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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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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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