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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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schuyler

My Cousin Doesn't Get It

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My cousin's 3 boys lived with me and my parents for a few months while she was in Iraq. While they were with us, I had the boys tested through enterolab, and all 3 of them tested positive for the celiac gene and two of them tested positive for gluten intollerance, soy allergy, dairy intollerance, and corn allergy. They all did so well on this diet that the dr gave them a diagnosis of celiac.

The boys have been back with their mom for about 3 weeks now. I saw them yesterday, and she had all 3 of them eating grilled cheese sandwiches on whole wheat bread! Afterwards, the 3 year old threw up and her 4 year old went into a rage. She sees no reason to keep them on "such a restrictive diet", since they don't always complain of stomach problems (the 3 year old, who tested negative, only occasionally complains of stomach aches).

Her 4 year old was just kicked out of preschool for behavior/anger issues, which my cousin attributes to their dad being a horrible man. I think she is partially right, but Nicolas's behavior issues went away while with me, I'm positive that his allergies play a huge role too.

The 3 year old now only weighs 17 pounds! He is really tiny, and looks like a classic celiac kid. He has horrible night terrors lasting 30 min + a few times a night, and he eats constantly. But she says that if he had celiac he would have diarrhea (he's always constipated).

Her 2 year old started saying a few words while gluten-free,df,sf,cf. Now, he won't say anything. My cousin says that his lack of verbal skills is bcause he was a 1 lb preemie. But why would a kid lose verbal skills that he once had? He also has constipation issues.

All 3 of her kids have hyperactivity and behavior issues (more thatn just typical boy behavior). She says that their diet was too expensive to stick to, and she doesn't think they need it.

I am just so frusterated! I know my cousin would never deliberately harm her kids, but she is in major denial about this! What really gets me, is that before she went to Iraq, she was pushing to have all the kids tested. I had the boys on a diet of organic chicken/ turkey, organic vegetables and fruit, and rice. They only had an occasional treat. The diet was actually cheaper than a regular diet because I wasn't buying many premade things ( except for the few treats that they had for celebrations).

I don't know what to do??!!! I plan on showing my cousin all the responces that I get on this thread. Any advice for either of us would be greatly appreciated.

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Oh Danielle,

I am so upset to hear this! I remember all you went through to have the boys tested and then getting them on the diet. They were *thriving* according to what you told us.

If your cousin does read this, I would implore her to reconsider her decision to take the children off their special diets. Looking at just symptoms does not tell the whole story. There could be serious damage being done to their intestines, as well as to their brains. Yes, Celiac can affect the brain and nervous system. The behavorial changes and the anger are proof of this. It will only get worse as they get older.

Please, put them back on the positive track that Danielle had them on. A gluten-free diet does not have to be expensive, and after you get the hang of it, it becomes second nature.

I speak from experience, as a person who was undiagnosed for many years. I am left with many food intolerances, anxiety, some neuropathy, and various other nagging health problems. If I had been diagnosed sooner, I am convinced that I wouldn't be in this state now.

I would have done anything for someone to pay attention, as Danielle did, and figure this out for me years ago. I understand that this may not make perfect sense to you at the moment, and that you want the best for your kids--it's a lot to take in. We are not brought up to think that a common food can have this much of an effect on health--but this is one instance where it does.

Please feel free to join up here--read other's stories and get great tips on how to do the diet easily and inexpensively. We are here to help in any way we can. :)

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God I would be so mad. Its a shame ..our doctor told us that when you go back on gluten ... after being celiac you can develop cancer. Maybe there is some guilt about being in Iraq... and some other problems.. I would tell her that she is going against what the diagnosis is and she is hurting them ... You can only do so much... you may have to turn your back. There is something more happening inside her head... The kids are going to keep getting sick.... every time they are glutened.... eventually they are going to get so bad,,,, she is going to have to make a change.... If she keeps it up ... the damage is going to long er lasting..

Just say a prayer and try and explain that she is making it worse.

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My cousin's 3 boys lived with me and my parents for a few months while she was in Iraq. While they were with us, I had the boys tested through enterolab, and all 3 of them tested positive for the celiac gene and two of them tested positive for gluten intollerance, soy allergy, dairy intollerance, and corn allergy. They all did so well on this diet that the dr gave them a diagnosis of celiac.

The boys have been back with their mom for about 3 weeks now. I saw them yesterday, and she had all 3 of them eating grilled cheese sandwiches on whole wheat bread! Afterwards, the 3 year old threw up and her 4 year old went into a rage. She sees no reason to keep them on "such a restrictive diet", since they don't always complain of stomach problems (the 3 year old, who tested negative, only occasionally complains of stomach aches).

Her 4 year old was just kicked out of preschool for behavior/anger issues, which my cousin attributes to their dad being a horrible man. I think she is partially right, but Nicolas's behavior issues went away while with me, I'm positive that his allergies play a huge role too.

The 3 year old now only weighs 17 pounds! He is really tiny, and looks like a classic celiac kid. He has horrible night terrors lasting 30 min + a few times a night, and he eats constantly. But she says that if he had celiac he would have diarrhea (he's always constipated).

Her 2 year old started saying a few words while gluten-free,df,sf,cf. Now, he won't say anything. My cousin says that his lack of verbal skills is bcause he was a 1 lb preemie. But why would a kid lose verbal skills that he once had? He also has constipation issues.

All 3 of her kids have hyperactivity and behavior issues (more thatn just typical boy behavior). She says that their diet was too expensive to stick to, and she doesn't think they need it.

I am just so frusterated! I know my cousin would never deliberately harm her kids, but she is in major denial about this! What really gets me, is that before she went to Iraq, she was pushing to have all the kids tested. I had the boys on a diet of organic chicken/ turkey, organic vegetables and fruit, and rice. They only had an occasional treat. The diet was actually cheaper than a regular diet because I wasn't buying many premade things ( except for the few treats that they had for celebrations).

I don't know what to do??!!! I plan on showing my cousin all the responces that I get on this thread. Any advice for either of us would be greatly appreciated.

Maybe have her read some of the effects that can occur if not on the diet and are celiac like the other autoimmune diseases that they have a higher risk of getting,Malnurished,developmental delays,ADHD, or have to speak with a gastroenterologist and have him explain it to her and take it from there. I hope it all workls out. My now 3 yr old had the bloated belly severe constipation not diahrea and sick alot and very developmentally delayed. See if she will try the diet for a period of time to see what changes occur in the kids and if they are better or the same.

Good Luck

Celina

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Not sticking to the diet if they are diagnosed Celiac would be considered child abuse and she could be put in jail and lose her kids. The doctor may very well report her especially since the kids were thriving while they lived with you. She needs to understand that she could literally KILL those poor kids by not sticking to the diet. I can't even fathom being forced to eat gluten and all my symptoms are not stomach issues. Does she realize that she's causing possibly irreversible damage to their intestines and brains? That's just so sad. Some people just don't get it. I will say a prayer for those poor children.

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Hi Danielle,

I remember praying for you and the boys and then rejoicing when they started doing so well. It is a big committment for anyone to keep their kids on the diet, but it's not as "restrictive" as it seems. I hope she reconsiders for the good of those 3 little boys. It's easy to attribute bad behavior to all kinds of things, but if the kids behaved well with you, then something was working. No mother wants her kids to be sick, so I hope your cousin realizes what a simple thing it really is to keep her kids healthy.

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Hi Ladies,

This is Danielle's cousin Molly. Thnk you so much for all the information. I took the boys to the doctor this morning, and he really went over things with me. I just didn't understand how much damage I was doing to the boys by not following the diet. I was in tears in the doctors office when he was telling me exactly what was happening to the boys. I never meant to hurt them; I just thought that since they weren't having any of the typical problems, that they must be fine. I was in denial. They are back on their diets, and I hope everything improves.

I'm sure I'll be on here from time to time asking questions. This diet is somewhat confusing! Luckily Danielle is helping me.

Molly

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Hi Ladies,

This is Danielle's cousin Molly. Thnk you so much for all the information. I took the boys to the doctor this morning, and he really went over things with me. I just didn't understand how much damage I was doing to the boys by not following the diet. I was in tears in the doctors office when he was telling me exactly what was happening to the boys. I never meant to hurt them; I just thought that since they weren't having any of the typical problems, that they must be fine. I was in denial. They are back on their diets, and I hope everything improves.

I'm sure I'll be on here from time to time asking questions. This diet is somewhat confusing! Luckily Danielle is helping me.

Molly

Molly,

Kudos for following through, going back to the doc, and getting them back on the diet! You're doing the right thing, and we're all here to help.

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Molly,

Please let us know what we can do to help. We really want everyone to be happy and healthy...and for some of us, that means being gluten free. If you have questions---no matter how silly they seem---please ask!

Just remember...just because you might not see an "obvious" reaction doesn't mean that damage is being done. Strict gluten free is the way to go.

Thank you for your service to our country!

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Molly :)

I'm so glad you decided to join the forum! We're all here for you.

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Welcome, Molly!!!!

I hope things get easier for you, and please let us know whatever questions we can answer to help you!

I hope your two-year-old regains his words. If not, check back in--many of us have kids with autism (I don't want to scare you, but losing language is a classic sign--don't freak out, because everything just might be fine, especially if dietary issues are now resolved), or speech apraxia, or ADD, and maybe what we have learned can help you before you make whatever mistakes we made!

There are some fabulous gluten-free recipes on this board, and also at www.gfutah.org and www.foodph.com. The first couple of weeks might be tough, but after that, it's pretty simple, especially with help.

Keep us posted, okay?

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