Need Info To Help Teach Celiac About Mistakes They Are Making

[Sassy Cat]

While I do not have Celiac Disease, I think that I am probably the person in our family with the most knowledge regarding Celiac. I had never heard of Celiac until my Mother-in-law was diagnosed approximately 7 years ago. One year later my husband started with a terrible rash and was then diagnosed with DH. My mother in law saw a nutritionist and I trusted her to watch her own diet. I read some books and learned how to cook gluten free at home but when my husband kept sneaking donuts, big macs, and other items I hate to admit that I kind of stopped trying quite so hard. I still cooked gluten free at home but I gave up on nagging him and stopped doing research - I have 2 kids so I do not want to be his mother. Just this year my 11 year old daughter was diagnosed with Celiac. I have read everything I can get my hands on, got rid of almost all of the gluten in my house (keeping a few favorites for my teen - very few!), got the school on board, and basically became her gluten free advocate. I will do everything in my power to keep my daughter safe and healthy.

After all of my research, I have discovered some things that we were doing wrong as a family before my daughter's diagnosis. My house is on track at this point and my husband has corrected his ways and is setting a good example for our daughter. I am really concerned about my mother in law. She has had several strokes and has a hard time saying what she means at times. She is doing some things wrong when it comes to eating. She picks croutons out of salads. She eats pie up to the crust. She has even tried to pick the meat off of a White Castle hamburger. She is always complaining of headaches, fatigue, and how her feet hurt. I know she is getting gluten in her system. She is older and a widow and wants to eat out all of the time but does not communicate her needs to the staff regarding her Celiac. She is under the misconception that the only symptom is diarrhea and if she does not have that then everything was OK.

I am hoping to find some information from a reliable source that is simple that I can share with her and her other children that will make it clear that her food is not safe if it has ever touched gluten. Everyone in the family thinks that I am overreacting so it really needs to come from a third party. A book is simply too long for her to be able to get through at this point because of her strokes. Just wait until the next family function when I start telling her other 5 kids to get themselves tested!

I would appreciate any help and/or advice. Thanks so much!

[kareng]

Give her info from the experts. However, if she has been having some strokes, her ability to remember and understand may be impaired.

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The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten

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

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[Sassy Cat]

That is great! Can you think of anything that I can find that says not to do some of the specific mistakes she is making like picking bread and/or croutons off of her food, and eating the pie but leaving the crust? I can not find anything that specifically says not to do those kind of things.

[pricklypear1971]

Is there a local Celiac group with a mentor program? That might be helpful if she could have someone to talk to her own age, who is like her.

[Sassy Cat]

Is there a local Celiac group with a mentor program? That might be helpful if she could have someone to talk to her own age, who is like her.

I have not been able to find any functioning support group in the area...and I am in the St. Louis region. I had hoped to find something for my daughter to attend. I asked her doctor and I have come up empty handed. I spent a lot of time looking for ANY kind of support group. She actually lives in a retirement community and is the only person in the whole community diagnosed with Celiac. They will not accommodate her needs in any way at the retirement community.

I understand that when it says even small amounts of gluten can cause harm but unless I can find something that says - Do not eat any of a pie made in a regular gluten crust. I just do not think she is going to completely get it. There are lots of people telling her to go ahead and eat it - there is only me saying not to do it.