Samuel was diagnosed with Celiac Disease when he was 15 months old. Prior to diagnosis he was constantly sick -- running fevers every 2-3 weeks, dealt with croup, strep and more. He also had terrible digestive problems and severe pain. Several weeks before he was diagnosed he was losing weight rapidly, lost energy, slept most of the day, and was basically fading away in front of me. It took fight to get a diagnosis even though he was severely ill.
Celiac Disease is an automimmune disease. Gluten, found in wheat, barley, rye and sometimes oats, destroys the small intestinal lining of an individual with Celiac Disease. The intestines absorb nutrients for our body with little hairs -- these hairs are what is destroyed. Instead of grabbing nutrients {as if the intestinal wall was a shag carpet} the nutrients slip by in Celiac Disease {the wall becomes like a tile floor}. Even though Samuel was eating before he was diagnosed he was, in fact, starving since his body could no longer absorb food.
To read more of Samuel's story click on these links. And please know that I am not a doctor and that information that I give should not be used in place of a doctor's advice. This is our story and I pray that Samuel's journey with Celiac Disease brings hope to those already diagnosed, fight for those looking for answers, and awareness, in general, about Celiac Disease and gluten free living.
12 comments:
I have enjoyed reading your blog and of your dedication to being a mom (regardless of the cost). We have a similiar story with our son. I am now learning to cook & eat grain free (can't have even gluten free grains). But, the time and energy are worth it. As you know.
Thank you for your constant encouragement to keep moving. Keep living. Fully alive. With joy!
Here are some of my recipes I think Samuel would enjoy (if you're interested):
http://refusingtotiptoe.com/category/recipes/
May God continually bless your journey,
Cristal
I am so happy to have found your blog! A friend emailed me the link and said I would be blessed by checking it out - she was right. Our daughter (2.5 years old) just got genetic testing results back last week showing she carries the Celiac and Gluten Sensitivity Gene - it explains the past two years of horrible and painful diahrea and cycles of vomiting that have left her mal-nourished and miserable. The doctors incorrectly diagnosed her with "Cyclical Vomiting Syndrome" after weeks of hospitalization and multiple tests coming back negative. It wasn't until we removed all grain from her diet 6 weeks ago (and watched her hair become shiny, her skin become supple, her diaper rash heal and her diahrea/vomiting STOP) that we realized gluten may be the problem. Wow. I'm sorry your son has suffered with similar problems, but am glad you're sharing your story and sharing info on awareness. Thank you!
Thank you for sharing this! I'm happy I found your blog.
The things you write in your 'about me' make me happy... this is the way I live too!
Not waiting for BIG things and be a good christian in that case, but just the small things everyday. My children are a bit older, but also in changing diapers you can be a servant of Jesus...
And even the big things come in your life. Illness, dangerous operation of our son (which went very well), and several automimmune illnesses in our family.
Something which is well known for me is celiac disease. I reckognize the symptoms of your son. My youngest one was 1 year when I was so ill that I couldn't bear him anymore.
But also for me it was a fight to get the diagnosis, even though I was severely ill... I can repeat your words!
Happily one docter wanted to look in my stomache and took biopsy, because he was inside there, not thinking of celiac disease.
But that was the diagnosis. I'm much, much better now, but will never be 'good'. My bones are weak because of CD, and my whole body is weak because of lack of vitamins and so on.
Happy son who got the diagnosis so early! It will help him lateron in his life, he gets enough food and vitamins now!
Thank you for sharing your thoughts on this blog!
Greetings!
Your story is our story....15 months and SO sick! He is not 7.5 and doing very well though not eating the variety he is allowed to have. So Blessed by this and all your entries.
Leigh Anne
Great resources about Celiac! Thank you for posting! My mom has Celiac and it has been so difficult for her at times. I'm so glad she has a diagnosis now and is feeling better though. Our whole house is GF because we have a daughter with an allergy to gluten-it's not celiac but it's another immune issue that is triggered by gluten!
Thanks for sharing this. My daughter was just diagnosed with Celiacs in late July, just days before her 2nd birthday. We have done a lot of learning over these past few months.
I actually recently blogged about my mild struggle with the medical system...being told at emerge to just "give her more fruit juice" after a bad blockage... I pushed back and finally got answers.
http://www.ideallyspeaking.ca/2012/09/always-trust-your-motherly-instincts.html
Thanks again for sharing your little man's story. So glad I came across your blog :)
I'm grateful to have found this. Our DD was diagnosed with Coeliac(Aus)at 18 months after an Endoscopy. She'd constanly vomit, wasnt growing and had no energy at all. She ended up with a NGT because she was "failure to thrive" at 12 months weighing 6.9kgs. We finally found a Ped(#5)who took some action and would listen. We're struggling with getting her to trust food now as its been making her feel so bad. We've weaned off the tube to bottles but she wont take any solids(she lives on Nutrini energy). We're on yet another waiting list for the OT/Speechy so I'm trying to do alot of food therapy at home, I thought some of you might have some advice. Many Thanks.
I want to reach out to you maybe just for support or to talk with someone that has walked the mile. Last year my husband experienced severe joint pain swelling and weight loss. After being in the University of Penn Hospital for 5 days they released him with not really knowing what was causing it. They slapped "Lupas" diagnosis on him and put him on meds. Fast forward to present. He went off his meds early summer bc he didn't like the side affects and he felt he was masking the real issue. I sadly watched his health decline. He went from a vibrant 40 yr old to someone aged well beyond his years. About a month ago his mother called and suggested he go on a gluten free diet. He has a cousin with some similar issues and he went gluten free and found healing. He has been gluten free for a month now and we see marked improvement. If he does ingest gluten mistakenly he pays dearly for it. We are open to any tips support and testimonials from anyone that has been down a similar road. Thank you so much Ruth rhunsi@gmail.com
As I read your story it was like a trip back in time when my brother, now 33 was diagnosed with Celiac 30 years ago. Back then it was rare and it took years to figure out what was wrong with him. He was slowly starving to death. My mother was diagnosed about 6 years ago and when my son began to have GI problems we had him tested also. He did not have Celiac nor does he carry the gene.
A friend of mine just posted your blog on facebook about Dear sweet mom who feels like she's failing. Thank you for that. I really needed it, after waking up in the middle of the night with worry on my mind and dishes washed (but covering my counters and dishwasher). I just pulled up this story of your son being diagnosed with celiac. My husband has celiac and I'm allergic to dairy. My older son (now almost 5)was always itchy and it took some to realize that maybe he has a food allergy, especially since we both have them. We took him to an allergist and they did extensive testing. He doesn't have celiac, but he has an allergy to gluten, dairy and a slight allergy to egg. I was told by a friend that that might manifest into celiac, so I'm not quite sure what to do. We don't give him any gluten or dairy, but we do give him eggs (not too often), but I do cook with them in our gluten free items. Sometimes it's so hard to know what to do. Thank you for your blog. I will be looking at it regularly. I appreciate you!
Hi! I am new to your blog, but found out a few months that my little guy has Celiac too! He was also 15 months when we found out. I am actually going in today because they think that I have it as well. I am 28 and have never had any symptoms, other than iron-deficient anemia. I hope everyone with a Celiac kid gets themselves and their other kiddos the Celiac blood screen! God Bless!
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