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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

"my Kids Can't Have Gluten So I Have To Get Whole Wheat Spaghetti For Them"
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26 posts in this topic

So I'm new here. My sister has decided that her kids, the two SHE gave birth to, not her stepkids, are gluten sensitive.

I'll try to keep this short and near the point. She was anorexic in high school until our parents started "hounding" her and then she became bulimic. She survived that, only to still barely eat anything. I should note at this time that women in our family are not typically heavy at all.

On to her kids, HER two kids, the other two are fine. (A little bitterness here as she tends to treat them a little different.) She decided that they were gluten sensitive since they have tummy aches. She had them tested and it came back negative. She decided to put them on a gluten free diet. Ok. Two years later I'm getting close to mastering the gluten free cooking. It took some practice, but I won over the "Gluten-free is taste free" crowd at Thanksgiving. The look on my neice's face was priceless when she asked me which were the ones she could eat and I told her everything.

She started homeschooling the kids this year and apparently their lunch, everyday, is peanut butter, yogurt, and a banana.

I can't count the times I've heard the youngest one ask for more, be told no and then hear "but Momma I'm still hungry."

The last time she took them to the doctor, she was told they were underweight. They do look like they're getting too thin.

Oh yeah and I forgot to mention that when they were babies, if they didn't poop when she thought they should, she was always quick to give them laxatives or even suppositories. Which causes me to worry that maybe she messed with their natural development, which in turn caused their tummy aches.

And finally, does this not sound like she is pushing her eating disorder onto her children? I won't even get started on my Munchausen by proxy theories.

Oops. One more thing that originally sent me here in the first place. She preaches at every family function that her kids can't have anything with gluten. She insists that everyone change how they cook for her two girls. However she serves them whole wheat pasta and whole wheat tortillas. Does this not contradict the gluten-free diet she supposedly has them on? I think she's crazy, but I'm crazy for all my neices and nephews and if cooking gluten-free makes life easier and better for those two, I'll go all out, but does she sound crazy or what?

(First post to a forum ever) Apologies for any spelling or grammatical errors, Thanks for reading!

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This is really really an unfortunate situation. I think your sister is confused and she might not even realize it. It is possible that gluten is giving her children problems but I wonder why she doesn't realize wheat pasta and wheat tortillas have gluten. Is it because it's not white and she is associating white bleached flour to gluten and not whole wheat?

In a sense it does sound like your sister may be passing off some of her issues to her children which is not uncommon. However, there is very little family can do without alienating the family member completely.

I do undersatnd your frustration and feeling of helplessness in this situation.

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annonymously report her for child neglect.

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Have you asked her about the whole wheat stuff? What did she say? What does the

Dad say?

You may have to report them. If you know who the pediatrician is, you might talk to him/ her.

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I think you're right to be worried about the kids. if they were overweight I could see limiting their calories, but that doesn't sound like the case here?

Serving whole wheat would ge better nutritionally and on the glycemic index scale, for blood sugar control..but makes nO sense to serve to kids that are supposed to be gluten-free.

In fact, I've always wondered if whole wheat has MORE gluten than white bread which has been processed more.

Honestly, it sounds like the mother needs therapy.

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Well, if this is truly the whole story, then you sister sounds quite ill and in serious need of help. Her children are at risk for all kinds of problems.

richard

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I agree. Its no wonder you are concerned for your neices and nephews. Is there anyway you can sit down and talk to your sister about what's going on? I'm not sure of the relationship that you have with her...is there a husband in the picture that maybe you could talk to? Telling a kid 'no' who says they're hungry after you know they aren't eating enough, just isn't right...especially when they're growing and maturing. How has your sisters eating been? Has that concern been coming back? If nothing else, I'd definitely discuss the whole wheat not being gluten free thing with her.

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Whole wheat is full of gluten. You are right to be concerned.

I think the first thing you need to do is pass on a very reputable source of information about whole wheat containing gluten. The university of chicago has a great celiac research center that explains about celiac and the gluten free diet.

I think it is not child abuse to feed them gluten free with negative celiac tests, since she is right that many people have intolerances or even celiac with negative test results. However, she needs to actually do it! I have a post about going 100% gluten free on my blog that might appeal to her need to control things ;P

Next, there are so many good blogs for people with histories of eating disorders and also feeding kids. A favorite is:

http://familyfeedingdynamics.com/

I wonder if she would be interested in any of the articles there. I am guessing from your post that she may feel judged by you if you send something like this her way, but if there is a way to share articles with her without directing them at her (like on facebook as your own wall post with a comment having nothing to do with her) that might help.

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I made a boo boo yesterday - I should stick to facebook or forum not both!! :blink:

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If she says that they have improved on a gluten-free diet while she is feeding them whole wheat, then their problem (or supposed problem) likely has nothing to do with gluten.

However, telling family that the kids follow a gluten-free diet would limit the amount of cakes and such they could be given. Just food for thought.

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If she says that they have improved on a gluten-free diet while she is feeding them whole wheat, then their problem (or supposed problem) likely has nothing to do with gluten.

However, telling family that the kids follow a gluten-free diet would limit the amount of cakes and such they could be given. Just food for thought.

I have to agree. Especially because also, I've heard that some people are using a gluten free diet to hide their eating disorder. This kinda sounds like another version of that. Especially since whole wheat is supposed to be healthier for you than white flour.

If you are concerned that these children are being abused please call their local child protective services. You can do so anonymously.

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People think really strange things. My daughter was at my friend's house when she was little and my friend asked me if she could have some Ramen noodles? This was long before we knew of her wheat allergy. I said she could. I was then horrified to learn that my friend gave them the noodles straight from the package. Uncooked! She told them they could sprinkle just a little of the powder on the noodles for flavor. But not too much because she had them on a low sodium diet. I was like... But... You give them GATORADE! It's loade with sodium! She kept denying it until her husband overheard and agreed with me. She then ran to the cupboard and looked. She looked horrified. I guess she didn't read labels. She also kept opened bottles of Gatorade in the cupboard, unopened.

She also told me she had put her middle daughter on a gluten-free diet and that it was really easy. Said to just give her rice instead of bread. Said that it didn't help her at all. Well knowing now what I know about what you really should do to go gluten-free, I doubt that she did it right.

Her kids were very thin and I was amazed at how little food she actually fed them. I think she herself had an eating disorder, living mostly on coffee and cigarettes and bragging that she just ate one meal per day. She had some other weird issues. Like wearing only white tops. She had hundreds of white tops, mostly all the same.

One day the Dr. told her she had to feed her littlest one more food. The girl was 3 I think and weighed only 20 pounds. I also saw the oldest one being screamed at by the dad for eating a whole bag of baby carrots. I think those kids were starving all the time.

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I said she could. I was then horrified to learn that my friend gave them the noodles straight from the package. Uncooked!

Slightly off-topic, but I've heard of other people doing this.

Personally, I think it's gross.

But I've seen people snacking on uncooked ramen noodles - not because they didn't know to cook them, but they actually LIKED them uncooked. Weird, IMO, but my mother also prefers orange peels to the actual orange (which I think is even weirder.)

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I've eaten Ramen noodles uncooked pre-celiac....it was college, and it wasn't terrible :)

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I would encourage her to seek the help of a dietician for her children so she can become more educated about an appropriate diet and calorie intake for children. (and she may need other therapy herself, but it will only be helpful to her if she comes to a place where she wants to be helped).

I noticed several other posts stated to report her: I would weigh any decision to call cps very carefully, and being as objective about the situation as possible: you obviously care very much about your neice/nephew, and sometimes state involvement can have negative consequences for the kids.

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Slightly off-topic, but I've heard of other people doing this.

Personally, I think it's gross.

But I've seen people snacking on uncooked ramen noodles - not because they didn't know to cook them, but they actually LIKED them uncooked. Weird, IMO, but my mother also prefers orange peels to the actual orange (which I think is even weirder.)

My son used to steal the rice stick noodles out of the pantry and eat them like crackers. He was little - 2 or 3??

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A child that is told "no" when they are still hungry would concern me and sister or not I would report them.

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A child that is told "no" when they are still hungry would concern me and sister or not I would report them.

My daughter used to constantly say she was hungry. She would throw down her fork in the middle of a meal and scream that she was hungry and needed a snack. This pretty much stopped once we learned of her food allergies. I guess I was just feeding her stuff she was allergic to pretty much all of the time! She must have mistaken the upset stomach for hunger. I don't know.

More recently she was diagnosed with a thyroid problem and pre-diabetes. That has lessened her hunger more.

She has been overweight most of her life though. Big difference. If she were too thin, that would be another issue. These kids sound too thin.

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Children should NOT go hungry. They are growing. A little overweight is much better than a little underweight. Err on the side of health, err on the side of extra muscle and fat for growing bodies.

Please intervene in whatever way you find suitable. These children need to eat.

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Their_aunt, it sounds like your sister is in need of counseling. Her eating disorder is placing her children in danger physically and psychologically. Report her anonymously and articulate your concerns that the children have been placed in danger willfully by their mother by under feeding them, denying food when asked, and feeding them food that would make them otherwise sick, and their weight being noticibly under the norm. See you can get the kids for the weekend to make sure they eat more in the meantime. I doubt talking to her about a gluten free diet will help, I think she may lash out or blame you for her children's situation. Be cautious, keep your wits and wisdom about you, and I will pray for a better resolution for these poor kids.

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People think really strange things. My daughter was at my friend's house when she was little and my friend asked me if she could have some Ramen noodles? This was long before we knew of her wheat allergy. I said she could. I was then horrified to learn that my friend gave them the noodles straight from the package. Uncooked! She told them they could sprinkle just a little of the powder on the noodles for flavor. But not too much because she had them on a low sodium diet. I was like... But... You give them GATORADE! It's loade with sodium! She kept denying it until her husband overheard and agreed with me. She then ran to the cupboard and looked. She looked horrified. I guess she didn't read labels. She also kept opened bottles of Gatorade in the cupboard, unopened.

She also told me she had put her middle daughter on a gluten-free diet and that it was really easy. Said to just give her rice instead of bread. Said that it didn't help her at all. Well knowing now what I know about what you really should do to go gluten-free, I doubt that she did it right.

Her kids were very thin and I was amazed at how little food she actually fed them. I think she herself had an eating disorder, living mostly on coffee and cigarettes and bragging that she just ate one meal per day. She had some other weird issues. Like wearing only white tops. She had hundreds of white tops, mostly all the same.

One day the Dr. told her she had to feed her littlest one more food. The girl was 3 I think and weighed only 20 pounds. I also saw the oldest one being screamed at by the dad for eating a whole bag of baby carrots. I think those kids were starving all the time.

It breaks my heart to read things like this. My parents starved my brother and I when we were little. I used to hide food in our bedrooms any time I could sneak it.

Now I hoard food - not in a bad way. I don't buy lots of snacks, but I have enough food to make it through about two weeks to a month if a disaster happened. I'm afraid of my kids never having enough to eat. Nevertheless, my 14 year old was told by her doctor it wouldn't hurt if she gained five pounds. Constantly telling her to put more on her plate. She never takes in to consideration the exercise she does for sports.

Ok, I'm rambling, sorry.

Anyway, to the main poster, I'm sure she doesn't mean any harm to her children, but remember that most people who suffer with eating disorders do so because they need to feel in control of something. If you can find a way to get her to attend some meetings for eating disorders and maybe some clinics about children's health and eating, it might help a bit.

As for reporting her for child neglect - don't do it. Those things have a way of getting found out and it could really cause more problems. If the children's health is truly in danger, the doctor is required to report it (in most states).

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My mother in law is a retired nurse, she's always used white bread because she's allergic to wheat. She reads labels, but tends to assume she knows what things are made of instead. She's in her 70's and finally realizing she's been doing it wrong.

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As for reporting her for child neglect - don't do it. Those things have a way of getting found out and it could really cause more problems. If the children's health is truly in danger, the doctor is required to report it (in most states).

I've ended up having to report child neglect and abuse several times and it can be very obvious who made the report despite "confidentiality." Your sister's kids may need your support and it would be very bad if you got completely cut off from them. It is a decision to weigh very carefully, as a last resort. There are better ways to intervene, imo.

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This is absolutely appalling. Those kids are at serious risk for so many problems both physical and emotional. A great point was already made, it should be pointed out to her that if her kids are doing so much better on this "gluten free" diet than it's definitely not a gluten issue or the whole wheat products she's feeding the would have them very I'll. Report her!

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I started to google again, but my anxiety was still pretty much under control. I tried to convince myself I had colon cancer, but it didn't hit me hard until I told the doctor I thought the pills were causing the pain and that I was going to stop taking them. This is pretty much where things took a turn for the worst. One day, after I had a couple corn dogs and french fries, I went to the bathroom to find that my stool was yellow and there was blood. Immediately I panicked and called my GP. A lot of things have scared me these past few months, but none more than that instance. The occult blood test came back negative, what do you know. I was pretty healthy at around 147 pounds, my average weight. I told myself at that point that I would turn my life around before things got any worse. I wanted to go vegetarian and avoid meat for the rest of my life. That seemed like the best option at that point. Well, I was wrong, because I was probably b12 deficient, and where does b12 come from? Yeah.... Well, it probably wasn't colon cancer, so what else could I convince myself it was you ask? Pancreatic cancer. I rolled around in bed, night after night, feeling extremely tired, and at the same time, not being able to sleep. When I closed my eyes I had visions of what my organs would have looked like with cancer spreading everywhere. Other times I would envision my own funeral 2 months later after a very painful death. I was very spaced out. It was beyond brain fog. Not only was I so bloated I couldn't eat, but I just made it worse by taking immodium. After that it was god awful. If I was dying, I just wanted to know what was wrong with me, if I had any fighting chance at that point. I think I went down to 136 at this point. I got the blood test and was prescribed a different antidepressant by my doctor. I waited until my test results came back to take it. By that time, I had dark circles under my eyes and white patches on the insides of my cheeks. I came back to get the results of the test, and to my surprise there was absolutely nothing wrong with me (at least that could be seen from my blood). I already started eating meat again by this point. WBC 8.7 (normal) RBC 4.94 (normal) I wasn't even anemic. I swore that my skin started to yellow. I was constantly checking my eyes and suffering. I decided this was the last straw. I started to take the medication the doctor prescribed me, and I felt great! But a couple days later, I took the full dose and woke up the next morning, not being able to breathe and with a super fast heart rate and dilated pupils. This was my first time in the ER. The docs were dumb as rocks. They told me that it was "just anxiety". I couldn't even feel the move the left side of my body. I nearly died, and those kooks told me that I had anxiety! They made me sit in a chair for 30 minutes while the reaction went away! (not to mention I got the bill recently from that ridiculous debacle and they're trying to charge me $4000 for letting me in the door and sending me out.)   Anyhow I'll summarize the next few months between the ER incident and now, including a 2nd time I landed in the ER, wowee! -Lost 6 more pounds between that point and about a month ago. -Kept taking paxil and had several more reactions similar to the one that put me in the ER. -Learned about b12 deficiency and was convinced I had pernicious anemia for a while. Taking multivitamins staved off some of the symptoms, including the bloating. -Some mulitvitamins I bought actually made me feel worse including making my joints hurt, although this may be actually due to wheat, as i've learned -Fatigue became progressively worse. I've got Lymph nodes raised all over my body and I was sleeping most of the day before I stopped eating gluten entirely -Was constipated for days on end. My bowel movements improved with experimentation, although I still couldn't figure out what the problem was. I knew that things like French Toast would make my stomach hurt, but I didn't draw the conclusion because I was convinced that fatty foods would help me gain all that weight back (It obviously didn't. As a matter of fact it was probably why. I'm still sitting at around 132 but at least I'm not dead or getting worse from what I can gather.) -Extreme brain fog until I started taking large dose of sublingual b12. I play a lot of video games and my coordination was god awful.  -Took a non-sublingual b12 pill which made me bloat big time. I should have checked to see if those pills had wheat. -My hands and feet felt like blocks of ice, and my feet burned when I got in the shower. -Developed Tachycardia. I'm not sure when, but my resting heart rate is unsettling. Doctors said nothing about it -Diagnosed myself with several cancers and had several panic attacks which I used my b12 tablets to quell. -Tried to take Elavil again, and woke up with a strange feeling in my left arm, so I stopped taking it.   I ended up in the ER for the 2nd time a few weeks ago. This time I was sure I was going to get the answer I didn't want to hear. "We've examined your chest X-ray and found cancer spreading throughout your body" or something along those lines. I knew that there had to be something going on. I went in there for chest pain, but I had to tell the GP about what was going on. The weight loss, the abdominal pain that mysteriously disappeared months beforehand after I took the pills. He suggested that it must be some sort of malabsorption/malnutrition that was doing this, and I was convinced that an H Pylori infection was the cause. Anyhow, my chest X ray came back normal, as did my blood test, and when I got home, my grandma suggested that I look into Therapy. (as if that would somehow help with the chronic fatigue and other debilitating symptoms) I had nobody else to turn to, so I emailed my grandma and told her everything that was going on. She told me that she thought I had celiac disease, and so far, the results aren't too bad. I've gotten "glutened" a couple times so far, but my constipation is gone, and I've gained a little bit of my weight back. I'm not even sleeping as much as I was. I'm still going to see a gastro, a dentist, and a derma about my more serious concerns, but overall, I don't feel too crappy. I've even got my appetite back. Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains. I hope I can eventually get diagnosed and get used to this place.        
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