Waiting On Test Results (for Celiac)

[Melissa394]

My son will be 6 on 10/23 and is 42" tall and ~33 pounds (I am only 4' 9" and 85 lbs and Dad is 5' 11" and 170 lbs . He was hospitalized last Saturday for vomiting/diarrhea that has been intermitten since late August. For three weekends in a row (always on Friday), he would vomit. It always started with a very large amount of poop (like one big glob, light colored, oily in appearance, floated and filled the bowl). After that, he would vomit a few times. Sometimes he would have a slight low grade fever. Following the vomit, would be watery diarrhea that was slimy/mucousy and he couldn't control it (accidents). Usually there would be only 2 accidents. The following day, he would eat like crazy and start feeling better until Friday.

He was released from the hospital on Tuesday and they did numerous tests on him; parasites, CT scan, abdominal X-ray, and lots of blood work and urine tests.

The day he was hospitalized, he had a very high white blood cell count (22k) and was dehydrated. After zofran, he felt great and they let him eat after his CT scan came back normal. He ate pretzels, animal crackers, and a few grapes. Within 20 minutes, diarrhea. Within 40 minutes extreme abdominal pain kicked in- he was screaming at the top of his lungs and kicking his legs. They gave him morphine and that's when they did the abdominal x-ray (was normal). They do not know what caused that pain.

He's being treated by a pediatric gastro doc who is rated as one of the best in the country. He told us Monday evening (after examining him, reviewing his blood work, etc) he's 99% leaning towards Celiac. That test result isn't in yet and we see him on Wednesday.

It's Saturday afternoon and so far, my son is going great. His belly is a bit distended still, but he's eating well and not complaining. He's pooped 3 times today and all are dark/normal and formed. They gave us no dietary restrictions but I chose to keep him off of dairy (he's drinking Lactaid and having soy products).

Lastly, they did give him parasite meds just in case and he finished those on Wednesday.

He is doing better and went from 31 pounds to 34.5 (today's weight). Could lactose intolerance be the real cause of this? Could pretzels, animal crackers, etc cause extreme abdominal pain in a celiac patient?

He keeps telling me that he has "water come in his mouth that is sometimes hard to swallow" and he said "I've had this since I was 4", meaning it's going on for a while. He's not saying it's bad tasting. Is this another sign of Celiac?

As you can imagine, I'm a nervous Mom wanting answers. I don't want my already tiny boy to get sick again; I certainly don't want him to experience the pain he had at the hospital.

Any input would be helpful!

[ShayFL]

Yes his symptoms could be Celiac. And MANY celiacs also cannot tolerate dairy. This is common.

Did they do a complete Celiac blood panel on him? Are they going to do an endoscopy to Dx Celiac?

You wont know anything until you get these tests done.

Wondering if Friday is "pizza night" or anything like that? Why so sick after Friday?

Hope you get answers soon and he can start getting better.

[Melissa394]

Hi Shay!

The first weekend this hit us (with vomiting and diarrhea), we thought it was viral. I slowly introduced dairy back into his diet (on Wednesday). The following weekend, same thing. I slowly brought it back but didn't give him milk until Friday. That's the real difference I think.

I believe they did a Celiac panel on him. If it comes back positive, an endoscopy will be done. We have an appt w/ the ped gastro doc on Wednesday for follow up.

What's strange to me is how this comes on so suddenly? Is this common for people with celiac?

[ShayFL]

It can be. The reason the dairy is such a problem could be because it is the very tips of the villi that digest milk/casein. So if the damage has only progressed to that upper tip, this is why the reaction to milk. Hopefully he doesnt have completely flattened villi. He will heal a lot faster once gluten-free.

Keep him on gluten until all tests are done.

[snowgirl]

Just another thought - you might want to look at Food Protein Induced Enterocolitis (FPIES). The elevated WBC made me think of it. My son has FPIES to milk and soy - he has extreme vomiting , followed by diarrhea (I'm not sure about yours having the reverse - I think vomiting is usually first). He has to go to ER and have IV with steroids - it can lead to severe dehydration. Very few drs know about it and even with our letter from the allergist explaining it, the ER drs don't want to consider allergy. The WBC's get very elevated and I know many kids who have not be diagnosed go thru all kinds of testing because of that.

Try googling it, or the KFA website has a lot of info on it.

Sarah

[Melissa394]

Thanks Sarah, I'll look into that also.

His symptoms are returning (I created another post).

His diet hasn't changed except I took out dairy/milk products. Not being strict about it; just elimated milk, yogurt, ice cream, butter. He's been on Lactaid since Monday and tolerated it well.

Last night, after his dinner he wanted toast. He ate two slices of wheat toast. I wonder if that has triggered this to return again? Flour products haven't bothered him in the past week; he's eaten chicken nuggets, steak fingers, and even cup cakes with no problems. Wouldn't a celiac patient get a tummy ache from eating that type of stuff?

I want answers and I want my son's health to return.

[ShayFL]

I never got tummy aches. Just neuro symptoms and loose poop.

[Lynnjk]

Hi all!

I've been reading what you all have said, and my daughter suddenly about a month ago started complaining about stomach aches daily. No vomiting or diarrhea but she said she felt like she was going to vomit. We took off gluten for about 4 days and the aches cleared up, then we were thinking, nah, that's not it and she went back on gluten for three days (pizza, mac and cheese, etc.) and by that weekend, she was doubled over.

I read that you're supposed to stay on gluten, but the blood test we did was after she had been off for a week or so. Could that cause it to be negative? Cause the blood panel came back all negative for celiac.

Our dr referred us to a ped GI but since that time she's been off wheat and doesn't want to go back on because we both think that's the problem. Should we keep a small amount going in and manage the pain (small pain with small input) until we get all the tests done?

Does this come on so suddenly at 8 years of age? Why?

Thanks so much for all your wisdom...

Lynn

[sbj]

Hi Lynn:

Generally, being gluten-free for only one week shouldn't throw the celiac panel off. So your daughter probably does not have celiac disease. That doesn't mean that she might not be gluten intolerant or have a wheat allergy, though.

Did the celiac panel show elevated IgG level? That would be an indicator that her body is reacting to gluten (but NOT an auto-immune reaction like in celiac).

What made you decide to try going gluten-free in the first place? Why did you start there and not with something a bit easier or more common?

When you went back on gluten (pizza, mac and cheese) it sounds like she was eating a lot of dairy. Perhaps she has a problem digesting dairy? It's very common.

It's up to you and your daughter as to what to do. Personally, I wouldn't want to give up gluten products unless I absolutely had to. I would want to know if I was gluten intolerant or had a wheat allergy. Others think that it's actually healthier for you even if you aren't gluten intolerant. If your daughter feels bad and not eating gluten prods helps her to feel better then it's your decision. There are nutritional implications for a wheat free diet - you have to work harder to get your whole grains and vitamins. And there are social implications as well. I don't think it's a decision to be entered into lightly or without full information. I think she should stay on gluten (if she can - one or two pieces of bread per day should do it). But I would NEVER advise someone to put up with pain. I think you both should see the gastroenterologist and perhaps an allergist. You might want to try an elimination diet that starts by eliminating one of the more common food allergies - like dairy.

[Lynnjk]

What made me think wheat is that my son is autistic and we went Gluten-free Casein-free when he was 3 for about 8 months. I also have a number of friends with celiac--one has a daughter that is both celiac and diabetic. I will certainly consider all you've suggested. She has been drinking milk and eating lots of cheese during this time, so I'm less inclined to dairy as a source. My son has a raging dairy intolerance that seems to be offset by the use of digestive enzymes. Brought him out of that major disconnect that is typically autism...

The blood work didn't show elevated anything as best I can tell, or at least that's what her pediatician said. But he was also concerned that the pains she was experiencing ceased when we pulled the wheat out. Since then she is subsisting on cheese and meats and fruit and milk. And gluten-free type breads. But I'm not looking forward to this future, and am hoping we find something else.

I'm going to try to reintroduce it before we go to the other doctor and let her try it out on a regular basis. Thanks for giving me some insight.

Lynn

[Lynnjk]

I forgot to add that her blood tests did not show any major allergy reactions. Very low end of the positive scale for a few things...but not wheat or dairy...one for peanuts, and I don' t remember the rest.

Lynn