Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Second Opinion?!


cajun celiac

Recommended Posts

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...?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,823
    • Most Online (within 30 mins)
      7,748

    Hernaiz
    Newest Member
    Hernaiz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • sleuth
      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.