New diagnosis: how long to transition?

[PhoebeC]

This is my first post. Daughter, age 10, had a positive blood test in July, biopsy last week, and we got the official diagnosis yesterday. Everyone keeps saying to take our time with the transition to gluten-free, there's a lot to learn, etc. So for the last week, since her biopsy, she's been eating gluten-free; we've been testing foods to see what she likes, eating gluten-free family meals, but we have not started being vigilant yet about cross contamination, and haven't cleaned out the kitchen or discarded old utensils/cutting boards/etc.  I'm wondering how long we have to perfect the system until she will start reacting to cross contamination--in other words, how long after going gluten-free do you become susceptible to being glutened? How long do we have to get it right? I know it might be different for each person, but does anyone have a general idea? 

I'm asking in part because she's been feeling surprisingly terrible since the biopsy and beginning to transition to gluten-free. She had an episode of vomiting and stomach pain 4 days ago, and has been randomly nauseated since then. But she couldn't be reacting more strongly to gluten already, could she, when we haven't even fully transitioned to 100% gluten-free yet? She ate gluten for 10 years, until last week, with only mild GI symptoms; lack of weight gain was the clue that led to testing.

(BTW we did take her to the doctor and they don't think her symptoms in the last week are related to the endoscopy. She had a blood test and white blood cell count, sed rate are normal so it doesn't seem to be an infection.)

thanks so much!

[ravenwoodglass]

Please go to the Coping section and read the Newbie 101 thread. Any amount of gluten is going to keep the antibodies active and you want those reactions to stop.  Unfortunately there is a lot to learn but that thread will help. You should start taking care ASAP.  Ask any more questions you need and do be sure to have all other family members tested even if they don't seem to have symptoms.

[Celiac's Wifey]

My daughter has dermatitis herpetiformis (the rash for celiac). Three days after my daughter went gluten free she got huge new rash patches behind both armpits where they meet her back -- one of the same places her dad's DH had showed up decades earlier. We had never seen the rash there before.

This is not a scientific explanation at all, so please don't take it as one, but more of a description or impression of what I felt looking at those new rash patches -- I almost felt like it was because her immune system was reacting to less gluten -- and because it wasn't everywhere, her bodies cells focused on hidden deposits of it that it hadn't attacked before. As if her immune system cells were free to react stronger to the gluten/gliadin that was still present because it was less stressed overall by divided gluten/gliadin deposits sneaking everywhere. 

It took us about two weeks to get gluten the rest of the way out of the house. This was a manageable timetable for our family, including getting the new toaster, though we were being careful about her as soon as we knew. For your daughter's health, probably the sooner the better.

Best luck -- and I hope she's on the mend and feeling better soon.

[PhoebeC]

Thanks, this is helpful! I did read the newbie thread. Wifey, interesting story about your daughter's rash--it matches the timing of my daughter's reaction.

I've been researching for 2 months, since the blood test, and my daughter has only eaten gluten-free since her biopsy. It just feels overwhelming now that we actually have to do the clean-out and think about how to make the house safe. We're going to reorganize and clean this weekend. It's a lot of pressure to do this right so I'm just trying to get a handle on how fast is reasonable. Believe me, I wish I could have done it all yesterday.

I went to the store today about bought a ton of new food, some new utensils, and a new cast iron pan to start with. My daughter was excited about the options. Although I did buy a bunch of snacks, I'm mostly interested in limiting processed food and eating naturally gluten-free starches like cornbread, polenta, stir fry with rice. Tonight I made chicken with socca (chickpea flour pancake) on the side! It's kind of fun, but also a huge mental load right now.

I'm also freaking slightly about arsenic in rice. There's always another rabbit hole to go down...

[ravenwoodglass]

I wouldn't worry too much about the arsenic issue at this point.  Just rinse your rice well before you cook it and maybe go with breads like those from the Grainless Baker. Do be sure to stay away from oats for now. Even the certified gluten free ones as some celiacs will react to them the same as they do to gluten grains. Wait till she is well healed before adding them in so you know if she is one of the celiacs that react.  Don't worry I am sure you'll get the hang if things soon.

[Jmg]

6 hours ago, PhoebeC said:

m also freaking slightly about arsenic in rice.

Try not to! There's some good advice on preparation here Open Original Shared Link

 

[Ennis-TX]

8 hours ago, PhoebeC said:

Thanks, this is helpful! I did read the newbie thread. Wifey, interesting story about your daughter's rash--it matches the timing of my daughter's reaction.

I've been researching for 2 months, since the blood test, and my daughter has only eaten gluten-free since her biopsy. It just feels overwhelming now that we actually have to do the clean-out and think about how to make the house safe. We're going to reorganize and clean this weekend. It's a lot of pressure to do this right so I'm just trying to get a handle on how fast is reasonable. Believe me, I wish I could have done it all yesterday.

I went to the store today about bought a ton of new food, some new utensils, and a new cast iron pan to start with. My daughter was excited about the options. Although I did buy a bunch of snacks, I'm mostly interested in limiting processed food and eating naturally gluten-free starches like cornbread, polenta, stir fry with rice. Tonight I made chicken with socca (chickpea flour pancake) on the side! It's kind of fun, but also a huge mental load right now.

I'm also freaking slightly about arsenic in rice. There's always another rabbit hole to go down...

The others gave some good advice, about rinsing. Funny fact in japan and china where they eat rice all the time....they always wash the rice and rinse a few times before cooking.

Butcher/Freezer paper makes a nice clean safe prep surface and eating surface for meals, and SUPER easy clean up just pick it up dump the crumbs in the trash. When it gets too dirty just toss it. I found boxes of good grade foil sheets pre cut to also be a life saver cooking. https://www.celiac.com/forums/topic/118842-freezer-paper-for-safe-prep-surface/

On a side note I had to drop all grains earlier this year due to a second autoimmune disease that developed as a complication with celiac. I can not have carbs, so no grains or fruits or it will flare up my Ulcerative Colitis, Already gluten soy and dairy free due to celiac and intolerance issues. Point is I found grain free breads, grain free snacks, and grain free meals to be SOOO much easier on my digestion but everyone is different. I just use nut based flours, nut butters, ground seeds etc in cooking and fixing meals and always plenty of veggies.

On another note I composed a large list of gluten-free food alternatives how to get them, sites to check out. etc. I even have some specialty diet foods listed

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

[PhoebeC]

Re: giving up oats before reintroducing, I don't think that's our doctor's recommendation (and we are at a major children's teaching hospital with a specialized program for celiac, doctor is MD/PhD).  Why not do it the other way around: keep certified gluten-free oats in, and then eliminate later if she's still having trouble or her bloodwork is still positive? Not mechanically separated oats, but Bob's gluten-free? I understand the risk, and if it were me, I could handle it, but I'm trying to make this not emotionally devastating for her. It's hard enough to be 10. She wants to make homemade granola and other oaty things.

If it's relevant: the doctor who did the endoscopy said that her intestine looked visually normal; biopsy was positive but she wouldn't have known by just looking at it, so it appeared that not much damage had occurred yet.

 

[cyclinglady]

2 hours ago, PhoebeC said:

Re: giving up oats before reintroducing, I don't think that's our doctor's recommendation (and we are at a major children's teaching hospital with a specialized program for celiac, doctor is MD/PhD).  Why not do it the other way around: keep certified gluten-free oats in, and then eliminate later if she's still having trouble or her bloodwork is still positive? Not mechanically separated oats, but Bob's gluten-free? I understand the risk, and if it were me, I could handle it, but I'm trying to make this not emotionally devastating for her. It's hard enough to be 10. She wants to make homemade granola and other oaty things.

If it's relevant: the doctor who did the endoscopy said that her intestine looked visually normal; biopsy was positive but she wouldn't have known by just looking at it, so it appeared that not much damage had occurred yet.

 

I respectfully disagree about oats.  While it is likely that your  child will not react to oats (about 10% of celiac do) the goal should be to allow her feel better as fast as possible (get her antibodies into the normal range).  This will help her to understand the benefits of being gluten free.    There are plenty of alternative grains that can be used to bake delicious cupcakes and cookies.  If she is not temporarily lactose intolerant, then ice cream too.  When you see obvious improvement, then test the oats.  

Celiac disease damage is microscopic.  Doctors can sometime see visual damage because the stomach or esophagus has sustained collateral damage.  The actual small intestine could be altered when damage is very severe.  Their scopes vary in terms of capabilities.  I had a Marsh Stage IIIB, which is moderate to severe patches of villi blunting, but my visual was normal per my GI.  

As far as antibodies?  One crumb can set off an antibodies flare-up that can last for days, weeks or months.  The problem is you don't know where she will fall.  Will a gluten exposure mean weeks or of misery or not?  I had no GI issues when I was diagnosed.  But each glutening has been different.  So different, that I had to go back to my GI to determine if celiac disease was to blame.  

You and your family will soon adapt to the gluten free lifestyle.  I would encourage you to adapt as quickly as possible.  If other autoimmune disorders can be delayed or prevented, that would be fantastic.  Research, research, research!  Because her treatment, like it or not, is in your hands (and hers).  

[PhoebeC]

OK, thank you. We have an appointment with her GI doctor soon, so I will discuss all this with her and make a plan.

Honestly, the risk for me and my daughter is not failing to understand the benefits of being gluten free. It's being filled with constant anxiety,  stress, and hypervigilance. I've been doing nothing but research for the last 2 months. My daughter has a vigilant, cautious personality already and it's breaking my heart that she won't get to be more carefree. It's only been 2 days and she would NEVER play around with "cheating." She's already reading labels and knows the symbols and warnings to look for.  I am trying to understand how we can be psychologically healthy as we make this transition. My husband is more of a chill personality; I am a worrier and a researcher by nature. I guess I was trying to get some reassurance that I'm not going to give my daughter lymphoma by allowing her to make the "certified gluten free oat ball" recipe she found. But maybe I'm barking up the wrong tree here.

[ravenwoodglass]

It can be a tough adjustment at first but you will get through it.  She can still be carefree, she just has to be prepared. If she goes to a friends house have her bring snacks that are safe so if she gets hungrey she knows she has safe food. Keep stuff like UDI'S gluten free or Freshetta gluten free pizzas on hand so if her friends are having a pizza party she can safely join in, for example. There are a lot of foods that are safe that your family and her can enjoy.  If you live near a Wegmans grocery store they make it easy by labeling all their gluten free foods with a circle G. That makes shopping easier. Aldi's also has some gluten free stuff and I have even found gluten free foods in places like a dollar store. They had Shars gluten free pizza crusts for a dollar not long ago!  It is going to be stressfull but you will get the hang of it in no time. Unfortunately you may find there is much more info here than your GI or a dietician can give you. But we are here to help in any way we can.

[cyclinglady]

You will all get through this.  There is a grieving process.  Your life will be different, but it can be just as good.  My hubby has been gluten free for 16 years.  You can imagine my shock when I was diagnosed 12 years later.  We only have one daughter who is sixteen, but so far she has not tested positive for celiac disease.  

We have adapted.  My best investment has been a freezer.  I make sure that at any given time, we have slices of cake, cupcakes, cookies and bread on hand and meals in case I am not up for cooking.  I store all my gluten-free flour in the freezer too.     Before my diagnosis, I simply prepared gluten-free food for all of us.  When we went out (to work, school. Etc) my daughter and I ate gluten.  Now, the entire house is gluten free because it is just easier.  My daughter eats gluten free all summer for the most part and gluten at school.  Her friends bring her "gluten" sandwiches as a treat for her.  

I still bake.  I make  all our favorite and traditional holiday  family foods gluten free.  I serve them to our extended family and they can not tell the difference!    

Our  friends and family have adapted.  We host a lot, but that is okay.  We bring our meals to potlucks, so we do not feel left out.  We travel, even internationally.  It just all takes a little more planning.  

One of the girls in my troop has a severe milk and nut allergy.  Her friends and fellow Girl Scouts have always made her feel welcome and special.  Nothing holds this teen back!   

You will be just fine!  We are here to help each other.  

Hugs!  ?

[PhoebeC]

Thanks, all. I had to take a few days away from the forum because I was making myself insane with research. There are a lot of experts on these forums, but also a lot of other anxious people, and it wasn't really helping my state of mind!

So I think I was wrong about the oats recommendation from our doctor. I apologize for the mistake. We still haven't had the follow-up appointment, but some materials that I read indicate that they do recommend staying away from oats until your blood test numbers indicate that you're recovering well. Thanks for steering me in the right direction. I wish I could get past this early learning curve stage and be an expert already, but the only way out is through.