Friday, November 4, 2011

A New Way Of Life

The one thing we can count on with Type 1 Diabetes is that things are ever changing.  Insulin to carb ratios... basal rates... all changing.  Always.

So, its somewhat surprising to me that the biggest change in our lives this past month is not related to diabetes.  It affects Sugar Boys diabetes (what doesn't??) but is not totally related to it.

For severl months I have suspected that Sweet Girl may have issues with processing gluten.  We have several friends, both inside and outside of the DOC that have gluten and wheat issues... some of them have Celiac, some just have allergies and sensitivity to gluten or wheat.  Because of what I have learned from these friends, I was identifying with some behaviors in Sweet Girl that had me worried.  If she had a lot of gluten rich foods throughout the day, by the end of the day she was bloated, gassy, crampy and often ended up in the bathroom with loose stools.  I wont go into all the details, but lets just say these poop sessions were not exactly normal.  So, I was convinced that she certainly had a gluten sensitivity if not Celiac.  We had a pediatrician appointment for both kids and their 5 year check up at the beginning of October.  Her pediatrician agreed with me... and that if not gluten, then some other food allergy was most likely the culprit.  She wrote up orders for blood work and promised that we would get to the bottom of it.... no pum intended.

The next week we had Sugar Boys endo appointment.  Knowing that he was also going to need his yearly blood work done, I held off taking Sweet Girl for hers, figuring we would just do them both at the same time.  We got into the little room, got settled and they did the finger stick and blood sample for his A1C.  I was nervous about it considering the completely uncontrollable numbers we had been having recently... both the lows and then the rebounding highs from those lows.  Doc came in and delivered the results... A1C was high.  Really  high.  Higher than its ever been.  It knocked the breath out of me and I felt frustrated and completely discouraged.  What else could I do.  I had been micromanaging the numbers but things were just NOT working the way there were supposed to.  I was blaming it on the honeymoon period.  That was why the numbers were just SO unpredictable, right??? Or was it just diabetes being hard to manage?  The doc hooked the pump up to his computer and downloaded all the info out of the pump and CGM.  He had all the info from the past 3 months, and he started going through it... page by page.... graph by graph.  Finally he asked if Sugar Boy ever complains of tummy aches.  I said yes, but that its usually when he is trying to talk me out of a snack, so I had dismissed them mostly as a ploy.  What he said next really caught me off guard.  He said... "I have to wonder if we may be dealing with Celiac here."

WHAT?  No!  Sweet Girl is the one we are concerned about for that... not Sugar Boy.  And please, God... not BOTH of them. 

But alas, the doctor explained that when someone has Celiac or even a gluten sensitivity that the food is not absorbed correctly.  That can cause lows and then rebounding highs when the food suddenly absorbs all at once.  That is exactly what we had been experiencing.  Finally, some answers to the incredibly wonky numbers.  Just not the answers I wanted.

So, we took them both for blood work.  That was pure hell, let me tell you.  it took Sugar Daddy holding Sweet Girl in his lap, a tech and myself holding her still and another to draw the blood.  In the meantime she was screaming bloody murder.  Sugar Boy did better, but we left there feeling like we had been through war. 

Sugar Daddy and I started researching.  As we were doing so, Sugar Daddy started noticing that some the signs and symptoms were very familiar.  He started wondering about himself.  He has always had what we just called a "sensitive stomach"... now we were wondering if it was more than that.  While waiting on the results we decided the whole family would go gluten free and see what happened.  I knew that from what I had heard it could take a couple of weeks and even months to see results from moving to a gluten free diet.  That was not the case with our family.  The change was instantaneous.  Within 3 days Sugar Boys numbers were the best they had been in months (if not close to a year) and Sweet Girl AND Sugar Daddy had no more "potty problems".  Gone.  Completely.  Since then Sugar Daddy has experimented with it a couple of times... eating gluten in the form of a hamburger bun or a dinner roll and the results have been indisputable... within an hour he has cramps and is running to the bathroom.  Sweet Girl had a snack cake the other night... one that was left in the pantry and had not yet been cleared out.  Within an hour she had tummy cramps and was curled in my lap.  She hadn't done that since before we went gluten free.  And Sugar Boys numbers.... well, the biggest thing we have noticed is that we have had to drastically back off the amount of insulin he is receiving since going gluten free.  But the numbers are good.  And we have only had high numbers twice since going gluten free.  The changes have been AMAZING.

So, what about the blood work, you ask?  Both kids' Celiac scans came back negative.  For now, they have both been diagnosed as just having a gluten sensitivity.  Sugar Daddy really should go get blood work done... but he is feeling so good for the first time in years that he is not willing to go back on gluten (and make himself sick) so that the blood work can be ran.  So, for now, we feel we know what we are dealing with and we are dealing with it by staying gluten free.

Its been a huge change.  It will continue to be a huge change... and major adjustment in how we think about food and how I go about feeding the family.  But its worth it.  SO worth it!


  1. WOW! Who would have thought the entire family would benefit! I'm so happy you found a solution to your problems. I bet it feels good to see your little girl not have to suffer from tummy aches anymore!

  2. Hi Donna,
    I'm so glad that you were able to get to the bottom of things. No pun intended.LOL My son has type 1 and celiac. You can find some recipes on my website if you're interested. Some celiacs are also sensitive to dairy. You might want to keep that in your hat in case they are still having tummy issues. I would definitely have your husband checked via blood test. Celiac is autoimmune and definitely hereditary.

  3. My 8-year-old daughter Virginia has Type 1 (dx 3 years ago) and celiac (dx 2 yrs ago). The relief she feels from going gluten free is night and day!! Just like you, before we figured it out her BGs felt impossible to manage. Gluten free isn't easy (our whole family is GF now too), it takes a lot of extra planning from us mothers, but it's so worth it. Good luck! You have a lot of us with you. Besides, compared to diabetes, gluten free is so do-able. I just wish the cure for diabetes was at the grocery store too. :)

  4. Thanks for sharing. Interesting to see how we all have to work on our own family's healthy mysteries. Appears that you've solved one. Good for you guys.

  5. Thanks for sharing. I too have wondered if I have issues with gluten. Tummy troubles are just NO FUN! Glad to hear things are working out better! :D

  6. Donna, I am so glad that this is working for you all. I KNOW in my gut that we have gluten issues here too. (Guess that was kind of a pun too!) Ally's celiac test came back negative, but I still wonder. Her numbers are exactly as you have described Sugar Boy's and I know that I have a sensitivity to wheat - I can feel it! I was thinking that her bloodwork would come back positive and it would force me to go GF. But it didn't. I'm kind of draggin my feet here...I just need to take the big plunge!! Test or no test. I know in my gut!