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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

High Alt And Ast Even After Gluten Free For 6 Months
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My 19 month old son was diagnosed with celiac in September 2012 at 13 months.  I nursed him until 16 months when he self-weaned (too busy chasing his big brothers.)  At the time of his diagnosis, his AST and ALT were quite high (in the 400s.)  We immediately went gluten free and his symptoms were better within 36 hours.  We thought, "Whew! Crisis averted, thank goodness we caught it so fast."  He's been happily gluten free since Sept 2012.  He has no real health issues since going gluten free, other than dry skin and mild rashes that a lot of celiacs experience even when off gluten.

 

Fast forward six months when we had his enzyme levels checked again this month.  His ALT and AST were worse, this time in the 500s.  The pediatric gastro had him tested for multiple things (Muscular Dystrophy, alpha 1 antitryptasin deficiency, Hepititis and even Lupus.)  Thus far, every thing has come back negative, except the HLA molecular test for Celiac and lymphoma. 

 

Has anyone on this board experienced a child's symptoms improving and yet had persistently high ALT and AST?  I'm concerned there is some underlying reason for the elevated enzymes; we're even considering taking him to Mayo. 

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Here’s my take on it:

1.      It’s great that most symptoms improved but one cannot ignore the skin issues. Why? Because the skin is a reflection of colon health and his continuing skin issues mean that his gut isn’t healed – yes, he likely has a leaky gut.

2.      What’s showing on the outside (his skin), is likely also being demonstrated on the inside (his liver). When a leaky gut persists, any autoimmune type reaction that occurred while the person was eating gluten can persist despite no gluten being ingested. Why? Because the immune system is on an ‘auto-destruct’, which is what autoimmune disease is.

3.      What needs to be done is to heal the gut and normalize the immune system. This child could have infections in his gut that are migrating out through the leaky gut into the bloodstream and affecting his liver. Or, the immune system could just be continuing the liver ‘auto-destruct’ message that is originally received from gluten, but is now continuing because the leaky gut continues.

4.      Another option is that the child is eating foods that are cross-reactive to gluten and that is continuing the autoimmune tendency. Finally, the child could also have a sensitivity to dairy products which is known to be highly anti-inflammatory.

 

I hope this makes sense. It frustrates me no end that the secondary effects of gluten are not addressed more routinely. It could definitely save patients from many chronic diseases.

 

To your good health,


Dr Vikki Petersen, DC, CCN

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Our middle child (of 3) was our family's canary. We have been gluten free for almost 7 years now, and it has been a long road for our family. We had a very difficult time understanding the severity of our gluten issues and have found the best guidance to come from those that are "Super Sensitive". We quickly realised that the severity of our middle child's condition required a gluten free home. We also have had to implement very strict protocols for care, school and those that enter our home after eating gluten.

We have worked with doctors that have tried to reduce our super sensitivity, but the most effective protocols for our family remain strict eliminations of gluten. I am happy to share more details of our story if you want.

You haven't mentioned the status of your home related to gluten, and I wonder if he continues to be contaminated from his environment. There is a rather recent posting related to gluten contamination and refractory celiac which may be interesting to you. I hope that you are able to figure out more information to help your son recover his health. We have had several complications related to our celiac and severe gluten hypersensitivity and have had to endure severe complications due to our lack of understanding of the effects of chronic gluten exposure that is outside the "normal" tolerance levels for a "standard" celiac. I wish you well in the journey and share that our family has had to deal with a lot of testing, investigation and interrogation for understanding the extent of our complications. I hope that you find relief and resolution quickly. I understand how exhausting and scary the rounds of investigation for complications can be. Big hugs from another celiac mama!

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I agree that it would be a good idea to look into the trace gluten issue.  That was our fate as well.  My son and I are both very sensitive to trace gluten.

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Our middle child (of 3) was our family's canary. We have been gluten free for almost 7 years now, and it has been a long road for our family. We had a very difficult time understanding the severity of our gluten issues and have found the best guidance to come from those that are "Super Sensitive". We quickly realised that the severity of our middle child's condition required a gluten free home. We also have had to implement very strict protocols for care, school and those that enter our home after eating gluten.

We have worked with doctors that have tried to reduce our super sensitivity, but the most effective protocols for our family remain strict eliminations of gluten. I am happy to share more details of our story if you want.

You haven't mentioned the status of your home related to gluten, and I wonder if he continues to be contaminated from his environment. There is a rather recent posting related to gluten contamination and refractory celiac which may be interesting to you. I hope that you are able to figure out more information to help your son recover his health. We have had several complications related to our celiac and severe gluten hypersensitivity and have had to endure severe complications due to our lack of understanding of the effects of chronic gluten exposure that is outside the "normal" tolerance levels for a "standard" celiac. I wish you well in the journey and share that our family has had to deal with a lot of testing, investigation and interrogation for understanding the extent of our complications. I hope that you find relief and resolution quickly. I understand how exhausting and scary the rounds of investigation for complications can be. Big hugs from another celiac mama!

We have three children, two are adopted and one is our biological child. Our biological child is the one with celiac.

Two weeks ago, his AST and ALT were retested and they were getting very close to normal. I knew the enzymes were getting better because his poop was starting to actually look normal. Two days ago he started having classic celiac symptoms again: diarrhea, white poop, bad rash, tummy ache. I'm sure if they tested his liver enzymes, they'd be high again.

I have noticed one thing, which is that he has celiac symptoms whenever they have corn for lunch at daycare, so we need to cut out corn. The other piece of this puzzle is that he was on an antibiotic for thirty days due to a chronic sinus infection. His celiac symptoms improved dramatically while on the antibiotic. Now, we are back with white poop, diarrhea, rash, etc.

Our house is separated into shelves and cupboards that are gluten-containing and gluten free. All our evening meals are gluten free, then I save the leftovers for our celiac child to take to daycare the next day. Breakfast is usually an Udi's muffin and banana.

We're frustrated, because the pediatric gastro sent us on our way after doing the testing and said, "I'm not even sure he has celiac." When I pushed back and said, "oh good, then I guess we can go back to eating gluten," he responded with, "I would keep him gluten free."

So, we have all these celiac symptoms, we have one doctor's diagnosis and instructions to keep him gluten free, but a boatload of more questions as to the recurring symptoms.

I think we will go ahead and take him to Mayo. Any one else take their child there?

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Just a thought ~~ don't know what antibiotic your wee guy was on but flucoxacillin is known to elevate liver function results.

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