son bread. I fully expected him to writhe around on floor crying in agony, soon to have to run to bathroom with diarrhea, and to be almost immediately covered in the itchy red red rash. Surprise, surprise, absolutely NONE of his typical symptoms showed up. NOTHING.

So, Shocked, we took him home and put him back on a regular diet. Fast forward to about 6 1/2 years old. Logan has small breakfast, I pack him a sandwich, and about 5 snacks in his lunch for school. He gets home from school and either has a snack with permission, or raids the fridge/pantry for whatever he can get his hands on........he needs to eat. Supper, he eats a decent portion, easily as much as his 8 year old sister, often as much as myself, sometimes even more! ( I often try to fill him up with loads of mashed potatoes!) About an hour after supper (ie 7 pm ish) he asks for a sandwich. I generally let him have one. As I am ushering him up to bed at 8pm, he begs for something to eat, anything! I usually give in and give him another peanut butter sandwich. In addition to all of this food we often snack on potatoe chips or ice-cream in the evenings.

One would expect him to be on the chunky side, a little fat, over weight. But it's the exact opposite. He is tall for his age, but he doesn't have an ounce of extra fat on him. He still looks healthy, but when he sits on the floor and plays with his dinky cars I can see his spine through his tee shirt. He doesn't have a big bloated stomach.

He doesn't typically have diarrhea anymore, that I am aware of, but he has had about 3 significant episodes of constipation since going back onto wheat.

When he was wheat-free, if he accidentally ingested even a trace of wheat, ie contaminated peanutbutter or something, he would get that hollow-leg hunger, where he could eat and eat and not be satisfied.

I can't help but wonder if this huge appetite he now has is related to eating wheat on a regular basis. Do you think it could be? Do you think it might be someting else? like diabetes? thyroid? I dunno?

I am tempted to have him re-tested for celiac, but know from experience that our doctors are completely clueless about celiac. I need you to tell me EXACTLY what tests to tell my doctor to order, and EXACTLY what results would indicate "normal" and what would indicate "celiac."

If anyone has any other ideas/suggestions, I am more than happy to hear them. Please add your input!

[Guhlia]

I don't know about conventional testing, but it certainly sounds as though he has a problem with wheat or gluten. If your doctor is really ignorant on the subject and you don't want to switch doctors you could try Enterolab at www.enterolab.com. Many people on this message board have been diagnosed via Enterolab. It's pricey and your insurance company likely won't cover it, but it would bypass the ignorant doctor and you'd get some answers. It's also supposedly much more sensitive than traditional testing. It tests for Celiac and/or gluten intolerance rather than only testing for Celiac Disease. This can be very useful as there are many non-Celiacs who have severe issues with gluten. Also, if you go the route of Enterolab there's no need to report his illness to your insurance company which could save him a lot of trouble down the road. There are many who have been denied health and/or life insurance due to Celiac Disease.

[Ursa Major]

Terri-Anne, when I look at what you say about your kids in your signature, I see four kids with symptoms of celiac disease. I think you would do well to have ALL of them tested. And to have yourself and your husband tested as well.

The reason your son's tests came back negative when he was initially tested was probably because he was off wheat for four months before testing, which would result in a false negative, as it would give his intestines enough time to heal.

Being always hungry and constantly eating is probably because his villi are flat, and his intestines aren't taking up the nutrients. So, he has to constantly eat more, to get some nutrition. He may actually be malnourished, despite eating all the time.

I suggest having him tested with the whole celiac disease panel (I am sure somebody else can tell you exactly what those tests are), as well as levels of essential vitamins and minerals, like vitamin D, iron, calcium, vitamin B12.

The wheat allergy tests probably came back negative, because celiac disease is not an allergy. Most celiacs don't test allergic to wheat.

[LisaJ]

Hi Terri-Anne,

This may vary depending on what lab your doctor orders your testing from, but these are the tests that are included in a Celiac Disease Panel in the lab I work at:

Tissue Transglutaminase Antibody IgA and IgG

Gliadin Antibody IgA

Total IgA

Good Luck - Hope you find some answers.

[Terri-Anne]

Thank you for your responses so far.

The one thing that really puzzles me about Logan is that the main real symptom that remains is this crazy-insatiable-hunger. He does pass considerable pungent-smelling gas after supper most nights but that's pretty minor to put up with. What happened to all that roll-on-the-floor tummy pain? The diarrhea? The head-to-toe rash? He is back on a regular diet, FULL of wheat. How can those mentioned symptoms have all disappeared, IF this is celiac?

[Guhlia]

Some Celiacs never have any symptoms. Your son is in the typical "latent" age period in which symptoms are reduced or go away completely. However, if he has Celiac Disease he is still damaging his intestines by eating gluten, possibly causing irrepareable damage. My symptoms change from month to month when I get glutened. Many times my reactions are completely different than the time before. So, to me, it makes perfect sense that he wouldn't maintain the same symptoms as he did when he was a toddler. Insatiable hunger is a very common symptom of Celiac. It's caused by malabsorption and thus malnutrition. If he's insanely hunger it's likely that his intestines are damaged.

[chrissy]

hi terri-anne, it is possible that your son could have had a wheat allergy when he was very young and then outgrew it----but i tend to agree with ursula that all 4 of your children could warrant testing for celiac disease. their list of combined symptoms, plus the severe reaction your son had when he was little look a little suspicious.

our ped gi runs a total IgA serum test and a Ttg antibody test.