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eborzecki

My Parents Don't Understand And Its All My Sister Fault (She Has Celiac Too)

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I was diagnosed with Celiac through a blood test last week, since my sister has Celiac and was diagnosed through endoscopy they told me that either way I will have to go gluten free so I decided not to do the endoscopy and repeat the blood test again later to make sure my IGA and TTG antibodies are going down.

My mom doesn't understand that even a little Gluten can hurt, and its all my sisters fault. My sister was diagnosed 4 years ago, she has the upset stomach symptom and she doesn't mind munching on gluten from time to time. I have the brain fogs, falling out hair, DH and symptoms that don't last a day and a little gluten really can hurt.

My husband who I thought would be less understanding is helping me through this all the way with watching when we cook and clean and anything that can make sick, I just want to get better and get my beautiful hair back.

My mom on the other hand says I'm paranoid and that a little won't hurt, she says that I am overreacting and that a little won't kill me.

Not only is this hard on me as is, but her not being helpful and honest with what she puts in the food is pushing me to the point where I either have to bring my own food there or not go there at all.

How do you deal with your family being like this, we are going over for Thanksgiving to my in-laws and I am worried that they are going to look at me like I am crazy for not eating the Turkey because of what was put it in, I am bring my own green bean casserole and cake, but I am so sick of people looking at me like a stranger, over-reactor, and like i am nuts.

I hate shedding tears because of this, but its so hard.

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Maybe some info fro the experts? print out & highlight the important 2 or 3 sentences. There are more than just these 2 so you can print out more "evidence." Google "Celiac Center"

http://www.celiacdiseasecenter.columbia.edu/A_Patients/A02-FAQ.htm

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

My mom was telling me about all the people that were telling her I didn't need to be sooo strict. I told her the Univ Of Chicago Celiac Center told me I must be. She sort of thinks they are my "consulting" docs. when anyone says anything to her, she says "her specialists at the Univ of Chicago hace told her...."

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets6_Treatment.pdf

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms.

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Thats pretty tricky. I'm sorry you have to go through that. My mother is very understanding and the more I tell her (no cross contaminination from colandors, wood spoons, etc.) the more she changes. So when I told her about colanders she went "Oh, really? I never thought that would matter much" and then the next day she is telling her friends that we need gluten free colanders. But we are going to my grandmothers for thanks giving and I politley asked her not to put stuffing in the turkey and it bugged her a bit. But I think she will comply. If not I will get glutened because I am eating the turkey. Hope everything goes well for you! Green Bean Cassorele is my favortie but I didn't know it could be made gluten free. If you have time post the recipe for newbies like me.

Good Luck! And Happy Thanksgiving. (Some one on here told me it's about the people you are with not the food.) B)

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I'm so sorry your mom doesn't understand. Have you explained to her that you'll be sick for more than a day if you eat gluten? Explain exactly what happens, in all the gory detail. Tell her how long it takes you to recover. Maybe she'll get the point then.

You also might want to mention to her that by eating gluten both you and your sister are putting yourself at a higher risk of getting an autoimmune disease or cancer in the future. You might want to mention the large number of people on this board who have Graves, Hashimotos, Diabetes, Lupus, Fibromyalgia, etc. in addition to their Celiac Disease.

I don't think it helps that your sister isn't taking this seriously and thinks it's okay to cheat. But there's not much you can do about that. If you can't trust your mom to give you gluten free food, you may have to bring your own from home. Maybe then she'll take you seriously.

It's funny how people sometimes react differently to our diagnoses than we expect them to. I was expecting to have a problem with my mother-in-law, but she's been awesome. She called Honeybaked Ham to check that the ham was gluten free.

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You could also point out that just simply for the fact that you already have Celiac disease, your life expectancy is less than a "healthy" person's. And if you (and your sister for that matter) continue to indulge in gluten-y foods, you shorten your life expectancy even further, even without noticeable symptoms.

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Maybe some info fro the experts? print out & highlight the important 2 or 3 sentences. There are more than just these 2 so you can print out more "evidence." Google "Celiac Center"

http://www.celiacdiseasecenter.columbia.edu/A_Patients/A02-FAQ.htm

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

My mom was telling me about all the people that were telling her I didn't need to be sooo strict. I told her the Univ Of Chicago Celiac Center told me I must be. She sort of thinks they are my "consulting" docs. when anyone says anything to her, she says "her specialists at the Univ of Chicago hace told her...."

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets6_Treatment.pdf

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms.

I like this.

Then tell your mom that you are very very sorry that your sister is willing to risk her life and health, but you are not going to follow the same path. If she can't respect your decision to remain healthy, you won't be eating at her house.

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And? So what if they do not get it? Talking to some people is like talking to a wall. If anyone does not approach it from the angle of a listener, then I think it is not worth the hassle.

There are lots of people who will not get it and some who will be a pain in the a.. about it. You are worth so much more than the time to stress over it. Your only job is to care for yourself, not to educate people. If friends and family are causing issues and stress, then it makes sense to avoid those people till they get it. If you do go, then you know you have to bring your own food.

I have been fortunate to have good friends and family.

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Has your mom been tested? Maybe she's afraid she has it, too?

I think "special diets" are hard for many people to stick to. Look at how many people you know who are supposed to eat low sodium but go to McDonalds twice a week. Or a diabetic. drinking 6 cans of beer & ending up in the hospital, only to do it again a few weeks later. We can stick to our diet or cheat, its our choice (adults anyways). The person who encourages the diabetic to have another or the Celiac to eat a bite need to be ignored and avoided.

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