Advice please

[Natalia'sMom]

Hello.  

I need advice.  My beautiful 8 year old is in terrible pain.  I took her off gluten and she is so weak and tired and in constant pain and is getting huge bags under her eyes.   I'm scared for her.  

She's due for her upper endoscopy June 13th to confirm Celiac.  

Why is she getting sicker? 

Has anyone tried the Breaking the Vicious Cycle book?

How can I put her back on gluten if she's so sick now?  Should I?  Ugh.  

I just want her to feel better.  

I'm new to this.  We only found out at the end of February but I can't seem to get her well.  We've gotten rid of the gluten in the cat food and shampoo and everywhere I can think of.  Is it the gluten or something else?  Has anyone been through this?

Thanks,

Kirstin

 

 

 

 

 

[Darren]

First let me say I'm so sorry to hear about how your daughter is doing. If sue isn't getting an endoscopy you have to keep her on gluten diet or the scope will not validate.  If sir is confirmed she will get better once completely off gluten. Online research will tell you what and where to look for hidden sources...it's everywhere. It once you become educated it is totally manageable. I was diagnosed two years Ago and was stressed out like crazy for the first month, but once to figure it out all becomes ok. Perhaps see doctor again in the meantime to see if anything else is going on since mid June is still several weeks away. I hope things get better for her. If she's is celiac be aware tha I t can take a while for things to settle down and for her to feel better. It doesn't get better overnight it may take a couple months. Good luck and I hope she gets well soon.

[Natalia'sMom]

Thanks Darren.  

[cyclinglady]

I am sorry that your daughter is ill.  i am assuming her celiac blood tests were positive.  Did you doctor advise that she go gluten free before the endoscopy?  If not, you should let him/her know.  Healing can take a while or you can heal fast.  A person needs to be on a gluten diet for any of the celiac tests to work.  If off of gluten, do not be surprised if her biopsies are negative.  

Please learn more about testing.  

Open Original Shared Link

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the learning curve for the gluten free diet is steep.  I would advise getting a referral to a dietician who deals with celiacs.  If she is getting worse, it might not be just gluten.  Celiacs have various intolerances due to a damaged small intestine.  Is she off dairy?  

[Ennis-TX]

I second what cycling lady here says and would like to point out that some of us celiacs (about 10%) also react to oats even gluten-free ones. There are many other issues that can develop from celiac also, as it its a very complicated autoimmune disease. Gluten is also a HUGE pain to eliminate completely from old condiment jars, tooth brushes, residue on cooking surfaces/utensils/ovens/knives/cutting boards. I might suggest a whole foods only diet with dedicated equipment to be 100% sure. Perhaps a stew made of fresh vegetables, broth, sweet potatoes, no grains, and some fresh meat in a crock pot with a disposable liner? I love egg dishes and they can be fixed in cheap microwave dishes for omelettes, etc. They also make steam trays for microwaves.....just saying to be 100% sure its is not something in the food. Have the antibodies double checked if you can.

PS she needs to be on small amounts of gluten for the endoscope, not much just a cracker or half a slice of bread a day. She can do this at night before bed and try to sleep off the worst of it.

[Natalia'sMom]

6 hours ago, cyclinglady said:

I am sorry that your daughter is ill.  i am assuming her celiac blood tests were positive.  Did you doctor advise that she go gluten free before the endoscopy?  If not, you should let him/her know.  Healing can take a while or you can heal fast.  A person needs to be on a gluten diet for any of the celiac tests to work.  If off of gluten, do not be surprised if her biopsies are negative.  

Please learn more about testing.  

Open Original Shared Link

Open Original Shared Link

the learning curve for the gluten free diet is steep.  I would advise getting a referral to a dietician who deals with celiacs.  If she is getting worse, it might not be just gluten.  Celiacs have various intolerances due to a damaged small intestine.  Is she off dairy?  

The doctor did advise we go gluten free and I've pulled the entire family off.  We have 10 days before she has to go back on and I still haven't managed to make her well.  We have a dietician but I knew more about Celiac than she did and I'm so new.  Maybe I will look for one who specializes. That's a good suggestion.  She's not off diary.  I guess I should take her off in order to see what's bothering her.  

I'm going to find easy to digest foods too.  Has anyone tried the SCD diet??  Is this a good idea for a kid?

[Natalia'sMom]

3 hours ago, Ennis_TX said:

I second what cycling lady here says and would like to point out that some of us celiacs (about 10%) also react to oats even gluten-free ones. There are many other issues that can develop from celiac also, as it its a very complicated autoimmune disease. Gluten is also a HUGE pain to eliminate completely from old condiment jars, tooth brushes, residue on cooking surfaces/utensils/ovens/knives/cutting boards. I might suggest a whole foods only diet with dedicated equipment to be 100% sure. Perhaps a stew made of fresh vegetables, broth, sweet potatoes, no grains, and some fresh meat in a crock pot with a disposable liner? I love egg dishes and they can be fixed in cheap microwave dishes for omelettes, etc. They also make steam trays for microwaves.....just saying to be 100% sure its is not something in the food. Have the antibodies double checked if you can.

PS she needs to be on small amounts of gluten for the endoscope, not much just a cracker or half a slice of bread a day. She can do this at night before bed and try to sleep off the worst of it.

Thank you.  No oats but I will go over my house with a fine toothed comb and get new cooking equipment.  I like your crock pot idea.  

I dread putting her back on gluten.  

Thanks for listening.

This is the steepest learning curve I've ever been on.

 

[Ennis-TX]

8 minutes ago, Natalia'sMom said:

Thank you.  No oats but I will go over my house with a fine toothed comb and get new cooking equipment.  I like your crock pot idea.  

I dread putting her back on gluten.  

Thanks for listening.

This is the steepest learning curve I've ever been on.

 

Yes but if you convert the whole family over, change the house over, and after 2-6 months you will be a master at reading labels and finding the "hidden" gluten in items and have brands etc your trust down. It becomes a bit easier if you think of it as changing brands. You can try to reintroduce some of the gluten-free processed foods if you have no other issues sometimes. But we do suggest a whole foods only diet for the first few months with no oats, dairy, limited grain and starches. This will help boost the healing process.  There might be other food allergies, or intolerance that develop due to the damage and the disease, I for one got a corn allergy and multiple food intolerance that came about due to the damage and complications along with another AI disease UC. She being so young you will probably not have to worry so much about other issues as bad as I did after years of damage.     Just keep a food journal of everything she eats in a day, include all ingredients, condiments, spices (YES it is common for spices, sauces, condiments to be contaminated) snacks etc. times she ate them and notes on how she feels 2-8 hours after eating. You will start to notice patterns if there is a issues and this will help you track down culprits. Elimination diets of removing certain foods for a few days will help also if you suspect something might be causing a issue.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

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

 

^ HUGE help to finding foods, alternatives and places to get things I try to keep it updated and add new things every now and then.

[cyclinglady]

Lactose intolerance is common with celiacs.  It is often temporary depending on your genetic background as a big chunk of the population is lactose intolerant.  The  enzymes to digest lactose are released from the villi tips.  If the villi tips are damaged (they are with celiac disease), then you can not digest lactose.  Best to avoid it for a while.  Doing this will not interfere with celiac testing and may bring her some relief.  

The SCD diet?  That guy is into selling books and fear.  He does have one thing right.  You should not substitute gluten-free junk food for regular junk food.  Who can heal on that?   But....moderation is key (so get her some Skittles as a treat!). The gluten-free diet is hard enough on a kid.  Try the gluten-free diet first before attempting other diets and discuss first with your doctor.  It takes time to damage and time to heal.  Do focus on Whole Foods.   

Do not worry.  You will master this diet!  

[Victoria1234]

1 hour ago, cyclinglady said:

Lactose intolerance is common with celiacs.  It is often temporary depending on your genetic background as a big chunk of the population is lactose intolerant.  The  enzymes to digest lactose are released from the villi tips.  If the villi tips are damaged (they are with celiac disease), then you can not digest lactose.  Best to avoid it for a while.  Doing this will not interfere with celiac testing and may bring her some relief.  

The SCD diet?  That guy is into selling books and fear.  He does have one thing right.  You should not substitute gluten-free junk food for regular junk food.  Who can heal on that?   But....moderation is key (so get her some Skittles as a treat!). The gluten-free diet is hard enough on a kid.  Try the gluten-free diet first before attempting other diets and discuss first with your doctor.  It takes time to damage and time to heal.  Do focus on Whole Foods.   

Do not worry.  You will master this diet!  

I went off dairy for a couple years, then went back onto it slowly. Happily able to eat chees and yogurt again, although I'm now partial to almond milk everything else. Luckily there's lots of non cow dairy options out there!

[Natalia'sMom]

Hi.  We fed her chicken soup with carrots, broccoli, onions, garlic, bay, black pepper, salt, carrots, bone in chicken, and celery.  Normally by this time of day she looks ragged and is in pain.  Right now she's pretty much fine.    

I'll keep it simple for now and add in slowly.  Thanks everyone who responded.  I actually feel hope.