Confused/doubtful About My Daughter's Celiac

[ultimattfrisbee]

In the spring of 2005, my daughter developed persistent problems with her digestive system--frequent morning nausea, occasional throwing up, and stomach pain. This started with a stomach virus that seemed to resolve itself quickly in what seemed like a normal manner, but then the symptoms returned. For about a month, we had trouble figuring it out. The symptoms, actually, were exactly what I was told indicated post-viral gastroparesis.

After some casting about, we took Maya to Children's Hospital's (we live in Pittsburgh) GI department, where she took the antibody test for celiac. This was positive, so an endoscopy was done and I was told that it showed "enough" flattened villi to make a celiac diagnosis. My sense was that she did not have a markedly smooth bowel, but that there was some flattening of the villi.

When I read stories other parents have told, here's the part where their children are put on gluten-free diets and the whole world turns around almost immediately. The symptoms disappear, the child starts thriving again, and all is well.

My daughter's story is a little different, and that's causing us some confusion. Happily, it isn't a tragic one. Unlike many parents of children diagnosed with Celiac, we did not suffer through terrifying years of acute symptoms, failure to grow, hospitalizations and even near-death traumas. Maya had always been extremely healthy and continues to be tall, big and strong for her age.

But her symptoms didn't immediately disappear. They lingered for a month, seemingly unaffected by the new diet. This was frustrating, but more frustrating was her doctors' seeming inability to process that information. It wasn't that they simply said, "well, sometimes it takes a while" (although from what I can tell, it usually doesn't); it was more like they had settled on Celiac as the cause of her previous problems and then seemed to edit her history in their minds so that the narrative fit celiac--gluten had clearly been the problem and she started feeling better pretty quickly on the gluten-free diet. The fact that we didn't see it that way didn't seem to have an impact.

Still, after a month, she did feel better, so we have stuck to the gluten-free diet, being as vigilant as we can in keeping her away from gluten, but this has not ended her GI troubles. They are, fortunately, periodic, not constant. They usually begin with what seems like a typical kids upset tummy, and then for a month or so afterward she has trouble with morning nausea (and sometimes nausea at other times of the day), and her stomach seems to be very connected to her emotions during these periods. This problem has shown up consistently in late summer, but I do not connect it to the start of school because this year, it was the last week before school that saw the problems fade away. Her nausea and stomach pain seems to be slightly eased by periactin at night, but with no consistency.

So, we've been left wondering whether Maya's occasional bouts of stomach trouble have been caused by exposure to gluten or if Maya's celiac is silent and the problem comes from some other source or, finally (and I know this will be met with very strong admonitions), whether Maya doesn't have celiac disease at all. My wife is a medical anthropologist and we have both seen western medicine declare something to be a fact for years, absolutely and with no equivocation, until something new comes to light. For instance, ulcers were caused by stomach acid until they were found to be caused by bacteria--I don't remember GIs saying "we just don't know what causes these things," but maybe they did. I'm not a doctor, but I have some skepticism about medical certainty and I hope no one will take offense at that. I'm not doctor-bashing here; I'm trying to help my kid.

Here's the latest chapter in the story: yesterday we accidentally gave Maya a cookie that had gluten. It was listed as wheat-free, but we were careless and didn't notice that it had barley flour. We were a bit distressed but also curious: this was the first time we knew without doubt that she had consumed gluten since she began the gluten-free diet, so we waited for symptoms. None appeared. Not yesterday, and not today now that she's up.

I know that this does not necessarily mean that Maya doesn't have celiac--I am aware that many cases of celiac are symptom-free, but is this diagnosis ever uncertain? Are there any other conditions that might cause some villi to flatten in the intestine besides celiac? It just seems to me that the way my daughter's problems have manifested themselves is not consistent with celiac and never has been, and there's still something wrong with her. I'm not panicked about it; it doesn't appear life-threatening, but it is unpleasant for her when these episodes arise, and I do not like the idea of having her on what might be an unnecessarily restrictive diet while her real problem is undiagnosed and untreated.

I would appreciate any advice and guidance I could get from people who know more about this than I do.

[confused]

She could have other food intolerances that are causing her to feel the way she is feeling besides gluten. Many of us are gluten and casein free. When i first gave up gluten i fetl somehwat better but after i gave up casein i felt wonderful, then i also figured out i was soy and garlic intolerant, it tooj me giving up all 4 of those to feel wonderful. Maybe your dtr needs to give up casein also and see how she feels, if giving up casein dont make her feel better then try soy.

Not everyone get symptoms right away from digesting gluten, some people it takes 3-4 days to feel the effects of glutening. Also gluten does not only cause GI sumptoms, it can cause so many other things like brain fog, mood swings, tingling in body and so forth. Just cause her stomach is not in pain does not mean the gluten did not effect her.

Are you also postiive she is not getting gluten from anything or anywhere else. How old is your dtr? Is the whole house gluten free?

Do you actually have the results of her blood test and an copy of her endoscope, that you could tell us exactly what it says.

paula

[gfgypsyqueen]

You are in a tough spot. I know I have heard of people who are diagnosed late in life on their first colonoscopy! No signs and no symptoms, but a full blown Celiac. I would say if the biopsy showed flattening of the villi, you have a celiac. She might be one of the lucky/unlucky ones who doesn't get classic symptoms for a reaction. I would see an allergist for a full food allergy test, I think it is a RAST. She may have something else causing the stomach issues.

I can say that both my daugther and I have the classic bowel problems for a first reaction to an obvious glutening. (I had a positive biopsy and her biopsy was inconclusive.) But both of us get mild reactions from sources that I can't always find. For me, skin sensitivity-as in don't touch anywhere and moods are my first signs that something is wrong. For my daugther the rash shows up. Maybe your daughter has stomach pain as her first sign of a mild glutening?

Good luck!

[Ursa Major]

From everything I have read, dairy and soy can also cause flattening of the villi. And it is true that gluten doesn't have to cause a gastrointestinal reaction. Some kids will have temper tantrums, get whiny, get 'growing pains' in their legs, or no obvious symptoms at all, while at the same time there is damage occurring in the intestines.

So, it would be a good idea to eliminate sources of dairy and soy as a first test, to see if it makes a difference. If it doesn't, keep looking. You are perfectly right that something other than gluten must be causing the ongoing problems.

On the other hand, are you sure that there is no cross-contamination going on? Is your daughter using a dedicated toaster? If she uses the same toaster as you for her gluten-free bread, she would get glutened. The same applies if you drain gluten-free pasta in the same strainer as regular pasta. Or cut her bread on the same wooden board as gluten bread, or stir her food with the same spoon as food containing gluten.

Also, have you replaced her personal care products (shampoo, conditioner, bubble bath, soap, lotion, toothpaste, chap stick etc.) with gluten-free ones, if the ones she used contained gluten (wheat germ oil. barley extract, oat bran)? Vitamins can also contain gluten, either as a filler or as an active ingredient (vitamin E can be derived from wheat germ oil).

Only after you have made absolutely sure that there is no way she is getting gluten from anywhere (which would obviously stop her from healing completely) can you say that just being gluten-free is not making her well.

[ultimattfrisbee]

All good suggestions. We do worry about cross-contamination, but have a dedicated toaster, plus designated jars of peanut butter, jelly, a separate butter dish, a different sponge in the sink for washing gluten-contaminated dishes. We do not have a dedicated cutting board--we use a lucite one that we keep washed, but maybe that's not good enough. We also don't have a dedicated strainer, but wash and dry the strainer if it's been used for something with gluten. Maybe, again, not enough.

I will explore the other allergies, though it seems to me odd that it would be a food allergen if it's so episodic. These events seem to happen for about 1 month after a stomach ailment, and then, for the most part, they disappear. I will certainly explore soy and milk, but am still a bit stumped.

Thanks for all the help.

From everything I have read, dairy and soy can also cause flattening of the villi. And it is true that gluten doesn't have to cause a gastrointestinal reaction. Some kids will have temper tantrums, get whiny, get 'growing pains' in their legs, or no obvious symptoms at all, while at the same time there is damage occurring in the intestines.

So, it would be a good idea to eliminate sources of dairy and soy as a first test, to see if it makes a difference. If it doesn't, keep looking. You are perfectly right that something other than gluten must be causing the ongoing problems.

On the other hand, are you sure that there is no cross-contamination going on? Is your daughter using a dedicated toaster? If she uses the same toaster as you for her gluten-free bread, she would get glutened. The same applies if you drain gluten-free pasta in the same strainer as regular pasta. Or cut her bread on the same wooden board as gluten bread, or stir her food with the same spoon as food containing gluten.

Also, have you replaced her personal care products (shampoo, conditioner, bubble bath, soap, lotion, toothpaste, chap stick etc.) with gluten-free ones, if the ones she used contained gluten (wheat germ oil. barley extract, oat bran)? Vitamins can also contain gluten, either as a filler or as an active ingredient (vitamin E can be derived from wheat germ oil).

Only after you have made absolutely sure that there is no way she is getting gluten from anywhere (which would obviously stop her from healing completely) can you say that just being gluten-free is not making her well.

[Ursa Major]

The strainer could be a problem. It isn't possible to clean a plastic strainer completely of gluten, as it is just too sticky (they make industrial strength glue from gluten - glue comes from gluten).

It sounds like you are doing everything else right.

Many people with celiac disease didn't get well until they eliminated dairy. Try it, you've got nothing to lose!

[Gemini]

The strainer could be a problem. It isn't possible to clean a plastic strainer completely of gluten, as it is just too sticky (they make industrial strength glue from gluten - glue comes from gluten).

It sounds like you are doing everything else right.

Many people with celiac disease didn't get well until they eliminated dairy. Try it, you've got nothing to lose!

I would bet her problem is dairy. Many celiacs cannot have dairy for awhile until healing occurs because lactose is broken down at the tip of the villi so if there has been damage, you cannot digest dairy just yet. This happened to me but I was able to reintroduce it after about 6 months and now I have no problems with it.

[kevieb]

the fact that you say these episodes happen for about a month after a stomach ailment helps to point to dairy. like others have said, celiacs can be lactose intolerant until their intestines heal. i believe that a gut ailment can also cause a temporary lactose intolerance-----i assume because the intestines can become inflamed------clear liquids are sometimes recommended for diahrreah (how do you spell that!!!???) the clear liquids give the gut a chance to heal before puttting dairy back into the diet. babies are put on pedialyte when they get this kind of illness.

a dairy problem can cause flattening of the villi----but if your daughter also had a positive celiac antibody test, i doubt there is any hope of a mistaken celiac diagnosis.

my girls were diagnosed by Ttg antibody tests---not by biopsies. there was a period of time when i was wondering if maybe the diagnosis could be wrong---maybe i was hoping it was wrong. the clincher for us, that took away all doubt, is that we do regular blood work every 6 months and their Ttg levels fall when they are gluten free and raise when they get gluten.

[Arpita]

Wow, that sounds tough, especially when the diet is so all-consuming. It can be real difficult when medical science is a ever-changing, incomplete science and when doctors so often filter everything through one statement or diagnosis. As for other ideas of a diagnosis: Parasites and milk intolerance can also cause flattened villi (search celiac.com and there is a list of other things). Another possibility is that she has celiac that does not respond to diet (called retractible or something like that). Some diseases frequently have false positives in bloodwork, but it is not typical for there to be a false positive for celiac. Also, sometimes celiacs have additional things such as Crohn's, parasites, bacterial or fungal infections