What Are We Missing?

[The Mama]

Hi all! I'm a new member. I have an 11 year daughter that was diagnosed in June with Celiac Disease. She's been on a gluten free diet ever since. We had her retested last week because we noticed she started losing her hair again (hair loss is what brought us to her diagnosis-no other symptoms). Her level was the same as it was initially. We have been so diligent about buying gluten free food, reading labels, cross contaimination, etc. I'm so disappointed and just trying to figure this out. Any thoughts would be appreciated. Thanks!!!

[christian.808]

My heart goes out to you MAMA. I have an aunt who has this disease. She goes up and down. That was one of her problems as well. Hair loss. With her being older she just puts wigs on. I don't know much about this disease at all. I will be looking forward to others responses so I can get some knowledge as well on this disease. Please try to keep your head up. My prayers are with your family.

[ShayFL]

Is she getting gluten at school?

[happygirl]

Did she have a biopsy to confirm and has she had a follow up biopsy?

[gfpaperdoll]

I think that you will find that for the most part having a mixed kitchen does not work, especially for a child. At least that is what my friends have concluded, It usually takes them about a year to get to that decision. IMO, A child should have a safe place to be where they can eat anything that is there. Can other members of the family just eat their wheat things outside the home?

Also, if you just replaced all her gluten foods with the same version gluten free. That will not work for people that need to heal. Too many grains & IMO the gluten free grains are somewhat CC & some of us cannot tolerate them.

She should be getting extra special lunches for school. All her favorites, does she like shrimp? How about a shrimp cocktail lunch with veggies & homemade corn chips. If her lunches are a reward to her, then she is not as likely to cheat. Maybe once a month, pack a special lunch for two, so she can invite a friend to eat with her. Do things so that she is special & noooooone of the other kids' moms do it...

I guess you are using gluten-free shampoo & soaps etc? I knwo she is young but is she using lip gloss, sharing lip gloss at school???? it has to be gluten-free What about your make up & hand lotions?

[Fiddle-Faddle]

I totally agree with gfpaperdoll.

You might try posting her typical days' menu--maybe someone here can spot something?

Also, if she is on any medication or multivitamins--those can often contain wheat starch.

Gluten can be hidden in the most unlikely places: deli tuna salad (bread crumbs), roast chicken (marinated in soy sauce), "lite' ice creams (wheat starch), Rice Krispies and Corn Flakes (malt), salad dressings, etc.

[jzmom]

I have an 11 year old so I can relate to the age. Lunch time is a very social time of the day for the kids and my son gets picked on a bit because of some of the odd things I make for him to eat while the rest of the kids are eating pizzas and nuggets. I purchased a Food Saver so I could vacuum seal meals for him; it vacumes right on the paper plate so you can microwave. I

[The Mama]

Hi again. I appreciate all of your responses. Truly! I've thought of little else since getting the "news" that her diet modifications have basically been a waste for the past 5 months. I'll try to touch on a bit of what each of you mentioned. Yes, she was biopsied to confirm the diagnois. Originally, I brought Alex to the Dr. because we noticed the hair loss. Dr. did blood tests for a variety of things and positive results suggestive of Celiac came up. We were then referred to the GI and had the endoscopy which confirmed Celiac. It seems her hair started growing back in the area where she had lost it so we were hopeful but then recently noticed loss in a different area on her head which is what prompted us to retest. Is she getting gluten at school? I don't believe so. I send her lunch and if she buys anything it is fruit or maybe a popsicle. She's SUPER careful about checking ingredients. I'm very confident that she is not cheating because she is so careful almost to the point of paranoia. Hair loss for an 11 year girl is plenty of incentive. She does not use lip gloss. As a side note: health issues are not new to her. She has a congenitive heart defect, tricuspid atresia, has had 2 heart surgeries, several heart catheterizations and spinal surgery for a tethered cord. I've also thought about the gluten free kitchen, HOWEVER, I also have a 9 year old daughter who is what I call a "carb hound." I don't think it's fair to restrict her diet because of Alex's restrictions. I have now designated a "counter" in the kitchen specifically for Alex and her food preparation. I've been considering a separate microwave too and wondering if this has been a source of cross-contaimination??? Thoughts on that? She also uses the micro at school. I will now list some foods that Alex eats regularly: Breakfast, most days rice or gluten free hot dog (she's never been a "breakfast food" girl). She usues ketchup, mustard and vinegar (not balsamic, which used to be her favorite). Lunch: She'll take Thai Kitchen Pad Thai (instant rice noodels/sauce), which is labeled gluten free, a bag of ACT II pop corn, a fresh fruit, a FruitaBu (organic smoosed fuit flat), marshmallows (mofified CORN starch), sometimes celeray and cream cheese. Frozen fries are a big snack for her or baked potato. Dinner I cook gluten free. Meat or fish, veggie, potato or rice pasta. She eats a lot of Amy's gluten free mac and cheese. She LOVES that. She does take Lisinopril and aspirin for her heart. Uses crest toothpaste, receives flouride at school, VO5 shampoo. Doesn't condition her hair because it's so fine. I appreciate your input so much and sorry it seems I wrote a book. I look forward to further thoughts.....

[Fiddle-Faddle]

She receives fluoride at school? What is this for?

I wonder about fluoride poisoning? Fluoride is apparently banned in the water supply in most industrialized nations--except for America.

See:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There are many, more sites--these were just the first few that popped up.

[Steve Glutenberg]

Breakfast, most days rice or gluten free hot dog (she's never been a "breakfast food" girl). She usues ketchup, mustard and vinegar (not balsamic, which used to be her favorite). Lunch: She'll take Thai Kitchen Pad Thai (instant rice noodels/sauce), which is labeled gluten free, a bag of ACT II pop corn, a fresh fruit, a FruitaBu (organic smoosed fuit flat), marshmallows (mofified CORN starch), sometimes celeray and cream cheese. Frozen fries are a big snack for her or baked potato. Dinner I cook gluten free. Meat or fish, veggie, potato or rice pasta. She eats a lot of Amy's gluten free mac and cheese. She LOVES that.

Hi there - my husband and I both have Celiac, so I will try to comment on the things that stood out to me as possibilities. Reading through your list, here are my thoughts:

1. What brand of gluten-free hotdog? My husband loves hotdogs, and he has tried a few that did not indicate any gluten ingredients, but still glutened him. Hotdogs are kind of the mother of all processed foods...so lots of room for contamination. I would use the search box on this website to check the specific brand of dogs you use. Make sure others have not reported getting glutened by them.

2. What brand of vinegar? The most common type of vinegar is made from gluten grains, and vinegar shows up on lots of lists for containing gluten. Many Celiacs won't eat any vinegar, or they'll only eat rice or grape-based vinegars. Others will eat vinegar if it says "distilled vinegar" and does not contain malt. Personally, if I were getting glutened in a mysterious fashion, I would switch to a rice vinegar that has been recommended on this board.

2.5 Does anyone else use the ketchup and mustard? Are they squeeze bottles or jars? If they're jars, get her her own squeeze bottles. If they're squeeze bottles, does anyone in the family touch the bottle to the bread/hotdog bun when applying condiments? If so, time to get her ones that are just for her.

3. FruitaBu should be okay - I used to eat them a lot when I was initially healing up.

4. What type of frozen fries? I had to stop eating Alexia fries - to be fair, they did say they were made in a facility with wheat...I was just hoping they would be fine. After a couple of bad times, I switched to Cascadian Farms. How do you heat them up? Is it on a cookie sheet by any chance? I glutened myself really badly by cooking gluten-free things on my old cookie sheet. Now I line it with parchment paper, and it works fine.

5. Dinner - the rice pasta stands out as a potential source of in-home cross contamination. Are the dishes, boiling pan, strainer/colander and serving utensils used for the rice pasta ones that have always been gluten-free? If not, I'd switch them to dedicated versions. I initially thought that replacing my pans was ridiculous, but after getting glutened by my cookie sheet, I became a believer. I took steel wool to my metal boiling pans and kept them. I use paper liners for cupcakes and parchment paper for cookie sheets, and I never overfill the cupcakes so they don't run over the paper cups while they bake.

6. Random thoughts--there's no soy sauce in play anywhere, is there? What about Kraft shredded cheese? (I know it's not supposed to contain gluten, and maybe it doesn't, but my husband and I cannot eat Kraft shredded cheeses, just the block kind.) What about chocolate and sweets? What brands is she eating? Maybe people here will know if there are any issues.

Lastly, big hugs!!! You're doing a good job! Don't give up....it IS hard, but I initially glutened myself about once a week....then after several months it was once a month....more recently it has been less frequent than that. This past weekend I took a chance and ate a frozen meal (Taste of India?) with no gluten ingredients, and it got me. I don't always know why. I definitely believe the processed food industry has a long way to go before I will be able to trust foods that are not processed in a gluten-free facility.

Speaking of which, and I understand your choice....your kitchen is not a gluten-free facility. I think it's a good, helpful (not excessive) idea to give her a dedicated area of the kitchen, dedicated pans, toaster, etc. It is very hard to understand why something as tiny as a crumb can cause symptoms, but it can. Celiac sensitivity arises from the part of the immune system that is dedicated to fighting viruses. When was the last time you saw the virus that caused your cold? How much of a virus does an immunization contain? Not much...but it is effective in potentiating the immune system. So if you can picture your daughter entering a kitchen covered with viruses, trying not to "catch" anything, that is a more helpful mental picture than, does the counter look clean?

The Amy's mac & cheese is usually okay for me. Every once in a while, I get a slight headache (one of my warning symptoms) after eating it, but I have never gotten outright sick from it. And it does make life a little brighter to have mac N cheese.

Ask your daughter if she has ANY other symptoms besides the hair loss. Does she get itchy elbows, or a mild stomach ache the following morning, or headaches, or mouth sores? If not, that's great....but if so, those could be helpful warning symptoms that she could use to her advantage to tell her when her diet needs work.

Whenever I start having minor problems from foods, I cut back to a very pure diet. "If I can't rinse it, I don't eat it" becomes my rule for a few days until I start to feel better. That way, when I reintroduce suspect foods, it usually becomes clearer which one or ones were causing the problem.

It sounds like you and she have a lot on your plate. Hang in there - you're doing a good job, Mom. Celiac can cause so many issues later in life, especially for girls. Don't blame yourself, but don't give up. Apply some new scrutiny and then ask to have her tested again in 3-6 months. You need the feedback to help you know.

HA! Edited to remove my real name, since I accidentally posted this under my humorous alter ego.

[darkmindead]

Im going to go really off topic here just to throw this out there for you that there is a childhood ( well most commonly ) disorder that causes hair loss from stress. Its called alapcia ( sp?) If you googled it you would probably find some info but it may not just be the gluten that is causing it just to give you some other ideas Good Luck!

[The Mama]

Im going to go really off topic here just to throw this out there for you that there is a childhood ( well most commonly ) disorder that causes hair loss from stress. Its called alapcia ( sp?) If you googled it you would probably find some info but it may not just be the gluten that is causing it just to give you some other ideas Good Luck!

Thanks for that! We've already considered that and have been to a dermatologist. Not to say that it's not that too, but the docs are now blaming Celiac for the hair loss.

[Fiddle-Faddle]

Alopecia can be a symptom of celiac. Alopecia means hair loss; the cause is unspecified and can be from many different things, including diet, stress, and (as listed in links above) fluoride.

[The Mama]

Hi there - my husband and I both have Celiac, so I will try to comment on the things that stood out to me as possibilities. Reading through your list, here are my thoughts:

1. What brand of gluten-free hotdog? My husband loves hotdogs, and he has tried a few that did not indicate any gluten ingredients, but still glutened him. Hotdogs are kind of the mother of all processed foods...so lots of room for contamination. I would use the search box on this website to check the specific brand of dogs you use. Make sure others have not reported getting glutened by them.

2. What brand of vinegar? The most common type of vinegar is made from gluten grains, and vinegar shows up on lots of lists for containing gluten. Many Celiacs won't eat any vinegar, or they'll only eat rice or grape-based vinegars. Others will eat vinegar if it says "distilled vinegar" and does not contain malt. Personally, if I were getting glutened in a mysterious fashion, I would switch to a rice vinegar that has been recommended on this board.

2.5 Does anyone else use the ketchup and mustard? Are they squeeze bottles or jars? If they're jars, get her her own squeeze bottles. If they're squeeze bottles, does anyone in the family touch the bottle to the bread/hotdog bun when applying condiments? If so, time to get her ones that are just for her.

3. FruitaBu should be okay - I used to eat them a lot when I was initially healing up.

4. What type of frozen fries? I had to stop eating Alexia fries - to be fair, they did say they were made in a facility with wheat...I was just hoping they would be fine. After a couple of bad times, I switched to Cascadian Farms. How do you heat them up? Is it on a cookie sheet by any chance? I glutened myself really badly by cooking gluten-free things on my old cookie sheet. Now I line it with parchment paper, and it works fine.

5. Dinner - the rice pasta stands out as a potential source of in-home cross contamination. Are the dishes, boiling pan, strainer/colander and serving utensils used for the rice pasta ones that have always been gluten-free? If not, I'd switch them to dedicated versions. I initially thought that replacing my pans was ridiculous, but after getting glutened by my cookie sheet, I became a believer. I took steel wool to my metal boiling pans and kept them. I use paper liners for cupcakes and parchment paper for cookie sheets, and I never overfill the cupcakes so they don't run over the paper cups while they bake.

6. Random thoughts--there's no soy sauce in play anywhere, is there? What about Kraft shredded cheese? (I know it's not supposed to contain gluten, and maybe it doesn't, but my husband and I cannot eat Kraft shredded cheeses, just the block kind.) What about chocolate and sweets? What brands is she eating? Maybe people here will know if there are any issues.

Lastly, big hugs!!! You're doing a good job! Don't give up....it IS hard, but I initially glutened myself about once a week....then after several months it was once a month....more recently it has been less frequent than that. This past weekend I took a chance and ate a frozen meal (Taste of India?) with no gluten ingredients, and it got me. I don't always know why. I definitely believe the processed food industry has a long way to go before I will be able to trust foods that are not processed in a gluten-free facility.

Speaking of which, and I understand your choice....your kitchen is not a gluten-free facility. I think it's a good, helpful (not excessive) idea to give her a dedicated area of the kitchen, dedicated pans, toaster, etc. It is very hard to understand why something as tiny as a crumb can cause symptoms, but it can. Celiac sensitivity arises from the part of the immune system that is dedicated to fighting viruses. When was the last time you saw the virus that caused your cold? How much of a virus does an immunization contain? Not much...but it is effective in potentiating the immune system. So if you can picture your daughter entering a kitchen covered with viruses, trying not to "catch" anything, that is a more helpful mental picture than, does the counter look clean?

The Amy's mac & cheese is usually okay for me. Every once in a while, I get a slight headache (one of my warning symptoms) after eating it, but I have never gotten outright sick from it. And it does make life a little brighter to have mac N cheese.

Ask your daughter if she has ANY other symptoms besides the hair loss. Does she get itchy elbows, or a mild stomach ache the following morning, or headaches, or mouth sores? If not, that's great....but if so, those could be helpful warning symptoms that she could use to her advantage to tell her when her diet needs work.

Whenever I start having minor problems from foods, I cut back to a very pure diet. "If I can't rinse it, I don't eat it" becomes my rule for a few days until I start to feel better. That way, when I reintroduce suspect foods, it usually becomes clearer which one or ones were causing the problem.

It sounds like you and she have a lot on your plate. Hang in there - you're doing a good job, Mom. Celiac can cause so many issues later in life, especially for girls. Don't blame yourself, but don't give up. Apply some new scrutiny and then ask to have her tested again in 3-6 months. You need the feedback to help you know.

HA! Edited to remove my real name, since I accidentally posted this under my humorous alter ego.

Thanks for taking the time to respond. Interesting thoughts! The name of the gluten free hot dogs escapes me at the moment. There're in the natural casing and it is on the label "gluten free." It begins with a "K".......

Alex uses Marukan Rice Vinegar. Ore Ida french fries..... I'm assuming Heinz ketchup and mustard are safe - will get separate containers for her use. We do have separate margerine for her and peanut butter....

I have been boiling her rice pasta in the same pan that we use but will try getting a new one and see what that does.

She doesn't use shredded cheese, I buy the block and shred for her....

She also uses A-1. Do you believe that is safe? Judging by the ingedients I would think it is.....

Have stayed away from soy sauce, but I've been curious what the ingredient in it is gluten??? Can you shed some light on that for me? Did you have any thoughts about the microwave issue?

Again, I appreciate your time!!

[The Mama]

Thanks for taking the time to respond. Interesting thoughts! The name of the gluten free hot dogs escapes me at the moment. There're in the natural casing and it is on the label "gluten free." It begins with a "K".......

Alex uses Marukan Rice Vinegar. Ore Ida french fries..... I'm assuming Heinz ketchup and mustard are safe - will get separate containers for her use. We do have separate margerine for her and peanut butter....

I have been boiling her rice pasta in the same pan that we use but will try getting a new one and see what that does.

She doesn't use shredded cheese, I buy the block and shred for her....

She also uses A-1. Do you believe that is safe? Judging by the ingedients I would think it is.....

Have stayed away from soy sauce, but I've been curious what the ingredient in it is gluten??? Can you shed some light on that for me? Did you have any thoughts about the microwave issue?

Again, I appreciate your time!!

[Rook's Mommy]

Our son had a reaction to our shampoo. When we went gluten-free I called the company and it was safe. A year later or so he started reacting again. I couldn't for the life of me figure it out. Turns out they changed the formula. Every time he had a bath he got glutened. We all use Califonia Baby now and haven't had a problem. Just a thought.

[sbj]

Is the aspirin gluten-free? "Sometimes drugs or other intakes may be contaminated with gluten that may continue sensitization."

Not sure but I believe there are some who always register positive via blood tests even when eliminating gluten entirely. Did your daughter have an endoscopy for diagnosis? If so, she could have another one now for comparison purposes to see if there has been improvement.

It sounds as if she may be getting a small amount of gluten on a daily basis. Suppose those marshmallows have just a tiny bit of cross contamination. If she eats them a few times a week that might be all it takes to set off her immune system. For some, daily cross-contamination in microscopic amounts can be enough. Your daughter might want to try rotating everything - switch to a different brand mac and cheese, marshmallows, hot dogs, etc. Or she might want to stop eating processed foods altogether.

Do any of the processed gluten-free foods she eats come from equipment that also proceses wheat? It is my understanding that Amy's foods are gluten-free but there is definitely the possibility of cross-contamination. "At Amy's we take every precaution to ensure that cross contamination of ingredients does not occur in our production facility but we want you to know that this product was produced in a plant that processes foods containing wheat, milk, soy, tree nuts and seeds."

Might the hair loss be unrelated to celiac disease? Perhaps stress?

Best of luck and don't lose hope. Keep us up to date and provide some more of the foods she eats.

[kbtoyssni]

Most soy sauces have wheat as a filler.

Does the floride have any flavoring that could contain gluten? I seem to remember flavored floride from when I was a kid.

Your other daughter - has she been tested? Being a carb addict was a red flag to me. Many celiacs were carb addicts because of its addictive properties.

[cyberprof]

Your other daughter - has she been tested? Being a carb addict was a red flag to me. Many celiacs were carb addicts because of its addictive properties.

I STRONGLY agree with this - all first degree relatives should be tested anyway, but especially with carb cravings. I was the original carb addict and could have eaten only pizza and french bread all day long, everyday.

And for the health of one daughter, the other (and other family members) might have to give up gluten at home in order to get the celiac healthy. The impact of not being truly gluten-free might be life-long - the hair might just be the only symptom of damage.

I have been terribly glutened by microwaves. If her food isn't covered in a shared microwave (especially at school) that could be it right there. And I use the Thai noodles too for lunch- they're great. But where is the boiling water coming from? If it is from the microwave that is really bad too. I use a covered pyrex dish, or cover completely with plastic wrap with only one or two small vent holes. Or a tupperware that has a small vent. That might be too complicated for her to handle at school.

You could try putting leftovers in a thermos instead of using the microwave. I pre-heat my son's thermos with boiling water, let it sit a minute and then add hot noodles, hot soup or hot chili. Stays warm/hot until lunch. Mac-n-cheese would work too. You could use Amy's or Annies, which has a gluten-free version (like Kraft Mac-n-cheese).

Have you called the pharmacy and gotten the manufacturer's name to call them about gluten in her Rx? I always call, each time I get a new bottle.

Amy's should be ok. Try Trader Joes for gluten-free hotdogs. The popcorn should also be ok in the microwave, as the steam goes out, not in.

You should be able to find treats for her lunch that look "normal" and that the other kids won't look at twice. Envirokids bars are cereal bars that look normal. Try home-made Rice Chex mix (check the Rice CHex box to make sure you're getting a new gluten free version) with peanuts, small sesame crackers etc. Use gluten-free soy sauce. La Choy is gluten-free, or look for San-J brand wheat-free tamari in specialty stores or larger grocery stores - it tastes the same as regular soy sauce.

I think some people have taken over a year to get their numbers down, so if you double-triple check everything it still might take time. That is the very frustrating part of celiac. I wish your daughter and whole family good health!

~Laura

[Fiddle-Faddle]

I still think she might be losing her hair from the fluoride. How MUCH is she getting, and why is she getting it at school?

Please do some research on fluoride poisoning. Especially if she is already drinking fluoridated water, extra fluoride could be a real problem.

I'm assuming she has tooth enamel problems due to celiac ? That's common amongst celiacs.

[The Mama]

I still think she might be losing her hair from the fluoride. How MUCH is she getting, and why is she getting it at school?

Please do some research on fluoride poisoning. Especially if she is already drinking fluoridated water, extra fluoride could be a real problem.

I'm assuming she has tooth enamel problems due to celiac ? That's common amongst celiacs.

We live in a rural community and have well water. The school offers a fluoride rinse once a week. Because we don

[The Mama]

We live in a rural community and have well water. The school offers a fluoride rinse once a week. Because we don

[Marie2375]

Check the flouride! I don't know about rinses, but our dental hygienist said that the gel they use DOES contain gluten.

[The Mama]

Check the flouride! I don't know about rinses, but our dental hygienist said that the gel they use DOES contain gluten.

Thanks! Will check with the hygienist next time she goes. She does get a flouride treatment there every 6 months. I believe it's a foam. Appreciate the thoughts!! Keep me comin!