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How To Live With Those Who Don't Have Celiac


JHuffington

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JHuffington Newbie

My name is Jon, I'm 40 and this is my first post.  I was recently diagnosed with Celiac.  I'm still trying to figure out the in and outs of this disease, so it has been frustrating for me.  When I received the diagnosis I said to myself, "big deal, all I have to give up is wheat bread."  The doctor at that point told me it was a little more complicated than that.  I was shocked at how many things gluten is in, even some prescription drugs.  

 

I'm scheduled to see a nutritionist next week, but until then, I've been reading everything I can get my hands on.  At this point, I'm extremely paranoid about what I'm eating.  I have just gone through 7 weeks of nasty symptoms and I don't want to consume any gluten.  Since I know so little about the disease I've been buying boxed "Gluten Free" foods (I generally don't eat a lot of processed stuff).  

 

My question is this.  How concerned should I be about my household family members and the cookware, utensils, plates, toaster, etc. that we use?  My family eats a lot of products with gluten in it.  Do I need to go buy new stuff for me only?  Can I use the toaster?  What about the colander that we generally put whole wheat spaghetti in?  Can gluten get on plates?  I have no idea what I'm doing, so any help would be much appreciated.

 

I look forward to talking to you.

 

Thanks,

Jon

 

 


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notme Experienced

hi, jon - welcome to the forum.  most of us were clueless when we were first dx'd, so don't feel alone!  there is a thread on the 'coping with' section of the forum called 'newbie 101' - go ahead and read it.  it has alot of helpful info that you won't get from a dr or nutritionist.  you and your family will have to make adjustments but living in a shared household is do-able.  i have a shared house/kitchen, although my husband (who is not celiac) eats gluten free meals, mostly.  (sometimes he gets bread, but he has to keep it quarrantined lolz)  it was a pain at first, but it becomes second nature.  certainly better than being sick all the time!  good luck!  :)

SkyBlue4 Apprentice

Hi Jon!

I am learning the in's and out's to this diet myself and learning more everyday.

I live with gluten consumers and it has not been easy so far. I am the main cook in the house so I have control over some of the meals. Here's what I just did to prep my own kitchen recently... https://www.celiac.com/forums/topic/105006-nesting/?hl=nesting

 

You should definitely read the newbie 101 thread Arlene mentioned... https://www.celiac.com/forums/topic/91878-newbie-info-101/  Tons of good tips and advice there. You'll need to spend some time reading and learning where there is hidden gluten and how and where cross contamination occurs. 

 

You can ask questions as you go. There is a wealth of experience to draw from here and everyone is very helpful!

JHuffington Newbie

hi, jon - welcome to the forum.  most of us were clueless when we were first dx'd, so don't feel alone!  there is a thread on the 'coping with' section of the forum called 'newbie 101' - go ahead and read it.  it has alot of helpful info that you won't get from a dr or nutritionist.  you and your family will have to make adjustments but living in a shared household is do-able.  i have a shared house/kitchen, although my husband (who is not celiac) eats gluten free meals, mostly.  (sometimes he gets bread, but he has to keep it quarrantined lolz)  it was a pain at first, but it becomes second nature.  certainly better than being sick all the time!  good luck!  :)

Thanks for pointing me to the Newbie 101 section; I didn't know where to start or even where to post.  Last year I went through being diagnosed with Diabetes, so I'm used to change.  Hopefully dealing with celiac disease will become as second nature as diabetes has.  It's nice to meet you and thanks for your help.  

JHuffington Newbie

Hi Jon!

I am learning the in's and out's to this diet myself and learning more everyday.

I live with gluten consumers and it has not been easy so far. I am the main cook in the house so I have control over some of the meals. Here's what I just did to prep my own kitchen recently... https://www.celiac.com/forums/topic/105006-nesting/?hl=nesting

 

You should definitely read the newbie 101 thread Arlene mentioned... https://www.celiac.com/forums/topic/91878-newbie-info-101/  Tons of good tips and advice there. You'll need to spend some time reading and learning where there is hidden gluten and how and where cross contamination occurs. 

 

You can ask questions as you go. There is a wealth of experience to draw from here and everyone is very helpful!

I just read your previous post about how you are handling your kitchen.  Really good information.  I would have never thought about a lot of those things.  Thanks so much for your help.

powerofpositivethinking Community Regular

hi jon and welcome!

 

before you spend money on your nutritionist appointment I'd suggest visiting this page Open Original Shared Link

 

make sure you see a registered dietician (RD).  In addition, at the above link make sure the RD you see has both experience in diabetes and gluten intolerance/celiac disease.  the link above will allow you to search by expertise.  If the RD you are scheduled to see doesn't have specific expertise in the two areas, I'd suggest canceling the appointment and finding one who does.

 

hope this helps!

JHuffington Newbie

hi jon and welcome!

 

before you spend money on your nutritionist appointment I'd suggest visiting this page Open Original Shared Link

 

make sure you see a registered dietician (RD).  In addition, at the above link make sure the RD you see has both experience in diabetes and gluten intolerance/celiac disease.  the link above will allow you to search by expertise.  If the RD you are scheduled to see doesn't have specific expertise in the two areas, I'd suggest canceling the appointment and finding one who does.

 

hope this helps!

Honestly I don't know if she does or not; you make a really good point.  I'll contact her and make sure.  She helped me with IBS (which was what the doctor initially thought it was), but I'm not sure if knowing about IBS would translate into Celiac nutrition.  And I'll check out the link.  Thanks so much for your help.


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IrishHeart Veteran

Hey Jon,

 

I also suggest reading the book Real Life With Celiac Disease by Melinda Dennis and Daniel Leffler.

Tons of excellent advice by 50 celiac experts--on everything from the diet to living with WEs to nutritional advice to what the disease is all about. This book is awesome. Trust me!

 

Here is another helpful article on tips for living with WEs (wheat eaters) and how to avoid cross contamination in the kitchen and in  your home.

 

 

Open Original Shared Link

 

Anything else you need, just holler. And "IBS" is not the same as celiac and I think you will be pleased to see that "IBS" go away on the gluten free diet. My "IBS" surely did! :)

 

If I were in your shoes, I'd find an endocrinologist's RD who can help you figure out the best

diet for your diabetes and celiac.  Call the endo's office or your local hospital.

 

You can do this. Welcome to the forum and the celiac family. 

IH

JHuffington Newbie

Hey Jon,

 

I also suggest reading the book Real Life With Celiac Disease by Melinda Dennis and Daniel Leffler.

Tons of excellent advice by 50 celiac experts--on everything from the diet to living with WEs to nutritional advice to what the disease is all about. This book is awesome. Trust me!

 

Here is another helpful article on tips for living with WEs (wheat eaters) and how to avoid cross contamination in the kitchen and in  your home.

 

 

Open Original Shared Link

 

Anything else you need, just holler. And "IBS" is not the same as celiac and I think you will be pleased to see that "IBS" go away on the gluten free diet. My "IBS" surely did! :)

 

If I were in your shoes, I'd find an endocrinologist's RD who can help you figure out the best

diet for your diabetes and celiac.  Call the endo's office or your local hospital.

 

You can do this. Welcome to the forum and the celiac family. 

IH

Thanks for the great advice!

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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