Please Help Me, I Don't Know What To Do!

[snomnky]

Here is the deal, my son is 12 mo old and has been off gluten since he was 6 mo old. He originaly went off because he was vomitting, had horrible sleep disterbances, bad reflux, and he always seemed to have a tummy ache. Well here is the problem, at his 1 year check up the doctor did a test for celiac to see if he needed to stay off gluten, it came back negative, but possibly falsely since you must be eating gluten to get a proper result. We took the doc's advice before we did any research, and put him on gluten. within a week he was vomiting, not sleeping, looked as though he was bloated, irratable, rashy, his poop turned white and smelled like vomit, and he was loosing weight. We immediatly took him off and contacted the doc, who in turn ran a liver panell which came back high.

So, now the doc is saying that there is never any effects on the liver when you have celiac and has told us he thinks it is a just a coincidenc even though, one week after no gluten he is already improving.

Has anyone else had abnormal liver enzymes, or similar symptoms?

I just don't know what to do, we have appts set up with the gi, but she is the one that told his doc celiac will never effect the liver, i have been online for about 45 min and have found numerous articles linking celiac and liver disease!

Please help if you can, i need some support, Thanks

[2kids4me]

Elevated liver enzymes are associated iwth celiaic disease. I will find the link and add to this post as soon as I can. Then you can show the doctor. After gluten-free diet - the enzymes usually return to normal.

I apologize as this article is very "medical" and many terms may be foreign to you. BUT it wil be in the terms your doctor understands. plus it is recognized journal in the medical world.

A number of hepatobiliary and pancreatic disorders occur in celiac disease, a genetically-based small intestinal disorder that resolves with the complete restriction of dietary gluten[1]. Almost 3 decades ago, liver changes in celiac disease were first recognized by Hagander et al[2]. Later, Dickey et al[3] have confirmed these findings in a prospective evaluation of celiac disease patients and extended observations to results of gluten-free diet therapy. In some, these liver test changes are entirely reversible following administration of a gluten-free diet, while in others, clinically significant liver disease is not amenable to diet treatment alone[3]. Now, almost a decade after this report, recognition of celiac disease has been substantively improved, in part, a result of more modern serological assays for screening[4], the detection of tissue transglutaminase (tTG) as an autoantigen in celiac disease[5] and the increasingly widespread serological use of tTG ELISA to screen for celiac disease[6]. As a result of improved recognition of celiac disease, even more precise estimates of the overall disease burden related to hepatobiliary tract and pancreatic disorders will emerge.

In patients with unexplained elevations of liver enzymes, several studies using serological screening methods have estimated that almost 10% will prove to have celiac disease[7,8]. For example, Volta et al[7] examined endomysial and gliadin antibodies in 55 patients with elevations of liver chemistry tests in the absence of a known cause. Five patients had positive serological studies and small intestinal biopsies showed changes of celiac disease that responded to a gluten-free diet. Liver biopsies done in some patients showed a nonspecific inflammatory process and liver chemistry tests normalized with a gluten-free diet. Bardella et al[8] screened 140 patients with chronically elevated transaminase values for gliadin and endomysial antibodies; of these, 13 were sero-positive. After 1 year on a gluten-free diet, 12 patients had normalization of liver enzyme tests.

from: Open Original Shared Link

ISSN 1007-9327 CN 14-1219/R World J Gastroenterol 2006 March 14;12(10):1503-1508

Hepatobiliary and pancreatic disorders in celiac disease

[AndreaB]

I had elevated AST and ALT enzymes which after testing for everything was chalked up to fatty liver. One year later (2 months before birth of last child), they were normal again. I don't know if the pregnancy had anything to do with it because I had never even heard of celiac disease or gluten intolerance before. I have since gone gluten free (see sig). Stay gluten free, take the info about celiac and liver disease in to the doctor and find out how often he wants you to come bring your son back in for followup blood work. I was told after a year but it may be different with a young child.

[lorka150]

my liver enzymes were elevated above 800 and i was hospitalized. they eventually teetered to about 200 for four months, and then they did a liver biopsy. they are now returned to normal. no one knows 'why'. my internist said as long as the tests were fine, it was okay (when they were about 200). i am just awaiting one more result from the biopsy. is there any wilson's disease in your family?

[lovegrov]

Yes, celiac can have an effect on liver enzymes, but that doesn't necessarily mean any permanent liver damage. But celiac tests are also not reliable in any child under 18-24 months, so the celiac tests on your child really mean nothing.

All that said, you've seen your child get better going gluten-free, so you should stick with it.

richard

[Guest Robbin]

Hi, I have had a lot of problems before going gluten-free with elevated liver enzymes too. I was told "fatty liver" disease too, but it disappeared after going gluten-free. There are a couple of threads relating to this on this forum. I would keep him gluten free and the heck with the "experts". You know your child and trust your mother instincts. These doctors tick me off sooooo much. Especially when they think they know you or your child better than yourself. Take care and keep us posted on your little one's progress.

[snomnky]

thank you so much for the advice, this has been so frustrating! We have an appointment with a pediatric GI on Tuesday and my son's pediatrician has been speeking to her and will be faxing all his blood work, so i hope something comes of this visit. I am sure i will have many more questions once we see this doc.

Thank, you comments are much appriciated!