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Newly Diagnosed and New to Site

Eileen2
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Eileen2 Newbie
Eileen2
Posted

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. 

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trents Grand Master
trents
Posted

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 Newbie
Eileen2
Posted
  • Author

Thank you very much 😁

Scott Adams Grand Master
Scott Adams
Posted

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:

 

  • 2 weeks later...
Bronwyn W Apprentice
Bronwyn W
Posted
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

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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