Struggling To Get On Top Of Celiac

[ytsirkdraw]

I have been quietly lurking, trying to find families with similar issues.  I would love some wisdom, as I am losing my mind.

 

My daughter was diagnosed with Celiac after a 18 months of stomach complaints in early March.  Her panel came back so clearly Celiac that we were rushed into a Pediatric GI the next day.  (IgA over 50; IgG over 100).  She was so anemic that she was not even registering on the test.  In our pediatrician's defense, she was always in the 90 percentile of height and constantly growing.

 

After the endoscopy (lots of visual scaling), we immediately went gluten-free in our entire house.  I even painted the cupboards to ensure that we sealed in anything harmful.  We bought a new toaster.  We replaced cutting boards, cookie sheets.  We did keep our dishes and pots.  We have been closely controlling her diet.  We only buy labeled foods from Trader Joes.  We ensure everything has not been processed on equipment that had wheat.  All shampoos and soaps are gluten-free.

 

She is still in so much pain.  The doctor said it was constipation and put us on a "clean out" order + a cap of Miralax a day.  We did that and she has had liquidy stools ever since.  In our last appointment, the pediatric GI told us she is still getting glutened (IgA is 4 now; IgG is still way over 100) and suggested we replace our toaster.  When I shared (again) our regiment, she didn't have much to say but said we are still glutening our child and to do a "strict" gluten-free diet and to continue with the Miralax for another month.

 

I feel crazy, desperate.  If we have already done what we were told, how can the response be to essentially "do it better?"  Any advice?  Should we ditch our plates?  Our pots?  

 

We scheduled an appointment at the Mayo Clinic.  I just don't know what to do.  Help?

[shadowicewolf]

Trader joes has been a topic of conversation here. it could be the issue, i'll go find the link.

 

Here ya go:

 

https://www.celiac.com/forums/topic/99272-does-anyone-else-have-issues-with-trader-joes-labeling/

 

Other members have had issues with TJs before.

[StephanieL]

1) It's only been a few months. It can take a while for the numbers to go down so that in itself would not worry me (we did testing every 6 months).

 

2)  Shred line and shared facility labeling is 100% voluntary. Just because it doesn't say "shared line" doesn't mean it isn't. 

 

 

 

Have you tried pulling dairy from her diet?  What about art supplies like play-doh?  

With the issues still going on I would move to a strictly whole foods diet if possible. If not I would really vet the products you are using.  

 

Hugs.  You are doing everything right!  You really are! You have done more than a lot of parents have done so PLEASE be gentile with yourself! You rock!!!

 

FWIW: My DS had abnormal tTG's for almost 2 years after going gluten-free. They were falling dramatically over that time (120, 70, 34, 32) but never normal.  After much much much looking over our foods and procedures and asking around here I insisted in seeing another endocrinologist.  Within 3 months of getting on thyroid meds his tTG was FINALLY normal.  I am not suggesting that's the case with you I am just saying it because until over a year later no one was worried that we weren't doing it all to keep him 100% gluten-free.  It wasn't ANYTHING we were/weren't doing!  As long as there is a downward trend that is good.  Again, it's very early to see dramatic changes after that much damage!

[ytsirkdraw]

I have been trying to read even when things are labeled, but I will double back.  Thanks!

 

Trader joes has been a topic of conversation here. it could be the issue, i'll go find the link.

 

Here ya go:

 

https://www.celiac.com/forums/topic/99272-does-anyone-else-have-issues-with-trader-joes-labeling/

 

Other members have had issues with TJs before.

[ytsirkdraw]

Thanks so much!  It's hard to feel like I am doing anything right when she is still in pain.  It's nice to hear that I am on the right path.

 

I have been trying to make everything from scratch, so maybe I will just cut the crackers she eats as well.  Just to be safe.  I have not tried to yank dairy..I have been reluctant because she LOVES it so, so much.  I will give it the ol' college try this weekend.  

 

While your daughter's numbers were headed down, did she still have pain?  Or did switching to a gluten-free diet give immediate relief?

 

 

 

1) It's only been a few months. It can take a while for the numbers to go down so that in itself would not worry me (we did testing every 6 months).

 

2)  Shred line and shared facility labeling is 100% voluntary. Just because it doesn't say "shared line" doesn't mean it isn't. 

 

 

 

Have you tried pulling dairy from her diet?  What about art supplies like play-doh?  

With the issues still going on I would move to a strictly whole foods diet if possible. If not I would really vet the products you are using.  

 

Hugs.  You are doing everything right!  You really are! You have done more than a lot of parents have done so PLEASE be gentile with yourself! You rock!!!

 

FWIW: My DS had abnormal tTG's for almost 2 years after going gluten-free. They were falling dramatically over that time (120, 70, 34, 32) but never normal.  After much much much looking over our foods and procedures and asking around here I insisted in seeing another endocrinologist.  Within 3 months of getting on thyroid meds his tTG was FINALLY normal.  I am not suggesting that's the case with you I am just saying it because until over a year later no one was worried that we weren't doing it all to keep him 100% gluten-free.  It wasn't ANYTHING we were/weren't doing!  As long as there is a downward trend that is good.  Again, it's very early to see dramatic changes after that much damage!

[tarnalberry]

If she is in school (preschool, grade school, any kind of school), there is a risk of contamination there.  (Sensory tables and playdoh for the younger one, snack food contamination for all of them). 

 

If you are buying *any* processed foods, there is a (extremely small) chance of cross contamination, which you might want to elminate for now.

 

If you are using gluten free oats, you probably want to ditch that for a good long while.  10% of celiacs react to even uncontaminated oats because the protein molecules in it are very similar to wheat protein.

 

Keep trying! You'll get there.

[cyclinglady]

All great suggestions from everyone here.  I've been allergic to milk proteins for years prior to my celiac disease diagnosis and getting constipated was one of my symptoms.  Garlic, on the other hand, causes diarrhea.   Go figure! 

 

Fortunately, I'm fine with soy.  I purchase only Silk DHA Omega 3 soymilk because it's the creamiest and best tasting and is not sweet.  Trader Joe's cherry chocolate chip soy ice cream is to die for!  I'd definitely swap out the dairy. It's worth a try.  

 

The foods I loved the most (dairy and wheat) were making me sick!  Ironic, huh?

 

Good luck!  

[cahill]

 

 

I agree with tarnalberry , you may want to ditch the processed foods (at least for now) and go with  just whole foods.

 

 

Since your daughter  just went gluten free in March she may be still going thru withdraw OR Her symptoms may still be from when she was eating gluten .  Her body needs some time to began to heal .Two months in not a long time in the  celiac world .

Give your self and her some time.You are on the right track

(( HUGS)) to you both

[Denine]

I don't know how old your daughter is.  Mine is 10 and was dx'd in January.  Mine was still having severe stomach pains after going on the gluten-free diet.  She ended up with a colonoscopy and another endoscopy.  Her small intestine was almost healed after 1 month on the gluten-free diet and there were no signs of and IBD's.  We finally concluded her stomach pains were STRESS!  Can you believe it?  We started stress reduction techniques and she started to improve.  She is doing very well now.

 

It sounds like you are doing everything right.  It does take time for the antibodies to go down.  We go back in September for her blood work.

 

DD also was off dairy and soy for almost 2 months.

[Guest2000]

If your pots/pans have teflon/plastic/silicon and it is scratched - replace it.

 

I'd cut out the processed / pre-packaged and go whole foods. Not as in the store, but whole, actual foods.  Give it 6-ish months to see any vast improvement.

[ytsirkdraw]

Thanks everyone!  I can't tell you how wonderful it feels to have new eyes on the problem!

 

We are stopping dairy today.  Keep your fingers crossed!

 

Whole food diet...say more.  We don't eat a lot of packaged food right now as it is.  Is it just cooking from scratch?  But does that mean no gluten free flours?  No gluten free pasta? I did a little googling, but I would love a little of your perspective.

 

Seriously, thanks.  I can't tell you how much it means to me to know that it may just take a little more time and careful eating.

[frieze]

Thanks everyone!  I can't tell you how wonderful it feels to have new eyes on the problem!

 

We are stopping dairy today.  Keep your fingers crossed!

 

Whole food diet...say more.  We don't eat a lot of packaged food right now as it is.  Is it just cooking from scratch?  But does that mean no gluten free flours?  No gluten free pasta? I did a little googling, but I would love a little of your perspective.

 

Seriously, thanks.  I can't tell you how much it means to me to know that it may just take a little more time and careful eating."

did you replace the "pasta" pot, that, at least is nec.

[Denine]

Whole foods are just that; meats, veggies, fruit, whole (non-gluten) grains, etc.    I would try it for a while until things calm down and then add in other foods. A lot of places say to skip the gluten free substitutions (i.e nuggets, pizza, fish sticks etc..) until you are more healed.  It does mean cooking from scratch most of the time.

Thanks everyone!  I can't tell you how wonderful it feels to have new eyes on the problem!

 

We are stopping dairy today.  Keep your fingers crossed!

 

Whole food diet...say more.  We don't eat a lot of packaged food right now as it is.  Is it just cooking from scratch?  But does that mean no gluten free flours?  No gluten free pasta? I did a little googling, but I would love a little of your perspective.

 

Seriously, thanks.  I can't tell you how much it means to me to know that it may just take a little more time and careful eating.