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Just Diagnosed With Celiac Disease


ChristenDG

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ChristenDG Rookie

So I was diagnosed with Celiac Disease on February 6th and I am rather overwhelmed right now... My doctor didn't give me a lot of information, just to get on a gluten-free diet. She gave a list of websites and I checked those out, but it just seems like a lot... At first I was super positive and thinking, "Oh ok, just change my diet, no big deal." Now though, it seems as though there is a lot more I'm going to have to change...

I've been reading, and I'm just not sure what all I should do. Do I really need seperate dishes? That's an expense I can't afford (cookware is not all that cheap...). Do I need my own seperate mayo, butter, etc.? Does my husband really need to brush his teeth before kissing me if he has eaten something not gluten-free?

Maybe it's a dumb question, but how careful should I be? And what all is necessary? I'm just feeling a little lost and I want to do things right so I can heal and finally gain some sense of normalcy, but it's just a lot to take in and I'm not sure what to do right now.

Thanks so much!


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Ziva Newbie

I can relate to what you are asking because I'm new at this also and have some of the same questions. I hope you get some good information. I need it too!

ravenwoodglass Mentor

So I was diagnosed with Celiac Disease on February 6th and I am rather overwhelmed right now... My doctor didn't give me a lot of information, just to get on a gluten-free diet. She gave a list of websites and I checked those out, but it just seems like a lot... At first I was super positive and thinking, "Oh ok, just change my diet, no big deal." Now though, it seems as though there is a lot more I'm going to have to change...

I've been reading, and I'm just not sure what all I should do. Do I really need seperate dishes? That's an expense I can't afford (cookware is not all that cheap...). Do I need my own seperate mayo, butter, etc.? Does my husband really need to brush his teeth before kissing me if he has eaten something not gluten-free?

Maybe it's a dumb question, but how careful should I be? And what all is necessary? I'm just feeling a little lost and I want to do things right so I can heal and finally gain some sense of normalcy, but it's just a lot to take in and I'm not sure what to do right now.

Thanks so much!

Yes you do need seperate mayo, nut butters, butter etc. You don't need to replace dishes but you do need a seperate, new toaster and new strainer for gluten-free pastas. And yes your DH does need to brush his teeth before kissing if he is a gluten eater or drinker.

You should replace scratched non-stick cookware and cutting boards and wooden utensils.

You do have to be very careful as celiac is autoimmune and it takes very, very little to set the antibodies into action. The best way to stay safe and heal fastest is to eat whole unprocessed foods. You may go through withdrawl so if you get a bit moodier than usual for a week or two know that will pass.

It does get a bit overwhelming at first but it will be worth it in the end. Welcome to the board and read as much as you can. Feel free to ask any questions needed and I hope you are feeling better soon.

Cara in Boston Enthusiast

My nutritionist gave us this advice:

First, replace the obvious contaminated items (pasta strainer, toaster, wooden cutting board and wooden utensils.) Things that go into the dishwasher and are non-porous should be fine. If you use a toaster oven, you can continue to use it, just put your bread on a piece of foil so it doesn't touch the toaster. You do need your own condiments - anything you spread with a knife. Squirt bottles (mayo, mustard, etc.) should be fine. Don't forget to get a new toothbrush for yourself.

If after several months you are still getting glutened (and we were) you need to go to the next level. Replace non-stick pots and pans, etc.

Be careful not to share things with the gluten-eaters in your house (like a sip from his water bottle) . . .

At first we were buying products that contained no gluten ingredients. After failing the 6 month blood test (no change in son's levels) we had to also eliminate foods processed in a facility that also processes wheat. I kind of wish we had just started out with that rule and not wasted so much time getting healthy.

Some advice from me:

The gluten-free products you might purchase to replace your old favorites (sandwich bread, waffles, bagels, pasta, etc.) are all pretty void of actual nutrition. They taste good and can help make the transition easier, but don't make them a part of your long term plan. Logically I should have lost weight when switching to gluten-free (no more impulse eating while out - donuts, pizza, fast food, processed junk food, etc.) but I put on 10 pounds in 6 months! Now that I steer clear of the "replacement" food and just eat naturally occurring gluten-free food (lean meats, fruits, vegetables, nuts, rice, quinoa, etc.) I am back on track.

Don't forget to check your medicine cabinet and any vitamins you may take. I found gluten in my B Complex . . . Lipstick too . . .

The first few weeks (months?) can be hard, especially shopping. But after a while, you learn what brands are safe and you get into a groove. And your craving for bread will actually diminish . . . .

Cara

ChristenDG Rookie

Thanks so much! I know a lot of this information is already on the forum boards, so I apologise for repeating!

I just finished going through my vitamins and medications and fortunately my Super B-Complex was the only thing not gluten-free. I found this website also, which could be helpful to others: Open Original Shared Link.

Fortunately, It's just me and my husband so I think transitioning will be a lot easier than if there were children and/or other family members. I was kind of freaking out at first and thinking, "Oh my goodness! How am I going to manage?" But it doesn't seem so bad.

Thanks so much! I may become a regular around here... ;)

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
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    • JoJo0611
      Thank you this really helped. 
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