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Second Opinion?!


cajun celiac

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cajun celiac Rookie

I was diagnosed by a gastro last week. I had never heard of Celiac and did not ask too many questions. Of course, now that I have done my homework, I am a total wreck. Should I get a second opinion? It is such a huge lifestyle change. Should I maybe have a different doctor review the labwork? Am I just desperate...?


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tarnalberry Community Regular

false positives are pretty much unheard of. it's worth getting the test results for yourself for a reference, but if you test positive, you have it.

it's a steep learning curve, but once you get past that and figure out how to adapt your preferences and life, you'll find that it's not nearly as bad as it seems. it's a habit to break, and there's mourning to go along with the loss, but there are a lot of very helpful people on the board to help you with all aspects of going gluten free!

Nantzie Collaborator

I agree with Tiffany. You could get a second opinion if it makes you feel more comfortable, but if it comes back as celiac, there's pretty much nothing else it could be. I know that must be hard to hear, but it will get easier. There is a lot to learn, but once you get the hang of it it's pretty easy actually.

It's overwhelming at first. The thing that I always suggest is picking a couple of gluteny things that you used to love and find subs for just one or two things at a time. You'll be surprised at how many things that can be made gluten-free AND are really yummy.

I have found that other than a few replacement foods, I eat a lot of mainstream foods.

This board is the best place to get recipes, product reviews and cooking tips.

So what are your top five foods you think you'll have to go without? You may be surprised at how much is easily replaceable.

Nancy

plantime Contributor

Celiac is like pregnancy in two regards:

1. False negatives abound, but not false positives

and

2. There's no such thing as "a little bit pregnant" or "a little bit celiac"

It is a learning curve, and the curve goes pretty much straight up. We are here to answer your questions and listen to your panics if you need us. {{{hugs}}}

SpikeMoore Apprentice

Hi and welcome

You will find this forum extremely helpful. I encourage you to research and read here. I'm a relative newbie too. I have found great help here and the experienced people that post here are very helpful both with knowledge and moral support.

I am guessing that you had some sort of symptoms to lead to a gastro's office. Try the diet and I think you will gain more in health benefits than you lose by not eating gluten. I thought it would be hard, but it's not too bad once you get the hang of it. Once I noticed how great I felt, I have no desire to eat what was hurting me.

plantime Contributor
Hi and welcome

You will find this forum extremely helpful. I encourage you to research and read here. I'm a relative newbie too. I have found great help here and the experienced people that post here are very helpful both with knowledge and moral support.

I am guessing that you had some sort of symptoms to lead to a gastro's office. Try the diet and I think you will gain more in health benefits than you lose by not eating gluten. I thought it would be hard, but it's not too bad once you get the hang of it. Once I noticed how great I felt, I have no desire to eat what was hurting me.

This is why I stuck with the diet when it seemed so overwhelming. I just felt so much better! Then I got my grandson. I want to live a long, healthy life so I can watch him grow up.

Carriefaith Enthusiast

Which test(s) did you have done. A false positive is rare...

I know that the gluten-free diet seems really overwhelming at first, so many labels to read, so much research, so long at the grocery store, need to modify recipes. But after a while these things won't seem so difficult. Now I just fly through the grocery stores, I know where everything is and what I need.

I have started a thread on gluten-free recipes which could help get you started: Open Original Shared Link I also recommend investing in a gluten-free cookbook.


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rez Apprentice

Did you get biopsied? The bloodwork is the first step and is usually followed by biopsy to confirm the diagnosis.

debmidge Rising Star

don't forget Nini's newbie info...I just don't know where on board to get this, so if someone could post those instructions as cajun will probably need more info in the meanwhile.

Somehow you're supposed to click on Nini's signature but it didn't work for me the last time I tried it.

psawyer Proficient

Here's a link to nini's page. The celiac newbie links are at the bottom of the page.

Open Original Shared Link

cajun celiac Rookie

Thank you to everyone that has responded. I've been on this site so much lately and it has been wonderful. I had an endoscope done with a biopsy and that came back suggestive of Celiac. I have done bloodwork since and am going gluten-free...I meet with my gastro in 3 weeks for a follow up. Unfortunately, only two days after being gluten-free I had a normal "potty" which I am afraid confirms I need to stay off the gluten. I am depressed and feel like I'm in a prison. I get sad when I realize that one day I'll probably forget what Pappa John's pizza and Olive Garden breadsticks taste like. It's good to read entries from those of you that seem to be pros. I know I'll get there someday.

babygirl1234 Rookie

its hard at 1st but once you know what you can And cant have you will start to feel much better

Rikki Tikki Explorer

Jillian:

It does seem overwhelming at first, but once you get the hang of it it's not so awful. I am with you though, I do crave a good pizza and wish I lived in New Youk, or could visit there because I have heard they have pizza places that make gluten-free pizza, wow!

Ask any questions you want, people here are very helpful, and welcome!

tarnalberry Community Regular
I am depressed and feel like I'm in a prison. I get sad when I realize that one day I'll probably forget what Pappa John's pizza and Olive Garden breadsticks taste like. It's good to read entries from those of you that seem to be pros. I know I'll get there someday.

The 'prison walls' are as big as you make them - remember that many people in the world never eat wheat.

And you'll also forget what constant diahreah is like. What constant bloating or stomach pain is like. You'll forget all those negatives too. And you'll learn a bunch of new positives as well.

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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