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It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

#FFL12 – Dr. Fasano. Onward.

“It doesn’t matter how I answer that question.  No one can really ever know, and you can’t go back.  You can only move forward.  She’s healthy and happy.  With proper attention to her diabetes, along with correct management of celiac, she can live a long, fulfilled life.  Nothing I say will ever take that away.”  Dr. Alessio Fasano

I nodded my head and looked down at my hands.  I tried to smile, but felt the familiar clutch in my chest, and swallowed hard to fight back tears.  Aside from one or two people, the room was almost empty now.  I looked up again, and thanked him for taking a few minutes to talk to me.  He smiled,  and I moved out of the way so the next person could have their turn.

When Celiac entered our world in 2008, I began searching high and low for as much information as I could find.  Along the way, I consistently came across the name of one prominent researcher:  Dr. Alessio Fasano.  For YEARS, I’ve kept up with the events happening inside the gluten-free (GF) community; and for years, I’ve valued his position on issues ranging from obtaining a confirmed Celiac diagnosis to using 20 ppm as the standard for a U.S. gluten-free labeling law.

So, when I learned that he would be presenting a session at the 2012 Children With Diabetes Friends For Life Conference, I could hardly contain my anticipation.  If I only had the opportunity to ask him one question, I already knew what it would be:

Had I known to eliminate gluten when she first began showing signs of celiac, could I have stopped the autoimmune process that ultimately led to the destruction of her pancreatic beta cells ?

And, while I wanted to hear a definitive yes or no, I’ve come to learn that nothing in life is ever definitive.  There are no do-overs.  You learn as you go, and do the best you can along the way. So, I suppose that, if a top-notch celiac researcher tells me not to look back, but instead to keep moving forward…then…ONWARD we must go!  He’s right.  The “yes or no” answer I keep seeking is of little relevance to the life we’re living.

His session was incredible.  I was completely absorbed by the information he was presenting, and couldn’t seem to take notes fast enough.  Here’s a list of a few things I remember:

  • First of all, I’m not exactly sure where or how I thought the immune system functioned, but I was stunned by the HUGE role the intestines play through a process commonly known as “leaky gut“.  When combined with an environmental trigger and genetic susceptibility, leaky gut sets the stage for a Celiac diagnosis.
  • Just published in March 2012, THIS study demonstrates that delaying gluten exposure until after 12 months of age can reduce the immune response to gluten. All of my girls were exclusively breastfed for the 1st six months of their lives, and introduced to solid foods in the form of pureed fruits and veggies after that.  Their first gluten exposure was in the form of pick-up cereals and “puffs”, along with teething biscuits around 7 months of age.  If I could go back (and I realize I can’t), I would NEVER have introduced gluten before the age of 12 months.  I wish I had known then what I know now.
  • Type 1 Diabetes and Celiac Disease share many genetic variants, while others are distinct — read more HERE.  Of note, I wanted to share this statement…

Our results support further evaluation of the hypothesis that cereal and gluten consumption might be an environmental factor in type 1 diabetes, leading to the alteration of the function of the gut immune system and its relationship with the pancreatic immune system.

Could that be the “yes or no” I’m looking for?  Onward.

  • Finally, something I found incredibly intriguing is that cesarean delivery is associated with Celiac Disease.  It has something to do with the initial bacteria introduced into the gut…operating rooms are sterile environments…you’ll have to read the rest, because I can’t explain it as well as the study itself.  Anyway, none of my girls were born via cesarean.

When asked if he, himself, avoids gluten, Dr. Fasano gave a little chuckle.  “I’m Italian. Avoiding gluten would be quite difficult to say the least!”  He responded that he eats gluten in moderation, and he believes it’s a good guideline for everyone to follow.  Isn’t that what we hear for everything?  “All things in moderation.”  For some reason, the idea of eating bagels for breakfast, sandwiches for lunch, pasta at dinner, and cookies or crackers for snacks in between seems “normal” in the American diet…but, the truth is, it’s too much!

There’s so much more!  If you EVER have an opportunity to hear Dr. Fasano, I would highly recommend his session!

In closing, I wanted to share that both Tink and Tiara had endoscopies three days after we returned from the conference.

They’ve both been symptomatic for awhile, so I requested some bloodwork from our pediatrician.  The labs were negative, with the exception that they’re both positive for the DQ8 genetic marker (which means they’re genetically pre-disposed to the risk of developing Celiac).

As I’ve explained before, Sugar’s celiac screenings were negative for YEARS, despite obvious symptoms.  With this in mind, we proceeded with a GI consult, who agreed that an endoscopy was an appropriate next step.

Last week, we got the call that both girl’s biopsies were negative for Celiac Disease. The recommendation by both our local GI doctor and Dr. Fasano (because I had a second chance to pick his brain at the conference!) is to have them tested again if their symptoms worsen.  Otherwise, they should be re-screened prior to puberty, because untreated Celiac during that critical time can lead to a host of problems.

And so, it brings us full circle to that “yes or no” question.

Do we eliminate gluten for both girls in hopes of preventing further autoimmune disorders, including another T1 diagnosis?  Or have the cards already been played since they were both introduced to gluten prior to 12 months of age, and they both have confirmed genetic susceptibility.

Do I impose a LIFELONG expensive dietary restriction without any evidence to support the reason?  Is that something they would really appreciate later in life?  Or, would it be an example of their mother making a reactive decision based on their older sister’s experience?

It’s hard to know what to do…if one/both of them were to ever develop T1, and we don’t eliminate gluten, the guilt would be overwhelming. At the same time, the idea of forcing a GF diet feels like it could potentially impose a lifelong burden. And what if we do eliminate gluten, but they decide not to continue being GF as an adult of their own free will…could that cause a worse autoimmune response later? So much still unknown.

This is when I choose to rest the burden and pray that God’s plan will be honored, no matter what. I will pray for an obvious answer, and keep pressing ONWARD in moderation for the time being.

Onward.  Thank you for sharing the journey.

  • Lora says:

    What a great answer. It was even more powerful re-reading it once I knew the question. I honestly don’t think they will ever pin down an exact cause to d. There are too many factors (ie one breastfed and the other didnt, this one ate organic and this one lived on ding dongs and McDonald’s). I tell myself all the time that it doesn’t matter, but way deep down, in that secret hiding spot, it kinda does. Even if the answer would just add more guilt… At least it probably would for me. Maybe it was all the fruit snacks I fed him?

    July 23, 2012 at 1:08 pm
  • Nikki of Our Diabetic Warrior says:

    Great post Wendy! I’ve often wondered myself if we would have caught Andrew’s celiac first, if diabetes would not have occurred. My daughter had an endoscopy last week too!!! She’s been having symptoms, but her scope turned out negative as well. Her blookwork was negative, but they decided to do the endoscopy because Andrew has celiac. They didn’t test for the genetic marker which I probably should ask for.

    It’s such a hard call on how to proceed. We struggle with the same decisions. Here’s to ONWARD!!!!

    July 23, 2012 at 2:33 pm
  • Krissy McMomma says:

    Reading your question, I also felt the familiar clutch in my chest and swelling of tears. How many times have we all asked ourselves the same question, just in different words…had I know to eliminate <>> would my child still have developed diabetes?

    After Ella was diagnosed, I drove myself nuts thinking maybe it was allowing her to pierce her ears or maybe it was that last round of vaccinations or maybe it was the tonsillitis or maybe it was the milk or maybe…maybe…maybe…

    And so I love his answer to this – thank you for sharing. Every day I recite the Serenity Prayer and try to accept the fact that I cannot change her diagnosis but I can change how we respond to it and whether or not we allow it to affect our lives in a positive or negative way.

    July 23, 2012 at 4:51 pm
  • Alexis Nicole says:

    Ok first I have leaky gut so hearing ait discussed at FFL made me smile.

    Second,..I so get this,

    I battle the decision of whether or not to have the boys go gluten free as well as I feel it’s not good for anyone really.

    I then wonder all the same things you are worried about. Same same mama…

    July 23, 2012 at 5:48 pm
  • Amanda says:

    My husband’s grandmother has Celiac’s and I am always on the lookout with our kids too, especially Kortnie. Everything seems like a gamble and can be so overwhelming. I think you’ve got it right though, trust in the Lord, keep praying, and keep re-evaluating and making the best decisions for our kids.

    July 23, 2012 at 6:07 pm
  • Kelly says:

    This is such a powerful post and answer for me as I find myself looking back often and wondering when, how, what did I do to cause and looking forward to when, how, what can I do to prevent but I know in my heart like Dr. Fasano that we can only look forward. I say to myself my car’s windshield is bigger than the rearview mirror for a reason…so we can spend the majority of this ride focusing on looking ahead. Keep living in the moment Rose family!

    July 23, 2012 at 6:25 pm
  • Emily B says:

    Hey Wendy, so relate.
    My younger son (no T1 or celiac diagnosis) is on a pretty-limited-gluten diet. At home we have very little gluten so that Camden doesn’t get exposed. The small amount that we do have is because financially I can’t afford for us all to eat Udi’s bread and Ethan likes the occasional granola bar. Outside of home, I have not changed his diet much.
    I have wondered about getting the genetic testing done. Is the only way through endoscopy?

    July 23, 2012 at 6:36 pm
    • Emily B says:

      p.s. he’s had the regular celiac panel done which came back negative, but nobody mentioned if he has a predisposition.

      July 23, 2012 at 6:39 pm
    • Wendy Rose says:

      Hey! The genetic screening is a blood test…both my girls were positive for DQ8.

      Taken from the Center for Celiac Research:

      What is the meaning of HLA DQ2/DQ8?

      As an autoimmune disease, CD is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop CD; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop CD, rather, that they have a genetic compatibility with CD. Conversely, the absence of DQ2/DQ8 almost certainly rules out CD.
      http://www.celiaccenter.org/faq.asp#hla

      July 24, 2012 at 2:01 am
  • Denise aka Mom of Bean says:

    Just have to move forward…so true and so powerful.

    July 23, 2012 at 8:31 pm
  • Moira says:

    BTW JDRF is now funding studies exploring the gut, leaky gut and how and if it impacts the onset of Type 1 diabetes

    July 24, 2012 at 1:24 am
  • Sara says:

    I have had stomach problems for years before I was diagnosed with diabetes. They have not been able to figure out the cause of the stomach stuff. The blood test was negative for celiac and they even did a CT scan to rule other stuff out. I wonder if it still is celiac and I am just tough to diagnose – like you and your daughter. Hmm…

    July 24, 2012 at 3:04 am
  • Misty says:

    This is so interesting and am still kicking myself for missing that session!
    I find myself wondering what if I had done this or that differently. Thank you for sharing Dr. Fasano’s words. ONWARD we go together!

    July 24, 2012 at 4:13 am
  • Sarah says:

    celiacs is very interesting to me, however, I can’t keep going over the “why’s” for Isaac’s dx. I know that he was predisposed with having a father with type 1, but honestly we did everything as we “should” – BF for soooo long, no food until he was old enough and certainly no gluten until after 12 months old, and he developed t1 at 19 months. These are the things I can not know for sure and I hope others let go of just a little bit, especially because someday all of our children will be grown ups hoping to have babes of their own and I hope they don’t fear having babes that develop t1d, I hope they know that it isn’t something we beat ourselves up over so much that they worry about it constantly, too. I hope I am not offending, I just know that so many people write off the stress and worry of a PWD carries about passing on the genetic link to developing t1d, I just don’t want anybody ever feeling bad for having children with diabetes, for any of it. It is what it is, now we need to go on…like the doc said, right 🙂 Thanks again for sharing this Wendy, I know that we are pretty certain that Isaac has gluten sensitivities if not allergies even with a negative result to bloodwork and are keeping an eye on everything, it is a tricky one to dx though for sure.

    July 24, 2012 at 7:40 am
    • Wendy Rose says:

      We don’t have any family history of T1, however we do have a longstanding family history of other autoimmune disorders — in particular MS and Rheumatoid Arthritis — both of which share the same gene that T1 and Celiac share. (Thyroid Disease also shares this gene, and Sugar tested positive for one of those antibodies for the first time last year.)

      After hearing Dr. Fasano’s lecture about leaky gut, I have a better understanding about how the removal of gluten can potentially prevent other autoimmune diseases from developing.

      And so, as a parent, I must ask myself if removing gluten from my non-affected children’s diet is an appropriate measure to take knowing full well the genetic predisposition they face. While I don’t beat myself up over Sugar’s T1 dx, I do believe gluten very well could have been the environmental trigger, especially when combined with her genetic pre-disposition.

      I have 2 other children with the same genetic risk. Do I remove gluten now, in hopes of reducing their risk of developing “something” later?

      If I knew all of this before I had babies, would I have still had them? Absolutely. I wouldn’t trade the blessing of being their mother for anything in the world.

      July 24, 2012 at 3:49 pm
  • Laura says:

    Thank you for this reminder. I really enjoyed reading about what Dr. Fasano has to say about developing Celiacs. My family has a history of a gluten intolerance but no one has been tested for anything relating to celiacs. My 3 year old was diagnosed with TD1 9 months ago and has tested negative for Celiacs but it was because I though she had a gluten intolerance that we even went to the doctor in the first place. I would like to read the study about not feeding gluten before 12 months since we just had a baby.

    July 24, 2012 at 12:26 pm
  • Laura says:

    I can’t seem to get the link to the study about feeding gluten before 12 months to work.

    July 24, 2012 at 3:07 pm
    • Wendy Rose says:

      Hi Laura…
      I’m sorry the link isn’t working for you!

      Here’s the URL to copy/paste:
      http://somvweb.som.umaryland.edu/absolutenm/articlefiles/1779-Microbiome%20infants%20at%20risk%20CD,%20PlosOne%202012.pdf

      If that doesn’t work, try to Google the title:

      Proof of Concept of Microbiome-Metabolome Analysis
      and Delayed Gluten Exposure on Celiac Disease
      Autoimmunity in Genetically At-Risk Infants

      You can find that publication, along with several others that may be quite interesting by visiting UofMD’s Center for Celiac Research website…

      http://www.celiaccenter.org/publications.asp

      There are some recently published gems in there!

      Hope of of these solutions work!

      When my daughter was dx at age 24 months in 2005, she had already had celiac symptoms for over a year. Her celiac blood tests were negative until the age of 5 yrs, despite obvious and worsening symptoms. Her routine annual diabetes labs included a celiac screening, and it was positive in 2008. I wasn’t surprised AT ALL, disappointed to know we’d have a second chronic disease to manage, but not surprised!

      July 24, 2012 at 3:20 pm
  • Anonymous says:

    Hi I find the study on not introducing wheat to babies under 12 months very interesting. I have twins that are 8 months old. I have Celiac disease and type 1 in my family. My twins do cereal and fruits and veggies. I still breasts feed in the morning. I wondered what kind of cereal you recommend. I have used Beechnut and Gerber and they contain wheat. Is there a glutean free baby cereal???

    August 14, 2012 at 3:51 pm

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