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High Alt And Ast Even After Gluten Free For 6 Months

NodakMom

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NodakMom Newbie
NodakMom
Posted

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. 

  • 2 weeks later...
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Dr. Vikki Petersen D.C, C.C.N Contributor
Dr. Vikki Petersen D.C, C.C.N
Posted

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

weluvgators Explorer
weluvgators
Posted

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!

dilettantesteph Collaborator
dilettantesteph
Posted

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.

NodakMom Newbie
NodakMom
Posted
  • Author

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?

mushroom Proficient
mushroom
Posted

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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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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