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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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    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
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