I Need Thoughts From You Mommies!

[BonnieCR]

I'm trying to decide whether I should do a test run on a glutten free diet for my 22 month old. I've never even considered Celiacs with him but a friend keeps bringing it up so I am now wondering what else I have to lose by trying the diet with him.

Mason has reflux pretty bad. He isn't the typical reflux kid. He has siletn reflux so instead of vomitting, he swallows it back down. And where as most kids develop oral aversions, he went the opposite route and is a comfort eater. As such, he is a pretty big kiddo. As an infant he was in extreme pain for quite a while as the pediatrician kept blowing me off as on over anxious mother. I guess he just figured I was lying when I told him Mason never stopped screaming except to eat and never slept more than an hour at a time (he averaged about 7 hours total in a 24 hour period as a newborn). When he finally ran an upper GI on Mason it confirmed that he did have a nasty case of reflux. At that point, I switch peds and got referred to a GI.

Mason has been well controlled on Prevacid. He still refluxes all day long, but it is painfree. Mason also suffers from chronic constipation. The only time he has not been constipated was on regular formula as a baby. When we tried the hypoallergenic formulas, he was constipated, and when we started solids he was constipated and has been so ever since. (Sorry I realise this is long).

The GI felt positive the reflux would resolve once Mason started walking, which it has not let up in the slightest. She said that at age 2 we would have to put him through more tests (he is 22 months now).

Mason has had an upper GI, a swallow study, a blood test at 16 months (which did not show celiacs), and a barium enema. He is terrified of doctors now and I am heartbroken at forcing him to do the tests she wants to do next (PH probe OFF meds and a scope). He has never had an allergy test.

I am guessing my child does not have celiacs. It didnt show up in the blood test (though I hear not too acurate) and he doesnt seem to have the signs. If anything, he has the opposite. He is a large boy and is constipated (though kept regular on Miralax). He does have the gassing and bloating though rpetty much all the time.

What do you think? I feel like a desperate mom grasping at straws so I don't have to put him through anymore tests. Is celiacs a possibility at all? Should I give a trial run of the diet?

Thanks!

[Guhlia]

Weight gain can definitely be a symptom of Celiac as can constipation. Reflux is also a VERY common symptom along with the gas and bloating. If he already tested negative through bloodwork I would definitely say to try the diet OR you could try testing through Enterolab. The diet isn't as bad as you may think and he definitely has symptoms that point toward Celiac. It won't hurt him to try the diet, but it may hurt him if you don't and he does in fact have Celiac. Good luck and I hope you find some answers.

[Joni63]

Hi Bonnie,

I was diagnosed as an adult, but wanted to tell you my main symptom was constipation. I was slightly overweight, hungry all the time and had gas, bloating and fatigue. Yes, the symptoms he has can definately be celiac.

Just as you said, what do you have to lose from trying the diet? It surely can't hurt anything and you are able to stop it at any time. I think it's best to give it a few months though. Some people get acne and stomach pains the first couple weeks of going gluten free so if you do try it, please give it more than a month.

I've also read that the scope may not be real accurate at his age. Maybe some other's can chime in with more information about that.

Good luck, I hope you have success with whatever you decide.

[BonnieCR]

Thanks guys. I don't think she is scoping specfically for Celiacs but to check for damage from the reflux.

What is Enterolab?

Also, would the skin allergy test show up at all? I was thinking of actually calling her Monday to discuss that with her since he has never been tested for alelrgies. I would just like to do the least envasive tests first since he has been through so much. The barium enema was a few months ago and that was awful for him. He was compeltely hysterical the whole time.

[Fiddle-Faddle]

Skin allergy testing won't show celiac, because celiac is not an allergy. It is an autoimmune disfunction.

If you want the least invasive test, you should just try the diet. It also happens to be the most accurate test, but doctors don't like it because #1) they don't have control, you do, which is something most doctors hate and #2) they don't make a dime from your trying a diet (but they make thousands from endoscopies).

I'm not saying that there isn't a time and place for an endoscopy--but if you want the most accurate test and the least invasive test--they're one and the same, and it's trying the diet.

This is a great site--post your questions, and you will get TONS of answers! If you want, people will post all kinds of meal suggestions for your little guy so he won't even know that there is any change in his diet!

[Guhlia]

Enterolab is an independant lab that tests for gluten intolerance. Its pricey, but its also non-invasive and simple to do. Go to www.enterolab.com for more information.

[shan]

Is your son dairy free? I know i can sometimes go almost a month with out going if i eat dairy!!! Ouch I still eat it coz i love it, but i am dairy light - it is hard for you to do that to your kid, but it is easier in the long run than being gluten free!!!

[Yellow Rose]

I'm with Shan on the dairy free. Have you tried removing all dairy? We took our three yr old off all dairy and she is doing wonderful.

Yellow Rose

[debmom]

My daughter had all the same symptoms (plus extreme abdominal pain) you describe and most have resolved pretty well with the gluten free diet. I would not rule out celiac at all.

[Darn210]

My daughter's one and only symptom that sent us to the doctor was (and still is) acid reflux. Her reflux sounds similar to your son's - she spits up a mouthful and that's it. It got better but did not go away completely with Prevacid. The ped GI was positive it was going to be eosinophilic esophagitis which is an allergic reaction in the esophagus. It can cause reflux that is better but not totally controlled with medication. It is confirmed with a biopsy during an endoscopy. The next step after a positive biopsy is allergy testing. The reaction can be to food or environmental triggers. My ped GI said that approx 30% of the time, they can't figure out the allergy (doesn't show up during allergy testing).

The GI also screened and biopsied her for Celiac when he was doing the endoscopy (since he was in the neighborhood) and we were all surprised (including doc) when she came back with a positive diagnosis.

At that time, he decided to test her for Gastroparesis (slow stomach motility). She tested positive for this as well. That required erythromycin (sp?) in small doses before every meal for a couple of months. She was on Prevacid for reflux, erythromycin for gastroparesis and miralax (because she tends to be on the constipated side) for a couple of months. We had her weaned off of everything (one at a time over a couple of months) and then within a week of coming off of the Miralax, she started spitting up again. Now, she's back on Prevacid and an every other day (half) dose of Miralax.

Also, her 6 month follow-up blood test shows she/we are doing a fabulous job maintaining the gluten-free diet so I don't believe her reflux is related to celiac disease.

My daughter ended up testing negative to the eosinophilic esophagitis. GI doc said we may have gone looking for it too early (but not worth going back at this point to see if anything has changed). Also, the gastroparesis may not be totally resolved. Our next step is going in for allergy testing. She does appear to have steady nasal drainage most of which goes to her tummy so we are checking to see if all that mucus is causing her acid reflux. And just to point out - her nasal drainage is not obvious. She does not have a runny nose but both her pediatrician and GI have commented on the evidence (irritated throat) during examinations.

All that being said . . . I don't have any answers. Just wanted to share my experience to see if any of it sounds familiar or give you any ideas on what you might want to research or have a doc check out. Our allergy testing is this Friday. If we come up with any great insights after talking to the allergy doc, I'll let you know.