I Just Want To Cry

[shan]

Her numbers went higher instead of lower My daughter has been gluten free since march, so that's approx 9-10 months and i thought i was really strict, and i just did more blood work since she is still bloated and has the stomach and her numbers went up!! She won't touch anything that she doesn't recognise even if i tell her it is ok - she is too scared... Please help and tell me what more i can do

My gastro said he's sorry but he's never seen such a case, of a child's numbers going higher after being gluten free, so he can't help

[Offthegrid]

What kind of doctor is that? He can't help? What are we paying these people for?

*deep breath*

Well, I don't have kids. But here are some thoughts:

1. She's getting cross-contamination from somewhere. Possible sources are bakeware, cutting boards, dishes, etc. Maybe the family pet is giving her kisses after eaten its food (which has gluten). Maybe somebody is giving her something when she's away from home and telling her it's OK and it's not. If your household is not gluten-free, cross-contamination could be happening.

2. There's gluten in a food you are regularly eating but you don't realize it. It's a sneaky little devil.

3. She's cheating.

4. Do you take her out to eat anywhere? Maybe she's still getting gluten there, even if they are supposedly "gluten-free" menus it's very, very possible to be cross-contaminated when going out to eat.

Can you think of anywhere else she might be picking up gluten?

[misdiagnosed6yrs]

Her numbers went higher instead of lower My daughter has been gluten free since march, so that's approx 9-10 months and i thought i was really strict, and i just did more blood work since she is still bloated and has the stomach and her numbers went up!! She won't touch anything that she doesn't recognise even if i tell her it is ok - she is too scared... Please help and tell me what more i can do

My gastro said he's sorry but he's never seen such a case, of a child's numbers going higher after being gluten free, so he can't help

I really wish I could help you. I'm too new. I know this is obvious but you need to get another doctor. Have you seen a nutritionist? Have you researched every food that you give her? Thats what I do. I am crazy with the research.

Can you make a list of common foods that she eats and post it for other members to review?

I wish I could help. I hope you find the answers you are looking for. I may end up in the same boat in 6 months and would love to know how you handled the situation.

Good Luck and God Bless

Bobbi

[Offthegrid]

I wanted to add there are some on this board whose numbers went up before going down. Don't despair, but do look for hidden sources of gluten. For instance, a sauce that I thought was gluten-free whose ingredients I read 100 times turned out to have hidden gluten. Grr!

[blueeyedmanda]

I'm wondering if it is CC too, gluten is in play-dough, art supplies, soaps, shampoos....the list goes on...Could it be something like that which is getting overlooked?

[ryebaby0]

Don't give up! There's some source of gluten in her diet (and your doctor is a neenerhead for not suggesting that, and being more supportive). Shampoo, lotion, tums, cereal, flour in the air, prescription meds, Play-Doh, ...there's lots of things it could be. Don't be discouraged we've all been here! Be gluten detectives and get determined to hunt it down and throw it out...

[shan]

Thanks guys - i know i can always talk to you and you'll hear me out and give advice

i was thinking about her diet and cc - i know she won't take a THING from anyone, even her teachers unless i say. SHe is SUPER scared of a reaction - i made her paranoid and i don't regret it

I don't give her playdough, she hardly eats processed food except if it says on the packaging gluten free and she doesn't yet go out to play dates. The creams that i use for her exzema list all the ingredients and it doesn't seem to have gluten, her toothpaste is gluten free, as are her vitamins. But even if it cc, why should the numbers go up? shouldn't it stay the same?!

My gastro told me (sorry just upset with him at the moment so you'll hear me rant about him ) That i should go to a dietician but from what he's heard and the ones he knows, none of them have even heard about celiac!!! I guess that is what happens when you live in israel - they do routine celiac panel on ANYONE that has D, so therefore a very high diagnosis and a very early diagnosis, but gastro has never heard of a good dietician i guess i should be happy she got diagnosed at such a young age (i was also in england, and there i was accused of neglect and was gonna have her taken away!!)

[misdiagnosed6yrs]

Thanks guys - i know i can always talk to you and you'll hear me out and give advice

i was thinking about her diet and cc - i know she won't take a THING from anyone, even her teachers unless i say. SHe is SUPER scared of a reaction - i made her paranoid and i don't regret it

I don't give her playdough, she hardly eats processed food except if it says on the packaging gluten free and she doesn't yet go out to play dates. The creams that i use for her exzema list all the ingredients and it doesn't seem to have gluten, her toothpaste is gluten free, as are her vitamins. But even if it cc, why should the numbers go up? shouldn't it stay the same?!

My gastro told me (sorry just upset with him at the moment so you'll hear me rant about him ) That i should go to a dietician but from what he's heard and the ones he knows, none of them have even heard about celiac!!! I guess that is what happens when you live in israel - they do routine celiac panel on ANYONE that has D, so therefore a very high diagnosis and a very early diagnosis, but gastro has never heard of a good dietician i guess i should be happy she got diagnosed at such a young age (i was also in england, and there i was accused of neglect and was gonna have her taken away!!)

Wow.

Check everything from lotion to hand soap, shampoo, laundry detergent... everything she comes in contact with. Does she wash her hands all the time. I notice that I touch my lips alot. Wiping, licking, scratching, resting my head on my hands... etc. If you do that after someone accidently CC'ed you, you could be putting yourself in danger. I try so hard to keep my hands from my mouth. Do you use chap stick? sorry, she I mean, I am trying to refer to her through you.

It has to be something so walk around your house and like the previous poster stated. be a detective.

Good Luck

Bobbi

[Fiddle-Faddle]

How old is your daughter?

Please don't take this the wrong way, I'm not accusing your daughter of cheating or you of not reading her correctly, but...

My oldest has a celiac friend who is 12. He is now cyber-schooled because he was literally unable to control his own eating of gluten. They found out (after months!) that he was sneaking food from other kids' lunches, either trading for it or outright stealing it. He knew exactly how badly it affected him, he had very severe reactions--but for him, it was like being a cocaine addict in a room where everyone else was flaunting their cocaine in front of him. He couldn't control himself. And he was so ashamed, he lied about it until he got caught, again and again and again.

The other things I am wondering about are :

1) another food intolerance, possibly casein, that is preventing her from healing?

2) is she eating gluten-free oats? I read that avenin, the protein in oats, is molecularly similar to gluten, and some celiacs will react as though it is gluten.

3) another issue--maybe mercury toxicity or Lyme disease complicating things????

[shan]

she does scratch and itch her face a lot, but only coz her hair gets in the way! so its not really near her mouth! We are at the moment doing a gluten challenge on my younger one so hte house is not as gluten free as it was, but i always wash his hands after he eats biscuits and stuff - he's only 14 months so i have to make sure there are no stray cheerios otherwise they end up in the toy box!! Seriously, toys and food NEVER mix, so i am not scared of that. Can laundry detergent, I use persil, really have gluten in it?! And what about baby Johnson products? Do i have to call them all up? On the label it doesn't say anything that could even be related to gluten

My mother in law said, if the diet anyway didn't make her blood better, why don't you just give her a slice of bread tomorrow... Sometime during this long day i was actually thinking of it I figured if she is anyway not better, why bother on this diet... But i know that i would never give it to her knowingly and even if i would have wanted to, she wouldn't have taken it

[blueeyedmanda]

I personally can relate to Fiddle-Faddles reply. In the beginning I cheated, I will not lie. It is like being addicted to something. I think for me it was the reliability on fast foods and easy ways out. I fell off the wagon and got sick again. I hit rock bottom and picked myself up. I am a few years gluten free now. I struggled as an adult....I can only imagine the struggle a child will have in school with others and their gluteny treats.

[shan]

My daughter is going to be three the end of jan, she is in a playgroup in my sister in laws house, and my sil knows what to give. My daughter has been there since before she was diagnosed and she knows, and slipped up once, about 7 weeks into the diet. She does get exzema from dairy, so she is dairy light - when i say that, i mean she has one slice of cheese once every 2 weeks approx. She loves her cheese and she really isn't eating a lot. Also, although i do give her a mulivitamin every day, i am worried about her calcium (even though that's not enough to make a difference).

[lovegrov]

Also check bacterial overgrowth. That can cause you not to recover.

richard

[Cath4k]

I agree with everyone else about checking EVERYTHING, but you might also want to consider those "gluten free" foods. Horrible thought, I know. We have found that we cannot trust them. In our house, we are very reactive to even small amounts of gluten - I am talking "shared production line" amounts. It is really frustrating. In the last 3 months, we have been glutened by gluten-free almond milk, gluten-free rice milk, gluten-free cookies, and gluten-free ketchup. These are all products that are specifically LABELED gluten-free! We have also been glutened by chips and now either tostada shells or refried beans which weren't specifically labeled gluten free, but are supposed to be.

If your dc is as sensitive as our family is, it could be small amounts of cross contamination that keep her body in a high reaction mode.

How frustrating for you - I'm sorry! I hope you figure it out!

Blessings,

Cathy

[Fiddle-Faddle]

Catch 22-- I would suggest yogurt to help with bacterial balance in the tummy, but if she is eating dairy (even a small amount), I think that could be preventing healing, as well as the bacterial overgrowth that richard suggests.

Maybe someone here can suggest a good probiotic for a 3-year-old?

And some of the dairy-free milks DO contain unlabeled gluten. The law allows them to label themselves as gluten-free if they have less than 20 ppm, I think. Rice Dream does use barley enzymes--barley contains gluten, but they just fall under 20 ppm, so they lie and label themselves as gluten-free when they are not.

Also, Rice Krispies and Corn Flakes do contain gluten--don't know if you already knew that. It took me MONTHS to figure that one out. Also, some deli meats, and deli tuna salad and chicken salad often contain bread crumbs and or wheat starch to "stretch" things out, absorb extra mayo, etc.

And cheerios are not gluten free, but I bet you already knew that!

[Rachel--24]

Is she still symptomatic as well??

If you're certain its not from CC then I would check into gut infections..bacteria, yeast or parasites can all prevent healing. Parasites are very difficult to diagnose but as many as 85-95% of people have them...with or without symptoms.

[vanillazeis]

Her numbers went higher instead of lower My daughter has been gluten free since march, so that's approx 9-10 months and i thought i was really strict, and i just did more blood work since she is still bloated and has the stomach and her numbers went up!! She won't touch anything that she doesn't recognise even if i tell her it is ok - she is too scared... Please help and tell me what more i can do

My gastro said he's sorry but he's never seen such a case, of a child's numbers going higher after being gluten free, so he can't help

I know this has already been mentioned, but my daughter first became dairy intolerant, and just recently became soy intolerant. She has the same Bloated belly, extremely gassy, throwing up "celiac reaction" that she does to gluten, so im sure its damaging her intestines as well. We go back for our followup bloodwork in January, im dying to know what her numbers are. Watch out for additional intolerances.

[Juliet]

Shan -

you brought up a question that shouldn't the numbers remain the same and not go up, the answer is not necessarily. The longer someone with Celiac Disease is regularly exposed to gluten, whether in large or small amounts, the higher the number goes up. It may go up faster with large amounts, but it still goes up. As it was explained to me, people with Celiac Disease always have these little receptors that hang out in the small intestine and are waiting for gluten. The more gluten you get, the more receptors you develop. And when these receptors receive gluten, they become the "numbers" that these blood tests look for, which triggers the negative autoimmune response. So, each time someone is exposed to gluten, more of these receptors remain and wait around for gluten. Therefore as someone with Celiac Disease goes along through the years, even when being extremely strict with the diet, they become more sensitive to gluten than ever. And once activated, it takes quite awhile before these receptors become "deactivated". So, small amounts, just slightly more than 20 parts per million, ingested on a regular basis can make someone's numbers go up once they have Celiac Disease. And this amount, unfortunately, can easily be attributed to the fact that you're having a gluten challenge with your other child. My son had a massive reaction to gluten a couple of months ago and all we could think of was because he sucked his thumb at pre-school when he was hurt and had not washed his hands first. It wasn't from crumbs, or picking up someone's food, or playing with play-do. It was from first touching the playground equipment and wiped down table after other kids ate gluten products before these same kids touched the other things.

And like everyone else has suggested, check again on your products. Tocopheryl acetate (which is vitamin E) can often be a problem in lotions, soaps, etc. Here in the states, they don't have to list the source, and often it's from wheat. Putting some on your hands then handling food for your child can be enough to set the body off (something I learned from first hand experience).

[Cam's Mom]

Hi!

I second the dang tocopherol acetate (vit. e). That's what got us. There are many sources for vit. e it can be from soy, coconut, etc. but can also be from wheat.

We had a bottle of "pure" vit. e. oil. That's all it said on the label and we were using it to soothe our daughter's very sore chapped upper lip and nose when she had colds and during the winter. Well guess what? When her numbers also were not coming down and I was totally ripping my hair out - I started calling every company, cat litter, baby wipes, you name it, I called them, just going nuts. Well finally get to the vit. e. oil and it turns out that there is only one ingredient pure 100% wheat germ oil! Yikes - we were liberally applying gluten directly to the child's mouth (and especially at bedtime when she sucked her thumb - oh and let's not forget occasionally putting it on the chapped hands!). Ughhh!

And it is very hard to find a chapped stick that does not contain tocopheryl acetate. Again not all vit. e is wheat but it is impossible to know without calling.

It is just so insidious. You are working hard and doing a good job and I know that if you say your daughter isn't "cheating" or "sneaking" she's not - there is just probably some totally obscure bizarre source you have not identified.

We sat down with a pen and paper and made a list of every single thing the kid eats, touches, plays with, comes in contact with. Then we made another column of naturally gluten-free, labeled gluten-free, verified, or questionable. Then we set out calling on anything questionable and on some things that she used every day (like peanut butter) we just switched brands to something that was verified or labeled gluten-free.

Good luck - you will find it!!

barb

[shan]

Thanks, my last post somehow never got in - that was a couple of days ago. I never thought to check for vitamin e, although i never use had creams, nor any other lotions, and its not in any shampoo or any of her stuff...

BUT i am going to check in to this probiotic stuff for her. Anyone know of a good probiotic for a 3 year old? She has had recurring yeast infections, and if you say that could be the reasons that her numbers are still high, then i don't feel so bad anymore

[home-based-mom]

Hi!

I second the dang tocopherol acetate (vit. e). That's what got us. There are many sources for vit. e it can be from soy, coconut, etc. but can also be from wheat.

We had a bottle of "pure" vit. e. oil. That's all it said on the label and we were using it to soothe our daughter's very sore chapped upper lip and nose when she had colds and during the winter. Well guess what? When her numbers also were not coming down and I was totally ripping my hair out - I started calling every company, cat litter, baby wipes, you name it, I called them, just going nuts. Well finally get to the vit. e. oil and it turns out that there is only one ingredient pure 100% wheat germ oil! Yikes - we were liberally applying gluten directly to the child's mouth (and especially at bedtime when she sucked her thumb - oh and let's not forget occasionally putting it on the chapped hands!). Ughhh!

And it is very hard to find a chapped stick that does not contain tocopheryl acetate. Again not all vit. e is wheat but it is impossible to know without calling.

barb

There are protein molecules in the oil?

1) That doesn't sound very pure to me!

2) Why, if wheat is the source, is it not required to list it as such?

[SandraD1971]

I would agree that perhaps there is another food alergy - perhaps corn? Any chance you can try to restrict diet to remove corn or other common alergies and grandually reintroduce?

Did you call all food products that are not specifically labelled as gluten free? They could have cross contimination - natural or artificial flavors often contain gluten so be careful with those less obvious foods.

[jen2be2]

ykes, the vit E is news to me too. I will have to call on my brand tomorrow.

You also might want to check the brand of napkins, soaps and papertowels.

[Juliet]

"Why, if wheat is the source, is it not required to list it as such? "

The new labeling laws apply only to food, so lotions, soaps, make-up, etc. are excluded. In fact, I don't even think that it applies to medicine since pharmaceutical companies are not "food manufacturers" which is what the law actually applies to.

And oil is not distilled like alcohol is, so I believe the protein structure remains in tact.

[jannel]

Did anyone know if Persil laundry soap is gluten-free? tried to read the box but it is in German. Maybe I should check the UK sites. I'll post it is if I find out.