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Newly Diagnosed- Need Help!

eblue

Recommended Posts

eblue Apprentice
eblue
Posted

Hey everyone,

So I am new here. After 4 years of being misdiagnosed I tested positive for Celiac disease last week. I went through 4 horrible years of bloating, weight loss, stomach cramps, gas, diarrhea, body aches, brain fog, and constant fatigue. I am so thankful for a diagnoses with the hopes of feeling back to normal soon.

 

But I am also very overwhelmed!

 

There is so much more to this than I thought. Do any of you have any advise? I am trying to learn all of the things that gluten is "hidden" in so that I can be very careful to remove it 100 percent from my diet. I know the obvious things like wheat, barley, and rye..but I am learning that there are other things to look out for such as Malt and modified food starch. Any suggestions or knowledge..? 

 

Also, what about things such as lip stick, lotions, and shampoos/ conditioners? Is there a certain brand I should buy?

 

I would be very appreciative of any advise/wisdom!!

 

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shadowicewolf Proficient
shadowicewolf
Posted

Modified food starch does not contain wheat in the US i believe.

 

Go read the Newbie thread in the coping section, it will help you alot.

tasha71577 Newbie
tasha71577
Posted

I am in the same boat as you. One of the surprises for me was that Soy Sauce contains gluten unless you buy gluten free. So do many asian sauces. I spent a lot more time food shopping in order to shop gluten free. Once suggestion my mother in law had that worked was to go to customer service at the supermarket and ask for a list of gluten free foods they carried. I was at a speciatly supermarket and they were able to provide it. It really helped me shop. Good luck.

 

I was also told to go dairy free, which makes it doubly difficult.

IrishHeart Veteran
IrishHeart
Posted

Welcome to the family!  

 

May I direct you to: 

 

(1) this thread for newbies--please read it--lots of good info there (some lady I know wrote it  )

 

http://www.celiac.co...ewbie-info-101/

 

 

 

and  

(2)   I recommend:

 

"Find Me Gluten Free"  for dining out

 

and

 

(3) I also HIGHLY recommend this must-read book:

 

Real Life with Celiac Disease

by Melinda Dennis and Daniel Leffler

 

Best wishes to you! we're here for you!

 

I promise you, soon you will see that all your favorite foods are not gone forever--they are just made with different flours.  We all eat plenty!!

 

I love this website too!!!

 

Open Original Shared Link

 

IrishHeart Veteran
IrishHeart
Posted

.

 

I was also told to go dairy free, which makes it doubly difficult.

 Lactose intolerance is temporary for the majority of celiacs.

 

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

 

Give it a few months and try it again.

 

best wishes.

bartfull Rising Star
bartfull
Posted

And don't be surprised if you break down and cry at the grocery store a time or two. I think most of us did at the beginning. Not only are you learning a new way to eat, but your body is going through real withdrawal which will make you more emotional than usual. It felt like the end of the world at first, but honestly, not only will you adapt, but you will THRIVE.

 

But if you need to come here and rant and cry and have a total meltdown, feel free. We have all been there, and we will give you the hugs and advice and support that you need.

 

 

OH LOOK!! There's one now!!!  ((((((HUG))))))

tasha71577 Newbie
tasha71577
Posted

 Lactose intolerance is temporary for the majority of celiacs.

 

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

 

Give it a few months and try it again.

 

best wishes.

Thank you for the info. If I could have dairy, the gluten free diet would be a lot easier.

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GlutenStinks15 Explorer
GlutenStinks15
Posted

One of the first things I did (after I joined this page) was see a nutritionist. She told me exactly which deficiencies my doctors should be testing for and gave me lots of great info.

 

Definitely check out the links people have given you above, and buy the Cecelia's Marketplace Gluten Free shopping guide (it's in the newbie thread) - that book has proven to be worth its weight in gold.

 

You may be feeling overwhelmed and frustrated, but I do promise it will get easier. I'm almost 8 weeks in and I'm already doing so much better and my outlook is a happy one.

GottaSki Mentor
GottaSki
Posted

Nothing to add to the advice already offered.....just wanted to say:

 

Welcome eBlue and GlutenStinks15 too :)

foam Apprentice
foam
Posted

Thank you for the info. If I could have dairy, the gluten free diet would be a lot easier.

 

There's practically no lactose in firm cheese and yoghurt, most people will tolerate those just fine. But it depends on just how much damage is done. If your not struggling to digest foods and not at the leaky gut stage where you need to avoid grains and nuts then I'm thinking cheese and yoghurt will do you no harm.

eblue Apprentice
eblue
Posted
  • Author

 

Welcome to the family!  

 

May I direct you to: 

 

(1) this thread for newbies--please read it--lots of good info there (some lady I know wrote it  )

 

http://www.celiac.co...ewbie-info-101/

 

 

 

and  

(2)   I recommend:

 

"Find Me Gluten Free"  for dining out

 

and

 

(3) I also HIGHLY recommend this must-read book:

 

Real Life with Celiac Disease

by Melinda Dennis and Daniel Leffler

 

Best wishes to you! we're here for you!

 

I promise you, soon you will see that all your favorite foods are not gone forever--they are just made with different flours.  We all eat plenty!!

 

I love this website too!!!

 

Open Original Shared Link

 

 

Thank you so much!!

eblue Apprentice
eblue
Posted
  • Author

And don't be surprised if you break down and cry at the grocery store a time or two. I think most of us did at the beginning. Not only are you learning a new way to eat, but your body is going through real withdrawal which will make you more emotional than usual. It felt like the end of the world at first, but honestly, not only will you adapt, but you will THRIVE.

 

But if you need to come here and rant and cry and have a total meltdown, feel free. We have all been there, and we will give you the hugs and advice and support that you need.

 

 

OH LOOK!! There's one now!!!  ((((((HUG))))))

Thank you so much! I really appreciate all the support. It means the world!!

txgal748 Apprentice
txgal748
Posted

eblue,

 

it is tough.  I was diagnosed 1 year ago.  There is an app called "Is That Gluten Free?"  It is expensive ($8.99), but I use it several times while grocery shopping.  Eating out is difficult especially when meats are marinated with soy sauce.  I check out restaurants online menus to see if they have gluten-free menus. Some examples are Chili's, Outback, PF Changs, and Pei Wei.  I was slow in changing makeup.  The first was lipstick.  I purchase lipstick from Red Apple Lipstick.  I was used to paying less than $10 for lipstick, so it was difficult to pay $18.  It is worth it though since Red Apple Lipstick is gluten free and paraben free.  You would not believe all of the carcinogens in makeup.  Physicians formula has gluten-free powder foundation and eyeshadows, but not all of their products are gluten-free.  you should also check out the Celiac Diva.

 

Good Luck

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