Why Gluten Free?

Why are we a gluten free family?

I will share words in a moment, but I want to start with this.

This is Caleb at around 5 months old. Round, chunky and fabulous. Thriving.

This is Caleb about 8 months later. Weighing exactly what he weighed at 5 months. He was getting taller, but that was the only growth he was doing.

I imagine that every parent who reads this blog can understand why we were concerned. During this time period, the asthma he had been struggling with since birth was also getting worse. We were referred to a pediatric pulmonologist, who made some med changes but also referred him to a pediatric gastroenterologist. He had some testing, but nothing was conclusive. They told me they could do a scope and small bowel biopsy, but I passed. He was only 10 months old and I didn't think the risks were worth it.

We just kept doing the best we could for awhile, not really having any answers but he was a happy kiddo and he wasn't getting any worse. He continued to struggle with needing a lot of meds to control his asthma, but we were controlling it most of the time.

Then, in late January of 2007, he was hospitalized with pneumonia. This is the only picture I have, taken on my cell phone a few hours before he was discharged but it was not this pretty. It was a lot of long days holding him while he received nebs and oxygen.

After his hospitalization, Caleb showed his first bowel symptoms that clued us into something else that might be going on. Our primary doctor actually discussed testing him for Celiac Disease, but we decided to hold off (he was somewhat anemic and had had a traumatic few months so we decided to hold off on drawing his blood). There was also the possibility that the stool trouble was related to the massive amounts of antibiotics he had been on to fight the pnuemonia, so she wanted to give him a chance to recover before putting him through more testing.

We ended up moving before we were able to do it.

Caleb continued to have extremely irregular bowels throughout the summer and into fall. Our new doctor was not very concerned about them and repeated brushed off my concerns. In the late winter of 2008, Caleb caught the stomach flu and got very sick again. In only a few hours of vomitting he was so dehydrated he needed IV fluids. The doctors in the ER didn't believe me he had only been throwing up since that morning, insisting that it takes at least 12-24 hours for a child to be dehydrated enough to need fluids.

After the stomach bug, Caleb got worse again. Interestingly enough, this is also when he completely weaned from breastfeeding. Even though it had now been almost 2 years since his growth had slowed down significantly, he had only gained around 5 pounds. Definitely not normal for the period of 6-30 months! After our pediatrician dismissed my concerns yet again, we decided it was time for a new primary care giver.

I was almost in tears the first time I met with Dr. W. I was so sure he would tell me there was nothing wrong and not take my concerns seriously... no one else was. I cried sharing Caleb's struggles. He took me very seriously, noting that in the blood work that had been done in the ER a few months earlier, Caleb had been anemic again. He told me his gut said Celiac Disease, but they would run a bunch of new tests in addition (including comprehensive food allergies which he had done before but were negative) to that one just to be sure nothing was missed.

Low and behold C's antibodies were quite high for a 2 year old. Dr. W. and the websites I read had prepared me for the high incidence of false negatives in young children because they simply haven't been ingesting gluten long enough to have built up their antibodies. Not Caleb.

We met with a dietitian the next day and went from there. His first gluten free meal was apples and (I now realize contaminated) peanut butter. It took time, but things got better. I will never forget the look of relief on the dietitian's face when I told her I was already used to preparing foods from scratch. She told me I would be able to adjust more easily and she was right. It wasn't so much of changing how I cooked as much as changing what I cooked.

Six months later, Caleb's anemia was resolved and he had gained 5 pounds. At his 3 year old well child check, his antibody levels had returned to normal ranges. He also went from 3 daily asthma maintenance medications to 1... from almost monthly oral steroid use to only needing it 3 times last winter. And, I will add, not needing it yet this year which is a huge milestone.

We have had our ups and downs since then. We have had a hard time having Caleb's Celiac Disease recognized by other medical professionals because he has never had a biopsy (considered the gold standard in diagnosis). In fact, his pulmonologist does not recognize that he has it. We have been asked by one doctor to return him to the gluten diet for 6 weeks and then have the test. Tim and I have talked about it and we simply aren't interested in it.

Why would we? Caleb is healthy and thriving on the gluten free diet. His asthma is completely controlled. He is growing. He is not anemic. His stools are almost completely regular. There are days when it is challenging, but most of the time I don't even think about it anymore. It is our normal.

Even if the test came back negative, we would not return Caleb to a gluten diet. He has had some accidental exposures and he has always reacted. In fact, as I've gotten used to the gluten free Caleb, his reactions seem so clear to me! Even if he does not have Celiac Disease, then he is most certainly a non-celiac gluten intolerant person.

Eating gluten free is certainly intimidating at first, but it is conquerable. It is stressful when your child can't eat what the other children are eating, but it is worth it. There are so many amazing resources on the web for gluten free recipes and support. My personal favorites are The Gluten Free Girl and Living Without Magazine. Although I am not a food expert by any means, I have shared some of my own recipes on this blog, which you can browse by clicking here.

Although this is not a blog dedicated to living with gluten free kids, it is and will continue to be a blog that is about living life with gluten free kids because it is who we are. If someone finds this post or reads these words when their child has been perscribed the gluten free diet, take heart. You can do it! The new child at the end of the road will be more than worth the road bumps along the way.

Gluten free food gave us our baby back.


Evenspor said...

I don't know whether this is an appropriate question, but can I ask what the bowel movement symptoms were like?

Sandy Hop said...

YES! I'm not getting tested either. Why? Because the only cure for CD is a gluten free diet. So, I'm not willing to go through all that, spend that much money for them to tell me I can't have gluten. Kudos to you for switching Dr's. It's hard I know...I've been through 3! Keep the receipes coming!

Heidi said...

Evanspor- ask away! I only didn't include it in the post because most people probably didn't want to read about it.

Caleb would have 6-8 (sometimes more) very soft to loose stools every day. When he was sick after being in the hospital and again right before he was diagnosed he went to liquid stools for 2-3 weeks. I don't know how we would have kept him hydrated if he wasn't breastfeeding!

Evenspor said...

Thanks! And yay for breastfeeding!

ALI said...

Did you have any issues with him having rashes, like diaper rash, but not?

I've started wondering about this for my son, after reading excerpts from Elisabeth Hasselbeck's book...

I'm so glad you have found what works & are sticking to it! Good luck with continued success!

Heidi said...

Ali we did not have any rashes.
There is a gluten related skin condition known as Dermasomething Hyposometime (its called DH most of the time I see it written). My friend Melissa has a son who has skin involvement in his gluten reactions.

I haven't read Elisabeth Hasselbeck's book, but I would eventually like to. The reviews have been very mixed on the sites I've seen and I'd love to hear what she has to say!

Good Luck with your son!

Special K said...

So awesome that you wrote it all out. My sis had tummy trouble and was incorrectly diagnosed with everthing under the sun from age 13. She always had food "sensitivities" like dairy and pork. Things got bad and she started seeing a black spot. The was the moment when someone diagnosed her and she went on the diet. She got married and tried for a baby and found out for SURE she has celiac as well as PCOS, which has kept her on the diet. She would throw up all the time so randomly and never lose weight. Anyway, her specialist for celiac said there are 6 markers, 4 blood tests, DNA and feeling better on the gluten-free diet was diagnoser #6. So keep it open in the future, it doesnt' have to be an internal exam, find a specialist if he needs the diagnosis, someone who knows what the labs to take actually ARE. Hugs for figuring out the issue, my friend's little one was 9 months when they figured out his massive list of allergies.Thank god for FAAN.

Heidi said...

Special K- Thanks, he has had some of those tests done and they were inconclusive. The problem with redoing any of the antibody bloodwork at this point it is the same as the biopsy. He would have to go back on gluten for 6 weeks (at least) before the tests would be conclusive. That is why we decided to stick with the first antibody test and follow up that was done. I'm glad your friend was finally able to be accurately diagnosed!

Sara @ Domestically Challenged said...

Thanks for sharing. I am interested in learning more, as it is come out in the forefront more lately.
I am so happy for you that you got your little man healthy- I wouldn't take him off the diet either!

Two plus six is 8 said...

What about a noninvasive test, genetic testing? Enterolab https://www.enterolab.com
I wouldn't ever go back on a diet containing gluten, I agree with you. Just an suggestion

You can also find out additional information on my Gluten free "support group" web site (testing)


Karen said...

Hi Heidi....I am so glad to hear your little boy is ok....I "lived" through a childhood of difficulties into adulthood but to find I had celiac disease. I thought I was naturally skinny...LOL! Now, I weigh more than I should, but I am getting healthy! Blessings, Karen Tyler

Unknown said...

My daughter is 4.5 and was tested for Celiac 6 months ago after a horrible episode involving her curled up on the bathroom rug screaming and crying inconsolably. Her pediatrician ascribed her year of complaining about her tummy aches to "bedtime stalling techniques" (she's no longer the kids' pediatrician). We were regulars in the hospital/ER because my kids would get the stomach bug of the season like all their friends, and they would get so dehydrated, they had to be hospitalized. After her bloodwork came back positive 6mo ago, we got a referral - that didn't actually happen for 6mo. I refused to do a followup biopsy and put her back on gluten, and the GI specialist said she was fine diagnosing her with the elevated levels from 6mo compared with the normal levels this time, and the resolution of symptoms (abdominal pain, stools, growth, etc).

I have been through what you went through with your darling son, and this post made me cry. I'm so glad your son is doing so much better! Since it's genetic, myself, my son, and my mother were all tested and found to be positive for Celiac as well. My mother did the biopsy after 2m off of gluten and it was still positive! She's gone from a dozen medications to none!

A friend of mine who has struggled with infertility and miscarriages was also recently diagnosed, and was told that they were likely linked. It's amazing how common it is and how under recognized it is!

Anyway, I'm rambling, but I found your blog looking for homeschooling Montessori materials, and got sucked into reading the rest of your blog. Thanks so much for sharing your story(ies!) and I'm so glad your family is doing well.