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TwinMama83
member
SPD caused by Celiac Disease? LONG
TwinMama83
member
Here is a little of our back story.
I've always known something was "off" with my son. As an infant he was completely inconsolable, absolutely all the time. Eventually we discovered that the only thing that made him happy was to hold him. And not just snuggle and love on him, he had to be held while we were standing only and must be held a certain way. We didn't need to walk or sway, it wasn't the motion he wanted. It was like the weight and pressure of being held calmed him.
Fast forward to about 12 months old and he is an extremely picky eater, we discovered he has a milk protein allergy (in addition to a beef and soy allergy), he was saying zero words, showing some stimming behaviors, extreme sensitivity to bright lights, loud sounds, certain clothing/shoes, he couldn't/wouldn't play with other children, never played "appropriately" with toys, in addition to the continued extreme fussiness on a daily basis over seemingly nothing. We never knew what would set him off or what would make him happy. At this point we started EI and a group speech therapy in California. At age 18 months the state gave him an autism screening and he was given a diagnosis of PDD-NOS. He was only saying about 2 words at this point. We began ABA therapy but the people providing the therapy were awful, disorganized and my son never improved one bit.
Around age 22 months we moved to another state and discontinued therapy temporarily. In the meantime, after he received the PDD diagnosis, I read every book I could on ASD, children with sensory challenges and the GFCF diet. We decided to give the GFCF diet a try since, even though he hadn't had milk items in about a year, he was still having a ton of GI issues that our gastroenterologist couldn't figure out. We figured adding a GF diet couldn't hurt. (We never saw a DAN Dr but we were monitored by a child nutritionist).
The results were incredible. Within about 3 days nearly all of his sensory issues went away and he started adding several words on a daily basis. His GI issues also completely went away. His bloated, distended tummy was now totally flat! We were blown away! Eventually we get settled in the new city and began new assessments to get him set up with new therapy services. He wasn't showing any of the old things we saw in California. I'd tell them about what he was like (or used to be like...) but they never saw it for themselves. The therapists still saw a significant speech delay and took my word for it and the previous assessments and opted to start ABA therapy because of the previous PDD diagnosis.
A month later, due to unforeseen circumstances (mold), we had to move out of our house and into another house across town. During this week of moving all our food was packed and we were kind of between kitchens and we ate out a lot and "cheated" a lot and my son ate a lot of gluten. All these sensory things started coming back. He was suddenly obsessed with ceiling fans again. He was so picky about what he would wear. He would LOSE IT in the car if it was too bright. He refused to eat favorite foods. The list goes on and on. I knew it was the gluten! I mentioned it to his SI and she said that she and her team sat down and discussed my son's case and determined that it was NOT PDD. NOT ASD. They believe he has Celiac Disease and that it causes him to have SPD!
Whoa. When we were going through all the GI issues we had him tested for CD and the initial blood tests came up positive and the secondary genetic tests came up with some of the necessary genes, but not all. The GI said that makes him more likely to develop CD in his lifetime but isn't enough for a diagnosis. So I guess I'm just kind of blown away and confused. Now that he's back on a strict GFCF diet he has NO SPD or PDD symptoms! They even did a new language assessment on him this week and he scored at 24 months! He is 2yr 3m! He is almost typical!!! I'm just in shock that something as simple as a cookie with wheat and butter can cause all of these huge changes in my son! Plus I feel a little bad that we thought it was PDD for so long and treated it as such instead of investigating the diet and allergies further. 
I guess I'm just wondering if anyone else has a child with CD that caused SPD and has been "cured" by a diet change? I'm' just so blown away by this news and just feel like it can't be true. Can it really be true?
This discussion has been closed.
Re: SPD caused by Celiac Disease? LONG
I am not a mom of anyone on spectrum and I am also not dealing with extreme sensory issues so someone tell me if I'm wrong but Celiac's Disease does not cause autism. Celiac's is an auto-immune disorder (I have it). Celiac's causes a host of gastro issues (mine are a little gastro but includes skin - technically I have DH, but if you have DH you have Celiacs and it doesn't work the same in reverse). Has he had a biopsy of his small intestine done? That is another Celiac test (the blood tests are not always correct but I saw you had genetic screening also).
I can tell you this. I have a friend who has CD and her son also has it. She has told me that she can tell when he has gluten because he gets really aggressive and bad attitude and overall just a complete behavior change. I do not believe her son has any other issues then the CD. She has no reason to lie so I believe her in regards to the behavior change she sees in her son. CD is a life long thing. There is no cure for it. The only "cure", if you want to call it that, is to follow a strict GF diet.
I'm glad that you have been able to find some answers for your son!
Right. So the people in the new state are saying that the people in Cali were wrong. That he never should have gotten the PDD/ASD diagnosis. They said that SPD was/is a much more accurate diagnosis. So now they have officially dropped ALL dx's and his record is only showing a speech and language delay, because once he is on a very strict GF diet he is essentially "cured". He has extremely reduced (I won't say they are completely gone) sensitivities and sensory issues and talks up a storm. Very typical. Obviously he is not *actually* cured because like I said within a couple days of cheating and eating gluten all those things started creeping back in.
And no biopsy. Once they discovered that he only had half the required genes they just quit testing him for CD. And this new "diagnosis" came from his therapist, not an MD, so I'm taking it with a grain of salt.
I guess my real question is, did anyone discover that their child had CD or gluten sensitivity and that is solely caused SPD or something similar? It really seems that in my son gluten is the one thing causing all these problems. It just seems so incredible that I can hardly believe it's possibly true.
I have celiac disease (luckily both my kids are still asymptomatic at this point) but I've heard of this before that ingesting gluten while having undx CD can cause speech delays/sensory issues in younger kids. I would poke around the celiac.com message boards--you may find other moms with similar experiences.
I have a friend who described life with her toddler like this. She and her sister both have CD, but they never thought to test her daughters. It turns out that her daughter's behavioral issues were inhibiting her ability to function typically, but her behavioral issues stemmed from being in pain on a near constant basis.
I have a non-celiac gluten intolerance (NCGI) and I have found that it does cause neurological issues for me when I eat gluten. I had depression and I think auditory hallucinations (I would feel the sound of a door slamming in my brain at random times) before going GF. My brain will also feel "foggier" makng thought processing and communication more difficult when not GF. I also have digestive issues and at times I am so yucky feeling after gluten that I can't concentrate on anything else.
I have had doctors tell me that the elimination diet is the most accurate way to determine a food intolerance -- and I have had doctors tell me that a GF diet is "just a fad diet" and refuse to test me for celiac. I finally had to "order" one doctor to refer me to a Gastrologist/Gastroenterologist (I forget which) just to get the blood test for celiac done. When that came back normal, I said "Screw these doctors. I don't NEED their permission to do an elimination diet" and that is how I determined I was indeed gluten intolerant. So if something the doctor says/does doesn't sound/feel correct, push back and ask questions and demand answers to those questions -- from a different doctor or a specialist if necessary.
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