Need Info To Help Teach Celiac About Mistakes They Are Making
Posted 15 May 2012 - 10:26 AM
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!
Posted 15 May 2012 - 10:44 AM
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
"You have problems. There are not enough paper clips, and then you've got world hunger. Your problems are somewhere in between." -DPR,III
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Posted 15 May 2012 - 10:50 AM
Posted 15 May 2012 - 10:54 AM
Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND.
Responsive to iodine withdrawal for DH (see quote, above).
Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
Posted 15 May 2012 - 11:03 AM
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.
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