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20 Comments

  1. 1

    Christine

    I could’ve written that letter.

    My daughter was diagnosed with celiac this April, two days before her 7th birthday. While my husband and I truly cried tears of joy when we got the dx (it’s not cancer! It’s treatable!), my heart breaks for her every day.

    She’s had GI problems her whole life, and spent most if last year sick, crying to me each morning to not make her go to school because she thought she was going to throw up (after eating toast for breakfast). No, we said, you were fine when you woke up so you can go to school. If only we knew.

    Now we have to explain to a seven year old that even when she’s “healed” she still can’t ever have cake at a friend’s birthday party. She will always bring her own snacks. And she still might barf in herself or poop her pants at school if she accidentally has gluten.

    She’s a trooper, in some ways stronger than me. She takes it all in stride because she doesn’t want to be sick again. If only it were that easy.

    Reply
  2. 2

    Donna

    Wow! God bless Mom and her sweet little daughter! I understand a parents love all too well and Mom wrote about it beautifully!!! Thanks for sharing such an intimate letter!!!

    Reply
  3. 3

    Angel

    Oh, how I can relate! My son was diagnosed at age 3. He is now 6 and in first grade. He accepted the celiac diagnosis and GF lifestyle much better than I did. Eternally grateful for that! I cried myself to sleep many nights that first year, but never let him know. A mother’s love has no end. Thankful for my healthy boy!

    Reply
  4. 4

    Jenny

    I too have an 8 year old daughter recently diagnosed with Celiac’s Disease. We have adjusted as a family, but by far she has been he strongest among us. For us it’s a roller coaster ride…one minute fairly easy to take and the next moment so difficult. Kids parties, play dates, bbqs, traveling; all of these have to be well planned out and each of them have had a little fun taken out of them for that reason. As parents we were happy to find out what ailed her, and happy to know that we could help make her better. However as a child, she unfortunately has had to grow up a little faster than necessary :(

    Reply
  5. 5

    Michele Richard

    I can relate to this very touching and well written letter. Both of my children have had health issues and yes celiac is an issue for one of my boys. I hope this little girl heals up soon. My heart goes out to her and her mommy.
    May she heal and be well soon.
    Warmly,
    Michele

    Reply
    1. 5.1
  6. 6

    Rachael

    So beautifully written……she took the words right out of my mouth. We are 12 days into the school year and as I write this, my two daughters with Celiac(8 and 14) are both home with me today, sick and tired and fed up. Last night was a night that I laid in my bed after they were asleep and cried as well. Being powerless is perhaps the worst torture for a mom. I pray for the gift of patience every night because I’m simply out of it. Gluten Dude….your timing is amazing. To the mom who wrote those thoughts……God bless you and your little girl. I hope there ill be tears of joy and smiles galore very soon!

    Reply
    1. 6.1

      Julie

      Thank you Rachael. We almost didn’t make day 4 of school this year. She’s been in so much pain, she can barely stand up. She’s back in testing mode – trying to see if there’s anything in addition to celiac.

      Reply
  7. 7

    Jackie

    I’m bawling. Literally can’t speak as I read this with my own 8 year old with Celiac. Sounds like our own story. Many, many tears. Thank you so much for sharing. Please let the mother know that we found great help of healing through the GAPS diet (gut and psychology syndrome).

    Reply
  8. 8

    Kadee

    I’ve have Celiacs my whole life and never knew until 2 years ago. (I’m 20 now.) I know what it was like.
    I can’t write what I want to say because I don’t know how to say it.
    So, Thank you for your post.

    Reply
  9. 9

    Phyllis712

    Wow. It’s beautiful that a family member cares that much. My family would never care that much or understand that much. She is a beautiful person & a wonderful mom. Her daughter is fortunate to have that support.

    Reply
  10. 10

    Tiera

    Tears. Oh how this brought me to tears! What a beautiful way to express to your child, later in life, what you saw and felt and how you reacted when they were younger. Just a really neat idea!

    My 6 year old son was just diagnosed and he is my trooper too. It never ceases to amaze me how resilient kids can be. He has embraced the gluten free lifestyle (as has his 15 year old brother) in a way only a child can. But every once in a while something will sneak up on us and find us unprepared and that is when my heart breaks for him.

    It is amazing how different it is to hear a child cry when they can’t have cake because of their behavior to what it is like to hear them cry because it truly is unfair because they can’t have cake because it will make them sick. :(

    Reply
    1. 10.1

      Jeanne Reid

      Let them eat cake, gf cake that is….have you tried the Gluten Free Betty Crocker or Bobs Red Mill GF cake mixes, cant taste the difference!

      Reply
  11. 11

    Jess

    Just beautiful…thanks for bravely expressing what it is like to be a mother of a child with Celiac Disease (or any chronic illness).

    Reply
  12. 12

    Sue

    Wow…very touching. Your daughter is in good hands.

    Reply
  13. 13

    Jeanne Reid

    I read this post last night with mixed emotions, thoughts of it have haunted me all day! I understand the mommy armor & I the pain….my 1yr old nearly died last year thanks to undiagnosed celiac & my now 8yr old was diagnosed too. There was a lot of frustration, sadness & pain in the beginning, but there has also been a lot of healing and the good days far outnumber the bad. I understand your tears. But also want to inspire and empower you. I cant tell from the post how long its been since diagnosis…but if she is gf, she shouldnt still be suffering so much. I hate to say it, but I learned not to put my faith in doctors on this one….warrior mom needs to dig deep. My 7yr old son got better gf, then 6 months in, he got worse. We tried things, cutting dairy was magic! Cross contamination may be an issue. My point, dont accept the pain- figure out the why that is keeping her from healing. Id be happy tohat anytime, we moms can get through this and she will live

    Reply
  14. 14

    Celiac Mindwarp

    So with you
    It is asthma and nut allergy for my son. I get that whole keeping it together thing. I was pleased in a way when I had to go gluten, dairy, soy, corn etc free, as we deal with the food restrictions and label checking together.

    I remember before kids wondering how parents handle kids being ill. Now I know.

    Wishing all of you strength on those difficult days

    Reply
  15. 15

    TEXGF

    Wow. I can relate. I was diagnosed about 11 months ago. I decided to have my 3 year old son who was always sleeping and cranky with dark circles unde his eyes get tested this spring – he was positive just like his daddy. It terrible to know that it was me who passed this disease to my son. While my heart breaks I have to teach him to be tough, he is doing pretty good and understands that gluten makes his belly hurt. I forgot to take gluten free crackers to his Sunday school this morning, I feel bad because once again everyone else got a graham cracker treat and he drank water. But he’s a smart kid, I’m proud that he already takes it in stride and directs his attention elsewhere on his own even though at times you can see that little bit of hurt and left out in his eyes. I’m his biggest fan and I’m glad we caught his disease at 3 years old instead of him being like daddy and actively suffering for 13+ years with no answers from doctors. Great Post.

    Reply
  16. 16

    BB

    I have to ask are your childs symptoms really gone?

    Reading these stories and reading people suggest Gluten free processed foods (cake). Every thing sold in our stores as “GLUTEN FREE” is NOT really GLUTEN FREE. Please do the research. People that react to Gluten can react to all grains, including anything corn derived, milk because of Casein, soy and MORE.
    I’ve had symptoms my entire life, exploded in the last 10 years. EVERY doctor was clueless!!! The only thing I can eat is Meat, veggies and fruit to truly have no symptoms.

    Best wishes to all.

    Reply
  17. 17

    Ashlyn

    Oh how much I absolutely loved reading this. I finally found out about celiac disease a year ago ( I am 21) and self-diagnosed myself. I have lost 80 lbs so far and have completely changed my whole lifestyle and diet all by myself. All throughout elementary, junior high, and high school, I was in pain. I played basketball and ballet, (even when I was obese) to try to mask the pain. I missed sooo much school because of celiac disease and being so sick. I am so happy for all the kids who get an early diagnosis so that they don’t have to go through what I did with absolutely no support or help. I still feel really bad and tired but I am 70% better than I have been.

    Reply

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