Gluten and Sensory processing disorder

[mel_cur]

My DD (3yrs old) has recently been diagnosed with SPD and we went to her first chiro appointment today. The chiro mentioned that DDs big tummy is not fat, but actually just bloated. She mentioned that Gluten (among other things) would most likely be the cause (its common is SPD kids).

Where do I start with all this? Is there any tests I need to do to confirm gluten/other intolerances with a GP/Ped? No idea where to start and don't want to start down the line of 'can't have this and that just because it *may* be an issue)

TIA!

[~Trish~]

Wow, I never realised the two things could be related. I took my DS1 to a paed chiro last week who assessed him and seems to think he has an auditory processing issue. We have a lot of ceoliac disease and gluten intolerance in our family. I took DS1 off gluten for a little while last year and his tummy ache complaints left, I didn't actually notice if anything else improved because I wasn't on the look out! I put him back on gluten slowly, but maybe I'll re-look at things. Will ask his chiro on Friday.

Sorry no advice at all. I hope you find the answers you need .

[Arcadia]

Have you heard of the GAPS philosophy on food and diet? Search for it on here and the Internet. I know meow has had amazing results healing her son through diet.

[LionsandBears]

There is a clear link between gut health and brain activity. It's worth getting your child tested for celiac disease first. To do this, do NOT remove gluten from their diet. Diagnosis for celiac starts with blood tests and is confirmed through a biopsy of the intestinal track. If the gut starts to heal, you cannot get a correct diagnosis, so you need to keep up the gluten. Celiac is extremely serious, so it's important to get a correct diagnosis.

Even without celiac, there are a lot of other forms of gluten intolerances. For people like me who cannot have gluten, any gluten at any time will cause harm. Not just immediately, but long term, through increased infammation, leading to heart disease, bowel cancer, recurrent miscarriage etc. FYI, I also have ADD and SPD issues. In addition, I was recently diagnosed with MTHFR. These are all related. Coincidentally, I have also started seeing a chiro for these issues.

[mel_cur]

There is a clear link between gut health and brain activity. It's worth getting your child tested for celiac disease first. To do this, do NOT remove gluten from their diet. Diagnosis for celiac starts with blood tests and is confirmed through a biopsy of the intestinal track. If the gut starts to heal, you cannot get a correct diagnosis, so you need to keep up the gluten. Celiac is extremely serious, so it's important to get a correct diagnosis.

Even without celiac, there are a lot of other forms of gluten intolerances. For people like me who cannot have gluten, any gluten at any time will cause harm. Not just immediately, but long term, through increased infammation, leading to heart disease, bowel cancer, recurrent miscarriage etc. FYI, I also have ADD and SPD issues. In addition, I was recently diagnosed with MTHFR. These are all related. Coincidentally, I have also started seeing a chiro for these issues.

Would I go through a GP to get tested or do I need a specialist of some kind? I don't want to put DD through any unnecessary tests if I don't need to IYKWIM but I don't want to ignore it either.

[LionsandBears]

Get a GP referral to a gastroentorologist (sp) or an allergy paed.

[OceanPrincess]

Coeliac can also lead to heavy/irregular periods, osteoporosis, vitamin deficiency and other nasties. Please get it tested properly. I really get on my high horse about it as my mum was recently diagnosed and it can easily be traced back as the cause of many of her illnesses and like L&B said if you start eliminating gluten, they won't be able to diagnose correctly.

[~me~]

We have been going through a paediatric gastroenterologist. He is fantastic. We are also seeing a paediatric allergist as well and a dietitian. They are all excllent and work together on helping us make it easier for our DS2.

[meow]

Personally I wouldn't bother testing for celiac. I 100% believe your daughter is sensitive to gluten but she may or may not test as celiac so there's no point testing in my opinion. I second getting your family onto GAPS. Not only will you heal her SPD but you will improve the health outcomes in all areas for your whole family. Your daughter's SPD is just one manifestation of your entire family's health issues. GAPS is a grain free diet, so it is gluten free but more than that.

All the best. How are you all coping with the news? Are you getting good support for dealing with her SPD? OT is awesome.

[mel_cur]

Personally I wouldn't bother testing for celiac. I 100% believe your daughter is sensitive to gluten but she may or may not test as celiac so there's no point testing in my opinion. I second getting your family onto GAPS. Not only will you heal her SPD but you will improve the health outcomes in all areas for your whole family. Your daughter's SPD is just one manifestation of your entire family's health issues. GAPS is a grain free diet, so it is gluten free but more than that.

All the best. How are you all coping with the news? Are you getting good support for dealing with her SPD? OT is awesome.

Thanks for this! Trying to get my head around her SPD, it's all very overwhelming. I bought all these books to read to understand it better but am currently suffering anxiety so everytime i go to read the books I start crying/freaking out. She loves her OT and is so tired afterwards as its also a swimming day so goes to bed early which is never a bad thing haha. I have noticed a difference in her confidence with new things like she went down a water slide all by herself (we caught her at the end) which is something she would never do before.

I guess the big thing is trying to figure out what is 3yr tantrums and what is SPD? I get the feeling a lot of the issues we have been having is SPD related.

Keep on swimming!

[LionsandBears]

I respectfully disagree with meow about a diagnosis and tests. Celiac is an autoimmune disease. If she has it, correct diagnosis is imperative as it will affect her whole life. Someone with celiac will get sick from a crumb of gluten. Try explaining that when the child goes to a party or BBQ or is fed at kinder. Gluten can be in so many things from medication to make up.

I totally agree with healing the gut and the GAPS protocol is great for that. Working with a neurological chiro etc will help. Just get that diagnosis first. If she doesnt have celiac then great, but unfortunately you cant get correctly diagnosed without still eating gluten.

Try not to stress. I got to 36 before a diagnosis and that was after 3 university degrees. It's just another way of interacting with the world and if she's thriving on treatment then that 's wonderful.

[meow]

There is evidence that those with celiac are not being helped by a gluten free diet, and their health is still impacted. They do best on a grain free diet. GAPS will also heal your gut so that you no longer have celiac. But if you want to test then by all means do. We decided not to though.

I'm so glad you're finding the OT helps. We've been seeing so much increases in our son's confidence with OT too. It's so wonderful she went down the water slide! I remember my son's first time down a slide by himself- it was a HUGE moment

I wouldn't worry about whether things are "3 yo" or "SPD". I wondered about that a lot, until our OT helped teach us that it didn't really matter and you just have to look at your child and what their individual needs are and go with that. The same way any parent does, just with some more complex needs.

[SJL]

Hi,
I recently started my daughter (who has CP, ASD, ID, SPD among other things!!) on a gluten free diet. We have done elimination diets in the past and had fantastic results. The first time we discovered she had a major reaction to dairy - so she has been dairy free for about 4 years and her behaviours are all but gone!! At the time I didn't notice a change/reaction with gluten, then around Easter time this year I came down with severe stomach pains and ended in hospital, after 5 days I was sent home with no answers- after speaking to a dietician I decided to try an elimination diet for me and with the research I did on gluten intolerance I decided to remove it from my daughters diet as well.

In the last 5 weeks since she has been 100% gluten free I have noticed she is tolerating solid foods better (she used to only eat very small soft lumps) She has started eating cakes, boiled eggs and solid banana's on a regular basis. I have also noticed just in the last few days her physical development has improved (she stood herself up from the ground for the first time ever and is managing stairs and uneven surfaces better). Both my daughter and I have had the Gluten intolerance blood test with negative results - the blood tests are not very accurate and you probably don't want to put your little one through invasive testing so it is easier to do an elimination diet.

My opinion based on the results we have had is -if you believe she may be reacting to gluten and you have done your research then try an elimination diet. We removed gluten for 14 days then reintroduced it on day 15 (as per directions from our nutritionist) For myself I had almost instant results, for my daughter due to her inability to communicate it was a bit harder to know what her results were - i had to look for very subtle changes i.e.: colour of BM's.


Good luck with what ever you decide to do, it can be tricky getting used to a new way of eating but it is worth it.

Sjl

[SJL]

The other thing to remember is coeliac and Gluten intolerance are 2 different things. You can be gluten intolerant and not be coeliac.

A gluten intolerance causes damage to the lining of your bowel each time you consume gluten.

Coeliac disease can only be diagnosed once the lining has been completely distroyed.

So you will get the quickest, most accurate and least invasive/traumatic results by completing an elimination diet.

[MLR1901]

It's extremely important to be tested.
Not only may your DD be coeliac but it's often leads to bring fructose, dairy or some fats being excluded from the diet. But this can only be monitored through regular blood tests.
Having more than half our family with a variation of coeliac's and combinations of fructose and processed fats, the common factor is all regularly monitoring through blood.
The effects on some kids is similar to a non fatal anaphylactic reaction. And much harder to see.

There is some great places that sell GF foods online, check out the coeliac society web site.

[meow]

We removed gluten for 14 days then reintroduced it on day 15 (as per directions from our nutritionist) For myself I had almost instant results, for my daughter due to her inability to communicate it was a bit harder to know what her results were - i had to look for very subtle changes i.e.: colour of BM's.

This is what we did but I didn't realise there was a method to it. We put our son on a GF diet then we were moving 2 weeks later and as we hadn't seen any changes we put him back on gluten. It was awful! He descended into a fog and it was very clear gluten wasn't good for him. So we went GF again and over the following couple of months he made amazing gains with his development. Then we went onto GAPS and it's been incredible.

it can be tricky getting used to a new way of eating but it is worth it.

Totally agree.

[Cherished]

There is evidence that those with celiac are not being helped by a gluten free diet, and their health is still impacted. They do best on a grain free diet. GAPS will also heal your gut so that you no longer have celiac. But if you want to test then by all means do. We decided not to though.

I'm so glad you're finding the OT helps. We've been seeing so much increases in our son's confidence with OT too. It's so wonderful she went down the water slide! I remember my son's first time down a slide by himself- it was a HUGE moment

I wouldn't worry about whether things are "3 yo" or "SPD". I wondered about that a lot, until our OT helped teach us that it didn't really matter and you just have to look at your child and what their individual needs are and go with that. The same way any parent does, just with some more complex needs.

I was about to say the same thing. I wouldn't bother getting an official diagnosis. All of these sorts of disorders start in the gut. Society seems to have a need to label everything and that some how makes it 'ok'. Forget the label and go straight to the healing which clearly needs to start in the gut. GAPS is a great place to start. Keep up the chiro adjustments too, you will be wanting to make sure that there aren't any blockages in the important nerve signals getting to the brain during that healing time.

[mel_cur]

thanks for all your replies.

We have the form to get DD tested for the coeliacs BT as a starting point. But I am confused about the whole thing really. So if the BT is inconclusive towards coeliac and she has to get the invasive procedure for a definite coeliac diagnose and has coeliac, what is the benefits of that actual diagnose? Either way she has to stop gluten and possibly dairy anyway.