How Would You Want To Be Cared For?

[Country Girl]

My son is 26 months old and was dx last month. He has become a completely different child since he is now on a gluten free diet and we are very strict about it. I feel a lack of control in managing this disease though, b/c he is too young to truly communicate to me how he feels. So my question to the adults is two fold:

1. Tell me how you feel when you ingest gluten, and does it matter the amount or is it the same feeling regardless of the amount?

2. If you became unable to care for yourself, what would you want your caregiver to know about celiac disease?

[lizard00]

My son is 26 months old and was dx last month. He has become a completely different child since he is now on a gluten free diet and we are very strict about it. I feel a lack of control in managing this disease though, b/c he is too young to truly communicate to me how he feels. So my question to the adults is two fold:

1. Tell me how you feel when you ingest gluten, and does it matter the amount or is it the same feeling regardless of the amount?

2. If you became unable to care for yourself, what would you want your caregiver to know about celiac disease?

1. When I eat gluten, I get a horrendous headache for two days, then for the following few days I feel like my entire upper gi tract is on fire, everything I eat hurts. EVERYTHING. Then after that slowly subsides, I get a few days of reflux. Finally, after about 8 days, I start to feel normal again. EDIT: I forgot to add the irritability. WHOOO...my poor family!

2. How important it is to watch out for contamination and to read EVERY label, or call EVERY company that doesn't clearly list all sources of gluten. It's easy to avoid the obvious stuff, but we don't get glutened by obvious stuff. The last thing for me was flavored coffee from the bulk section of the grocery store. There weren't any labels. Lesson learned the hard way.

[Mother of Jibril]

Good question!

1. When I get glutened, the first thing I notice is that I feel anxious and irritated at everyone around me. Then I get constipated (which causes rectal bleeding), bloated, gassy, and I get an ITCHY rash. It takes at least a week before the rash begins to dry up... even longer for the bumps to fade away.

2. If I couldn't take care of myself, I hope my caregiver would just feed me lots of natural foods like meat, rice, fruits, vegetables, etc... I don't miss bread. It's not a "treat" when it makes you sick. Fresh food is 10X better than processed... you never know what might be hiding in the ingredients. Then the trick is just to keep it separate from other people's food. You can't even share a jar of peanut butter if the other person is going to get bread crumbs in it.

[WW340]

My gluten reactions feel like a cross between food poisoning and a bad case of the flu. I feel sick to my stomach and often have violent vomiting, diarrhea, bad stomach pains, hurt all over and total fatigue. I also get very cranky. My husband can always tell by my crankiness before I show the other symptoms. I also itch all over 24 hours a day. My symptoms last from a couple of days upto a couple of weeks.

I never intentionally eat gluten, so cross contamination is the only way I have been glutened for the last 2 years and the symptoms have lessened slightly in degree and length, but are still very miserable. I do all I can to avoid cross contamination.

If someone was caring for me, I would like them to make 100% sure I was not getting glutened. I would also like for them to try to find or make all my old favorites gluten free and tasty versions at that. This is what I did for myself, and now feel pretty comfortable with the gluten free diet. When I missed a certain food, I would go on a quest to find a good gluten free version, if I couldn't find a quality product, I learned to make it. I spent an entire week making pizza dough, until I could make one I enjoyed.

My whole family is gluten free with me at home, other than their own cereal, crackers, or bread. All cooking is gluten free. Flour is not even allowed in the house. It helps to have that support and safety at home.

[happygirl]

Learning about the disease, learning how to make foods that he likes, never making it feel like its an imposition, and making it a part of their normal routine. One of the predictors of how well someone adjusts and maintains the gluten free diet is the support of those around them. Fully understand how to 1. read labels and make smart decisions about ingredients and 2. prepare food without cross contamination from gluten free products. Learn to convert all their 'normal' recipes.

Those are things my mother has done for me (and I'm an adult!), and it has made a world of difference. Your son is lucky to have a mom like you!

[Country Girl]

Thank you all for your responses. It makes me want to cry to think that my son was having these feelings for 2 years, but knowledge is power. I think being able to explain to our families and friends how people feel when they get glutened will make everyone around him to be more diligent and careful around him. His disposition has changed, he was very cranky all the time, but at only 2 we thought at the time that is was just "his" personality.

Thanks again

[Piccolo]

Country Girl,

Welcome, When I get glutened I can have D, floaters, migraines, and the worst is a dizzy reaction that lasts 6 hours. That is the worst and I avoid this if at all possible. Another reaction I have is my colon starts hurting with continued exposure. My longest reaction took my a month to recover.

My family and I eat gluten free, but they have their own bread etc.

Susan

[ang1e0251]

I've decided that the next time someone asks me what are the symptoms I will ask, "Have you ever had the stomach or intestinal flu or maybe food poisoning?" Then I will tell them, "It's like that plus some other symptoms in different variations."

I really think that's the closest I can come to explaining a glutening to someone. It's hard for them to relate to all the different things we feel but they can relate to a time they were so sick they were miserable.

You are very perceptive in asking your questions. You are your child's voice and champion.

[ShayFL]

I get similar to Susan. The dizziness is the worst of all!!

[mef]

Congratulations on finding a diagnosis and being so supportive!

1. I get migraines and joint pain. I tend to be a bit cranky too, but I am not sure if that is the pain or the celiac.

2. My mom is great at being supportive. I was diagnosed later in life and had a difficult time transitioning to the gluten-free diet. She went on the gluten free diet to support me. I was living at home at the time, so it helped not feel so alone.