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Need Info To Help Teach Celiac About Mistakes They Are Making
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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!

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

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

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

http://www.celiacdiseasecenter.org/A_Patients/A02-FAQ.htm

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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.

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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.

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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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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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