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Help-What Are We Doing Wrong?

Flores

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Flores Newbie
Flores
Posted

My daughter (17) was diagnosed with celiac approx. three months ago. We have been very careful to read labels and have her eat gluten free. Doctor had her blood rechecked. At diagnosis her transglutaminase tTG IgG was 30 and this time it is 35. (norm suppose to be 0 - 5) So what could possibly be going wrong if we are scoring worse than before we even started the diet. We are very discouraged. Any advise is welcome.

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kareng Grand Master
kareng
Posted

Having a 15 & 18 year old - are we sure she isn't cheating when parents aren't looking? Or even, just misjudging what is OK away from home? My 15 year old has a friend with celiac disease that thinks it's Ok to take the burger off the bun, etc.

Also, has she checked all her soaps, lotions & beauty products? If you use your fingers to put the lotion on your legs, the lotion sticks on your fingers. Fingers touch food.

Cover Dad's eyes for this one-

Is she kissing someone who has gluteny food in his mouth or lips?

rosetapper23 Explorer
rosetapper23
Posted

Is she not using a gluten-free shampoo? Does she wear lipstick or chapstick that isn't gluten free? Does she share tools or equipment with students or friends who eat gluten and perhaps haven't washed their hands? I assume that, as a high school student, she's moving from classroom to classroom and placing her hands on each desk where she sits. Cross-contamination is quite possible.

T.H. Community Regular
T.H.
Posted

My daughter (17) was diagnosed with celiac approx. three months ago. We have been very careful to read labels and have her eat gluten free.

So, a few questions:

1. When you read the labels, what are you looking for? Do you find gluten free products, or do you look for gluten ingredients only? Many foods that have no gluten ingredients are actually not gluten free, sadly. They can get gluten cross-contamination from nearby machines, from workers, from the fields where ingredients were grown, etc... If you have just been looking at ingredients, you may want to hunt down some products that state they are gluten free, instead.

2. How much processed gluten-free food is your daughter eating? Gluten free is actually just a legal label, stating how much gluten a product can still have and be labeled gluten free. Processed food is more likely to have slightly higher amounts of gluten in them (still very small, but more than, say, an apple would). As a result, if your daughter eats a lot of gluten-free processed foods, she might actually be getting more gluten than she can tolerate. Dropping some of these and switching to whole fruits, veggies, meats and such might help with that.

3. How do you deal with gluten cross contamination in your home? Does your daughter have a separate cutting board and pot/pan for her to use? Does she have her own wooden or plastic spoons/bowls, if she uses those materials? Wood and plastic are porous to gluten and can release it back into another food, even after washing. Even if you wash in the dishwasher - the hot water there kills germs, but it doesn't destroy gluten (soap and water does it, but it can't get it out of all crevices or out of porous material). If you share pots or pans and they are not scrubbed out, sometimes residue can remain that can contaminate her food next time, too.

4. Does she have a gluten free set of condiments that she doesn't share with anyone who eats gluten? Does she have a dedicated area to make her gluten-free food so no crumbs or gluten dust can touch her food? Does she have gluten free chapstick/lipstick? Does her boyfriend have gluten-free chapstick or brush his teeth before they kiss? Does she bite her nails? If so, she needs gluten free lotion, nail polish, etc...

This early on, it's usually gluten contamination sneaking in somewhere - very hard to avoid when we're trying to figure it all out!

Good luck!

glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted

It seems as though gluten hides everywhere, even licking an envelope to seal it has glutened me (little did I know....). I have been gluten free almost 2 years and look at every label, everytime, and still get glutened occasionally from cross contamination. Hope you figure it out! Good luck!

Mizzo Enthusiast
Mizzo
Posted

Toasters and colanders are big sources of CC unless they are replaced and used strictly for gluten-free foods only. I also found my butcher block knife holder filled with crumbs and replaced it as well. Any jar you put a knife , spoon or fork into should of been replaced when she was diagnosed if both gluten-free and non-gluten-free use them. People debate on this one but.. have you replaced very scratched teflon pans.

The packaged foods are big culprits. what are her favs that she eats the most? post the list . Most likely people on the forum can tell you if they are safe or not based on research. I have found reaction to be more reliable than ingredient list sometimes, unfortunately.

BTW why were your blood counts done at 3 months ? We were told to wait at least 6 months for a recheck, was it because her symptoms worsened? It seems early, just wondering!

dilettantesteph Collaborator
dilettantesteph
Posted

It might just take some time for the numbers to go down.

She could be a super sensitive celiac. I didn't even know that category existed when I was first diagnosed. Some of us react to much lower levels than others. If that's the case she will need to watch everything, be in a gluten free home and not eat processed foods.

You may just need to be a bit more careful. Just thought you might like to be aware of the possibility because I wasn't for many months of struggle.

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Leah's Mom Rookie
Leah's Mom
Posted

I totally feel your frustration. Many shampoos have wheat germ or some other gluten . . . my daughter had a horrible reaction for about a month, and we finally figured out it was because we switched shampoos and it was dripping down her face when she rinsed it out. We went back to suave naturals. Is her toothpaste gluten free? During dental proceedures does she make sure she's asking for gluten free products? Malt flavoring is a huge culprit here. What about perfume? Also soaps, lotions, face products, make-up all need to be gluten free too because kids sweat and it can drip onto the lips. Is she taking any meds that could contain gluten? (even most over the counter products contain gluten). We learned this the hard way too. Hope you get it figured out!

-Marcie

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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