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Was Better But Now Sicker Than Ever - Help!

DonnaD55

By DonnaD55
in Coping with Celiac Disease

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DonnaD55 Newbie
DonnaD55
Posted

My 14 year old daughter was diagnosed with celiac disease almost 2 years ago.  We have been very careful with her diet, cooking almost everything from scratch, eating out carefully about once a week. 

 

She was doing really well for a while, but the last month, she has been getting terrible abdominal cramps and diarrhea with almost anything she is eating.  She is so afraid to eat anymore, she's basically down to eggs and Udi's bread.  We did blood work that indicated her gluten numbers were high again.  I can't imagine anything that she could be eating that would cause this.  Doctor suggested speaking with a dietician and redoing an endoscopy. 

 

I can't imagine what the dietician could add to what we've already learned.  To be this sick, it seems she would need to be getting quite a bit of gluten contamination.  Any thoughts/suggestions??  We have to get through the weekend now before i make appts for dietician and endoscopy.

 

Thanks for any help.  I'm feeling like a pretty desperate mom at this point!

 

Donna

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bartfull Rising Star
bartfull
Posted

Hmm...is there anything new in her life? A new brand of hairspray or perfume? Different cosmetics of any sort? A new pet? (Pet food and cat litter can contain wheat and the dust from them is like flour dust. It gets into the air, then to the back of your throat where you swallow it.) At fourteen perhaps she is dating? If she kisses a gluten eater who has just had a sandwich, she could get sick from that.

 

Also, recheck all of the labels on food she normally eats. Something that has been gluten-free all along could now have gluten. Companies change their recipes depending on price and availability of ingredients.

 

I'll keep thinking and some others with ideas will chime in soon. Maybe we can get to the bottom of this.

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GottaSki Mentor
GottaSki
Posted

Welcome Donna!

 

So sorry to hear your daughter is still feeling poorly.  That she still has elevated antibodies indicates that she is getting gluten somewhere.

 

Once gluten is removed, most of us become sensitive to very tiny amounts of gluten - it does not take a large quantity to make us ill.

 

Is your kitchen a combined kitchen?  If so, do you have separate cookware, cooking utensils, cutting board, colander, toaster to prepare gluten-free items only?

 

It might be a good idea to read through this thread to review necessary steps to prevent cross contamination:

 

Newbie Info 101 - Celiac Disease - Coping With - Celiac.com Celiac Disease & Gluten-Free Diet Forum

 

Are all of her personal care items gluten-free?

 

Could there be issues while she is eating at school or at friends or other family members homes?

 

If you are certain there is very little possibility of cross contamination, perhaps she is intolerant of other food items -- although this would not account for elevated celiac antibodies.

 

I hope she is feeling better soon :)

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anti-soprano Apprentice
anti-soprano
Posted

I'm reading this and it just doesn't add up.  Why would fruits and veggies upset her if this was connected to gluten?  Those have been taken off her safe-foods list, right?  Is it possible that the test is a false positive?  I have no idea if that happens regularly, but I know others on this forum are much more knowledgable about test results. 

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DonnaD55 Newbie
DonnaD55
  • Author
Posted

Thanks so much for your thoughts.  There is only one thing we can find that would have caused her to have a response to gluten.  It was a can of Nesquick (for making chocolate milk).  The ingredients are gluten-free but i stopped reading at 'vitamins and minerals' on the ingredient list - and it says 'may contain dairy and wheat'.  Her symptoms started in early December which may have been when i purchased the chocolate mix in the before Christmas hurriedness.

 

Now, it doesn't seem to depend on what she eats as even a small bowl of plain rice once sent her immediately to the bathroom whereas she has eaten a turkey sandwich (Udi's bread) and been ok.  It seems like something is amiss in her digestive tract that just doesn't tolerate even small amounts of food that is safe.

 

 September, October, November she was completely ok and could tolerate dairy again.

 

We wondered for a while if it was fructose malabsorption as in December, more gluten-free goodies were around with various parties and get togethers so she had more sweets than usual.  But she just kept getting worse and worse even when her diet became very limited.

 

Her stomach even hurts when she wakes up in the morning before eating anything!

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dilettantesteph Collaborator
dilettantesteph
Posted

What happened to me was that I became sensitive to lower levels of gluten cross contamination as time went on.  Gluten free foods are allowed to have up to just under 20 ppm gluten.  Many of them contain much less than this.  This is the amount that is considered safe for the vast majority of celiacs.  My son and I are not in the vast majority.   Some of the gluten free foods seemed to contain enough cross contamination to make us sick anyway.  We do better with an unprocessed food diet.  I hope that you come up with a good solution for your daughter.  Maybe the Nesquik will be the answer and you won't have to eliminate anything else. 

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DonnaD55 Newbie
DonnaD55
  • Author
Posted

What happened to me was that I became sensitive to lower levels of gluten cross contamination as time went on.  Gluten free foods are allowed to have up to just under 20 ppm gluten.  Many of them contain much less than this.  This is the amount that is considered safe for the vast majority of celiacs.  My son and I are not in the vast majority.   Some of the gluten free foods seemed to contain enough cross contamination to make us sick anyway.  We do better with an unprocessed food diet.  I hope that you come up with a good solution for your daughter.  Maybe the Nesquik will be the answer and you won't have to eliminate anything else. 

OK thanks.  That's interesting.  At this point, that is true for her as well.  She cannot tolerate the regular gluten free cookies she used to eat. 

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DonnaD55 Newbie
DonnaD55
  • Author
Posted

Hmm...is there anything new in her life? A new brand of hairspray or perfume? Different cosmetics of any sort? A new pet? (Pet food and cat litter can contain wheat and the dust from them is like flour dust. It gets into the air, then to the back of your throat where you swallow it.) At fourteen perhaps she is dating? If she kisses a gluten eater who has just had a sandwich, she could get sick from that.

 

Also, recheck all of the labels on food she normally eats. Something that has been gluten-free all along could now have gluten. Companies change their recipes depending on price and availability of ingredients.

 

I'll keep thinking and some others with ideas will chime in soon. Maybe we can get to the bottom of this.

Thanks so much for your thoughts.  There is nothing new (w/exception of my Nesquick slip up that i posted below).  We have checked and rechecked all food.  We have been remodeling the kitchen though and the new dishwasher was installed in early January.  The recommended soap for it was the Finish tabs and the sample ones came with a clear coating on them.  My husband thought that perhaps that coating would have contaminated all our dishes.  Seems a little far out, but we were desperate! Have changed DW detergents just in case.

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bartfull Rising Star
bartfull
Posted

AHA! Sheet rock dust! And the compound they use! They all have gluten. If she breathed that in it would get in the back of her thoat and she would swallow it. If that is the case it would explain the elevated antbodies.

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DonnaD55 Newbie
DonnaD55
  • Author
Posted

AHA! Sheet rock dust! And the compound they use! They all have gluten. If she breathed that in it would get in the back of her thoat and she would swallow it. If that is the case it would explain the elevated antbodies.

It's been a very slow remodel process - and that phase was last March/April.  The the walls have been textured in the last month and that's a spray-on process - would that be something similar?  If so, would it take a long time to get out of her system?

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bartfull Rising Star
bartfull
Posted

Yes, it is the same stuff. (I know because I helped a friend texture his walls a while back). Even though the texture is wet when it is sprayed I am sure the dust got into the air when they were mixing it, and some even when they sprayed. I'm not saying that is the whole problem, but I'm sure if she was in the house when it was being done she would have been affected.

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pricklypear1971 Community Regular
pricklypear1971
Posted

Construction dust - if it happens to be sheetrock spakle or joint compound with wheat in it - it's superfine and gets everywhere!!!!! Not all if it has it in it, but enough does that it's a real threat.

Lets put it this way....it's the equivalent of tossing flour all over your kitchen. Clean the whole house accordingly. I am NOT kidding.

I got into something that sent my dh off when our rental was being remodeled. I had to have it cleaned by someone else and I would not eat in there (I had been taking my lunch, heating up in the micro and using a roll of paper towels I stored there).

The not eating in there (using utensils washed/stored there, paper towels, etc.) solved most of the issue.

I thought I was nuts, but nope. It can happen.

The problem is that it settled everywhere....if this is the problem. She's probably getting it by touching random stuff in the house and then eating - basically the whole house could be cc'd through the air system, etc. I thought I was crazy when it happened to me, but not eating in there solved it. I could be in the house, just not eat in the house....and when I went to eat of go in the restroom and wipe my body down with wet towels and wash with soap up to my elbows. I'd wash my face, too.

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DonnaD55 Newbie
DonnaD55
  • Author
Posted

Wow, thank you so very much!  This had not occurred to me at all.  I will go over everything again - i know there is still dust in some of the drawers.  We have the floor tile going in in another week.  I wonder if the dust from cutting the tile could be the same. 

 

I would like to her to be out of the house while we finish this construction - not sure how to do that yet.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I have no idea about the tile. But *some* if the wall stuff, yep.

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GFinDC Veteran
GFinDC
Posted

Hi Donna,

 

I suggest not eating out for a month to see if that helps.

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DonnaD55 Newbie
DonnaD55
  • Author
Posted

Hi Donna,

 

I suggest not eating out for a month to see if that helps.

 

Hi Donna,

 

I suggest not eating out for a month to see if that helps.

Yes, thanks.  We stopped eating out a couple of weeks ago.  Just can't take any chances at all.

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Nikki2777 Community Regular
Nikki2777
Posted

Hi Donna,

 

I suggest not eating out for a month to see if that helps.

Sounds more like she shouldn't be eating in!

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