Newly Diagnosed and New to Site

[Eileen2]

Hello All,

I was diagnosed with Celiac about two months ago. This is all VERY new to me. I’m 38 and the last 2-3 years I could tell something was wrong but I could never get to the bottom of it. I switched doctors and the new one immediately found it. I’ve talked to 2 people I know that have celiac in hopes of learning from them but they have some different views. So I have a few questions please if someone has time. 
 

I have two teenagers and a husband who don’t at this time eat gluten free. I was told that if I make a pbj sandwich and after touching the bread with the knife I can’t dip it back into the pb jar because it will contaminate the whole thing and I can’t eat it. I need to have my own cooking pots/ utensils. I should keep a shelf in the pantry for my things and keep it separate from any gluten containing packages. Also, bring my own food wherever I go and don’t plan to eat out anymore. Also beauty products like lotions and shampoo/ conditioner have to be gluten free …. 

My husband and kids were like “oh ok you have an allergy” but explaining an auto immune disease to them …I’m looking for some resources. Did anyone get their kids tested after their positive results? 

I am looking for ANY tips and suggestions. I know this is serious but I don’t know where to start ….. thank you so much in advance. 

[trents]

Welcome to the forum Eileen2! You say":

I have two teenagers and a husband who don’t at this time eat gluten free. I was told that if I make a pbj sandwich and after touching the bread with the knife I can’t dip it back into the pb jar because it will contaminate the whole thing and I can’t eat it. I need to have my own cooking pots/ utensils. I should keep a shelf in the pantry for my things and keep it separate from any gluten containing packages. Also, bring my own food wherever I go and don’t plan to eat out anymore. Also beauty products like lotions and shampoo/ conditioner have to be gluten free …. 

This is all true except possibly the beauty products. Anything that has potential for getting in your eyes or lips/mouth that has gluten in it should be avoided. Mucous membranes are very permeable. Skin not so much but even some of our forum residents testify that they experience "glutening" transdermally. You would just have to go trial and error on that one. And yes, eating out is extremely risky for celiacs. When you do eat out go for things like steamed rice, steamed veggies, baked potatoes, fresh fruit. Ask that meat and eggs be cooked in a separate, clean pan. Start by informing the waitress that you have "a medical condition that demands I avoid gluten" and insist that she make notes on the order reflecting your requests to avoid cross contamination. Sometimes I have actually requested to speak with the chef in order to make sure those things are followed through on. Being a celiac requires developing assertiveness and a thick skin in order to protect yourself.

One recent large study done by the Mayo Clinic showed that 44% of people with a first degree family relationship (parent, child or sibling) to someone with celiac disease were found to have celiac disease when tested. Other, earlier studies have shown that to be more like 10%. But in any case, there is a good chance others in your family will have celiac disease and should be tested, even though they have no symptoms. Many people are "silent" celiacs with no symptoms or minor symptoms until the damage to their small bowel lining becomes severe. And by that time there may be irreversible damage to other body systems.

Yes, one of the hardest things to get people to understand is that celiac disease is not a food related allergy but a food related autoimmune disorder. I suggest you Google and find some concise information that you can turn into a handout to give to family members and friends.

[Eileen2]

Thank you very much 😁

[Scott Adams]

Welcome to the forum! 

I also live in a mixed household that isn't 100% gluten-free. My family is very good at not "double dipping" a butter knife, for example, after they might put some mayonnaise on a piece of wheat bread, but I'm sure that this approach may not work for everyone, and some celiacs might want to keep their own condiments and label them. I just trained them to take out what they need using a clean butter knife, and after touching the bread to clean the knife well before getting more.

This article has a lot more tips that might be helpful, and it is great that you are wanting to learn more about this, as it will speed up your recovery process:

 

[Bronwyn W]

On 1/18/2022 at 9:43 PM, Eileen2 said:

Hello All,

I was diagnosed with Celiac about two months ago. This is all VERY new to me. I’m 38 and the last 2-3 years I could tell something was wrong but I could never get to the bottom of it. I switched doctors and the new one immediately found it. I’ve talked to 2 people I know that have celiac in hopes of learning from them but they have some different views. So I have a few questions please if someone has time. 
 

I have two teenagers and a husband who don’t at this time eat gluten free. I was told that if I make a pbj sandwich and after touching the bread with the knife I can’t dip it back into the pb jar because it will contaminate the whole thing and I can’t eat it. I need to have my own cooking pots/ utensils. I should keep a shelf in the pantry for my things and keep it separate from any gluten containing packages. Also, bring my own food wherever I go and don’t plan to eat out anymore. Also beauty products like lotions and shampoo/ conditioner have to be gluten free …. 

My husband and kids were like “oh ok you have an allergy” but explaining an auto immune disease to them …I’m looking for some resources. Did anyone get their kids tested after their positive results? 

I am looking for ANY tips and suggestions. I know this is serious but I don’t know where to start ….. thank you so much in advance. 

Hi Eileen,

I was diagnosed and have been on a Gluten Free diet for 4 months. We have tested 4 other family members (sister, child, grandchild and niece) and all were positive with the Celiac gene. Two were symptom free and one had Dermatitis herpetiformis (DH) which was diagnosed as a sun allergy for 20 years and the other diagnosed with diverticulitis. I will be testing for neurological damage in the coming weeks.

My take on this Gluten "thing" ... glutening is easier than I thought it would be, you can never be too careful, although everybody is different. I eat out a lot and rely on tablets to deal with unintentional exposure to gluten; sometimes a simple headache, sneeze , a sharp pain in my gut or sinus can be a clue to this exposure. I have had to become so much more aware of the tiniest signs in my body.

On the up and up; my awareness has increased, my brain fog and mood has lifted and my creativity & mojo has returned.

I  am all the better for knowing and this Celiac.com website has been invaluable. Thank you so much to everyone on this incredibly resourceful website.

Best of luck fellow Newbie