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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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    • trents
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      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
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      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
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