Newbie - Any Advice Please?

[MummytoDan]

Hi everyone - hope you don't mind me posting here? I'm from the UK & found out yesterday that my son, Dan, may have coeliac disease. He was referred to our local hospital by our GP as he has dropped down to 9th percentile for his weight & 2nd percentile for his height. He had tracked around the 50th percentile for both until he was 1 and at 2.5 he has started to drop for both weight & height. We saw a consultant at the hospital and we explained that other than the growth issues, and v smelly stools, he appears to be a normal fit & healthy child (albeit a few chest infections this year & also pale complexion). The consultant ordered lots of blood tests and called yesterday to say he had tested positive for coeliac disease, which is not something I had heard much about until now! She explained that he'd need further testing to confirm the diagnosis which would usually be a biopsy but can now do some other type of genetic blood test which he is booked in for next week.

In your experience Does the positive test mean that he will definitely have coeliac? What are the chances that it won't be this and could it be something else? If it is coeliac are there other complications that need to be considered?

Apologies for all the questions but v new to this and as I was in shock yesterday didn't think to ask the consultant! Thank you in advance for your help!

[bartfull]

If he tested positive he has it. It's not a bad idea to get the biopsy done as that will measure the amount of damage in his gut.

 

Advice? Well first of all, celiac runs in families and all first degree relatives should also be tested - both parents and any siblings. If any test negative they should still be tested every two years because celiac can show up at any time during a person's life.

 

Now, take a deep breath and realize that while celiac is a serious disease, once a person has committed to a gluten-free diet, healing begins. Some folks heal more quickly than others, but once a person has healed, not only do they feel great, but they will be avoiding the serious complications that a celiac who continues to eat gluten will face. In other words, a celiac who keeps to a strictly gluten-free diet has the same life expectancy as a person who doesn't have it.

 

In the coping section is a thread (right at the top) called "Newbie 101". It will teach you all about the disease and how to do the diet. Cross-contamination is not a good thing so you have to avoid it. For example, if someone spreads butter on their gluteny bread and then dips the knife into the butter again, that whole stick of butter is now contaminated and will make your son sick. But the Newbie thread will explain all of that in detail.

 

So read that thread and maybe even take notes because when we write something down we remember it better. Then come on back and ask any questions that come to mind. We're here for you.

 

Oh yeah, and give your son a hug for us.

[MummytoDan]

Thank you so much for your reply.

I'll go straight over to the newbie thread for a good read now.

I'm now concerned that my 4yo little girl may have it. She is v tall - 91st percentile - but poos a lot and they're always floaters (sorry tmi!)

Thanks again!

[GF Lover]

As Bartfull said, do get your daughter tested.  An endoscope would be something to consider.  They look for damage and abnormal cells by taking biopsies.  Once you have a baseline on any damage, you can have follow up scopes to make sure he is healing if he is still having some issues.  His blood tests should be checked periodicallly also to look for reduction of anti-bodies, again, to make sure his is healing and not getting any gluten.  Another thing to consider is testing his thyroid function tested which is a simple blood test.  Autoimmune diseases often come in multiples and Thyroid Disease is very common with Celiac.  False Negatives for Celiac can be problematic, False Positives are rare.  

 

There is a lot of information on Celiac Disease to digest.  There is also a lot of crazy information about Celiac.  Always make sure your sources of information are credible.  

 

Colleen

[MummytoDan]

Thanks Colleen - all this info is so helpful! A lot to take in xx

[squirmingitch]

Take a deep breath & don't panic. There's a steep learning curve to this diet & realize you're not supermom even though you want to be & it will take time to learn all the rules. You already did the biggest part which was getting him tested to find out why he was dropping in the percentile. Yes, you will need to have your daughter tested too & any other kids you may have. You, your hubs & from there depending.... your or your hubs siblings. You get the picture. Celiac disease can present with absolutely ZERO symptoms at all so be aware of that. 

Colleen's last line is of great import. Remember it.

Bartful gave great advice. 

At this young age for your son, he will be great once he is fully gluten free. Thankfully this is something that is wholly controlled by eating gluten free -- no meds, no surgery needed. And there are replacements for revery food out there. 

[nvsmom]

The others gave great advice.  The only thing I would add is to have his nutrient levels checked and possibly check for anemia (most common celiac disease symptom now).  The nutrients to check are D, B12, Fe, ferritin, K, Mg, Ca, A, Cu, and zinc. Some celiacs need to be prescribed high doses, or injections,  of some of those vitamins until they are healed.

 

Welcome to the board and good luck with testing the family. 

[MummytoDan]

Thank you - learning so much already. My husband has had awful mouth ulcers for the last 10 years & just read that this may be a sign. We'll all definitely be tested.

Thanks

[Tigger 68]

Hi everyone - hope you don't mind me posting here? I'm from the UK & found out yesterday that my son, Dan, may have coeliac disease. He was referred to our local hospital by our GP as he has dropped down to 9th percentile for his weight & 2nd percentile for his height. He had tracked around the 50th percentile for both until he was 1 and at 2.5 he has started to drop for both weight & height. We saw a consultant at the hospital and we explained that other than the growth issues, and v smelly stools, he appears to be a normal fit & healthy child (albeit a few chest infections this year & also pale complexion). The consultant ordered lots of blood tests and called yesterday to say he had tested positive for coeliac disease, which is not something I had heard much about until now! She explained that he'd need further testing to confirm the diagnosis which would usually be a biopsy but can now do some other type of genetic blood test which he is booked in for next week.

In your experience Does the positive test mean that he will definitely have coeliac? What are the chances that it won't be this and could it be something else? If it is coeliac are there other complications that need to be considered?

Apologies for all the questions but v new to this and as I was in shock yesterday didn't think to ask the consultant! Thank you in advance for your help!

PRAISE GOD THERE IS SO MUCH HELP IN PRESENT TIMES......YOU WILL NEVER BOTHER ANYONE BY ASKING AND SEARCHING OUT HELP ON THIS SITE.-VERY GOOD POSSIBILITY LACTOSE INTOLERANCE.!  SEVERE PAIN WITH DAIRY PRODUCTS..GOD BLESS YOU.!......

[MummytoDan]

Thanks again to everyone for their replies. It's good to know that there's a lot of support out there! It's late in the UK now so off to bed! Goodnight all!

[StephanieL]

Welcome!  Take a breath and grab so tea and ask questions!

 

Your entire family should be tested ASAP as mentioned!  You need to keep him on gluten till the GI appointment and gather information till then to be prepared if it is indeed Celiac disease!   

 

The great news is that it's totally manageable with diet!  Isn't that great?  No medication. No nothing but adherence to the diet.  Now it can be hard at times but there are amazing alternatives out there.  Also from what I hear (and I'm sure it depends on where in the UK you are) things are GREAT for people with Celiac across the pond!  

 

When my DS (now 8) was dx 5+years ago I gave myself a month to switch over to gluten-free.  I started researching what brands we could safely use for everyday staples.  I wanted to try for 2-3 per week and it actually didn't take that entire month to get him 100% gluten free.  It worked for me as I wasn't completely overwhelmed (still overwhelmed but not as bad giving myself for room for the change).  

As a family we eat 100% gluten-free at home.  (We are also dairy, egg, peanut and tree nut free and banana as well because of life threatening allergies as well).  My DH and I have a stash AWAY from all the kids food where we do at times have things DS can't have. But when we sit down to eat together it is always gluten free.  It was easier for me to do it this way than try and keep track of who eats gluten where and how well did they clean up. There are MANY people here who do have "mixed" houses as well and it worked for them. Perhaps we'll try that when my kids are older and more reliable about cleaning up and less messy as well  

So let us know if/how we can help at all.  Have an amazing day!