Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

High Alt And Ast Even After Gluten Free For 6 Months


NodakMom

Recommended Posts

NodakMom Newbie

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Dr. Vikki Petersen D.C, C.C.N Contributor

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

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

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

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

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.