"Slip ups" with a gluten diet

[Ted Vernon]

i have a 4 year old daughter  with celiac disease, when she was diagnosed at age 2 we started a gluten-free diet and everything seemed to get better. since we have started with the gluten-free diet we have had a few "slip ups" whether it was my wife or I with a cross contamination issue or our daughter accidentally grabbing a cookie and eating it at daycare. Our house is  90% gluten free, the other 10% is stuff she would never eat (spices for cooking or some kind of processed food she knows not to eat). We are very careful cooking non gluten-free foods in the house and disinfect all areas after using non gluten-free items. I know immediately if she has gotten in to gluten because she will start vomiting 15 minutes after exposure to gluten and thats followed by about a week and a half of pooping issues. the issue with pooping for her is that it hurts her so bad she will hold it for as long as she can and after 3-4 days it gets real bad to the point where she is very lethargic, wont eat, doesn't want to walk around and just wants to lay down and sleep. Once she goes poop her attitude completely changes instantly and she is back to being my fun, sweet 4 year old girl that want to go outside and play. I am only assuming when she gets cross contamination she has all the symptoms above but there is no vomiting involved. For the past two years it seems we make it 3-6 months and we will have a "slip up" on Ava's gluten-free diet and she goes thru this week and a half process of holding poop in and feeling terrible and going thru amazing amounts of pain, when we put her on the toilet she will scream , cry, and bounce up and down it hurts so bad. As a parent just looking for answers, what more can i do for her besides a gluten-free diet and being very careful about the cross contamination issue? is there vitamins or supplements that would help? Seems like the people on this website know more about celiac disease than the doctors we have been seeing. thank you in advance for any help or advice given!

[tessa25]

Sounds like she has constipation. I don't know what one does with kids, but lots of cooked zucchini can get things moving. And magnesium get things moving. But I don't know  what the rules are with kids and magnesium.

[Ennis-TX]

3 hours ago, Ted Vernon said:

i have a 4 year old daughter  with celiac disease, when she was diagnosed at age 2 we started a gluten-free diet and everything seemed to get better. since we have started with the gluten-free diet we have had a few "slip ups" whether it was my wife or I with a cross contamination issue or our daughter accidentally grabbing a cookie and eating it at daycare. Our house is  90% gluten free, the other 10% is stuff she would never eat (spices for cooking or some kind of processed food she knows not to eat). We are very careful cooking non gluten-free foods in the house and disinfect all areas after using non gluten-free items. I know immediately if she has gotten in to gluten because she will start vomiting 15 minutes after exposure to gluten and thats followed by about a week and a half of pooping issues. the issue with pooping for her is that it hurts her so bad she will hold it for as long as she can and after 3-4 days it gets real bad to the point where she is very lethargic, wont eat, doesn't want to walk around and just wants to lay down and sleep. Once she goes poop her attitude completely changes instantly and she is back to being my fun, sweet 4 year old girl that want to go outside and play. I am only assuming when she gets cross contamination she has all the symptoms above but there is no vomiting involved. For the past two years it seems we make it 3-6 months and we will have a "slip up" on Ava's gluten-free diet and she goes thru this week and a half process of holding poop in and feeling terrible and going thru amazing amounts of pain, when we put her on the toilet she will scream , cry, and bounce up and down it hurts so bad. As a parent just looking for answers, what more can i do for her besides a gluten-free diet and being very careful about the cross contamination issue? is there vitamins or supplements that would help? Seems like the people on this website know more about celiac disease than the doctors we have been seeing. thank you in advance for any help or advice given!

Magnesium Citrate will fix her problems, I had the same issues....heck the jumping up and down and hurting poops....sounds like my childhood, little did we know then.
Get Natural Vitality Calm, start her on 1/4tsp (1-2grams Scales help) up the dose 1/4tsp (1-2g) a day til she gets loose stools, then back down 1/4tsp. And you found her dose, this is called dosing to tolerance. Many with celiac get magnesium deficiency issues, feel free to look up the symptoms and see if hers match. Using the magnesium as a daily supplement might be needed.

Oh another note, gluten is not a germ and does not "sanitize" unless your using 500F to destroy the protein IE oven self clean cycle and this works with cast iron and pans. Gluten is a protein like blood, so think cleaning like your trying to prevent a CSI Tech from finding the blood. Somethings can not be cleaned and you need a dedicated gluten free version and toss one when it gets CCed, IE Cutting boards, colanders, scratched pots/pans, graters, some serrated knifes.
Other common things are condiment jars, etc. a 100% gluten free house is very easy, and everything can be done gluten free now days.

Do read up on the newbie 101 section, sometimes going over it will help a oversight on a issue.
Also I have a list of gluten free alternatives that might help with keeping some meal options around and give you a way to go 100% gluten free in the house.
https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/

 

[Ted Vernon]

thank you so much for the reply back, you just taught me more that the gastro doctors have at multiple visits. would you suggest the magnesium even if her stools are soft? 

[Ennis-TX]

1 hour ago, Ted Vernon said:

thank you so much for the reply back, you just taught me more that the gastro doctors have at multiple visits. would you suggest the magnesium even if her stools are soft? 

Maybe in smaller doses, it helps keep water in the stool and stimulate the intestines, think of a natural stool softener. I have to vary my dose depending on bowl habits. Particularly I need to up the dose a few days after a exposure after it rebounds into constipation then taper back down as it gets back to regular then a lower maintenance dose.

[GFinDC]

I suggest you get some Me+My Gluten Assist from CVS.  Give her a couple if you suspect she has gotten glutened.  This isn't a silver bullet but it may help a little.  The sooner she takes it the better after a glutening.

IMHO, it is normal when glutened to have C for a few days followed by D.  Magnesium is a good idea, along with plenty of water.  Some people use hot water bottles on their abdomen to ease pain.

She is too young for the wine and aspirin treatment and probably too young for Pepto Bismol also.  Pepto Bismol helps because it soothes the gut, but it has aspirin in it and young children are not supposed to take aspirin usually.  Slippery Elm tea might help as an alternative.

Another thing that might help is peppermint tea.  One of the things that can cause pain during a gluten reaction is excessive gas in the stomach and gut.  Drinking peppermint tea relaxes the smooth muscles and can help to get gas out.  I suggest she only drink peppermint tea when having a reaction though, not all the time.  She shouldn't drink soda or eat sugar or carbs during a reaction.  Also, she shouldn't eat any dairy during a reaction.  All of those can cause a lot of gas (bacteria) and that causes pain.

Stevia is a great natural sweetner that makes a good sub for sugar in many foods.  It is best to stick with whole foods instead pf processed foods too.  Even gluten-free processed foods are bad during a reaction as they usually contain more sugar and carbs than regular baked goods.  So no gluten-free cookies or cakes etc during a reaction.

It can take 6 weeks or more for symptoms to subside after a glutening, and months for antibodies to go down.  So it is important to try and minimize glutenings, especially during the initial healing period.  It can take 18 months or more to heal a celiac damaged gut on the gluten-free diet.

Since celiac damage impairs the ability to absorb nutrients, she may become low on vitamin B-12, vitamin D, iron, etc.  So monitoring those every once in awhile is a good idea.