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Celiac ? Those Already Diagnosed, Please Advise>


uncertainlady

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uncertainlady Newbie

Hello everyone.

I am new to this forum.

Here is my story...

I have suffered from gas, bloating, flatulence and pains for the past 6 years. I have been to several doctors and had a gastroscopy done years ago (that showed everything was fine), and doctors never took me seriously, so the doctor I had gave me a quick diagnosis - Irritable Bowel Syndrome.

I took matters into my own hands, and year by year have tried to figure out what it could be that causes my symptoms.

Only recently, in 2008, little by little, I started playing around with my diet and cutting out certain foods that I thought caused my gas a bloating, and here is what I've noticed...

I've completely cut out the following foods: bread (white, bagels, buns), whole wheat bread especially, pizza, burgers (now I'm suffering for Sunday's BK), beer, completely all pasta, and certain vegetables (perhaps because I've mixed them with gluten?). I may have forgotten something, but you get the idea...

Why? What happens if I eat above mentioned foods? The biggest most annoying "social" factor - flatulence. The need to go to the bathroom even though it isn't diarrhea (in most cases), terrible bloating, sometimes pain, but mostly it feels like something is blowing up in my stomach.

I was scheduled for colonoscopy and colposcopy but am afraid to do it because they give you general anesthesia.

I have been reading about the disease and I strongly suspect that it is what I've been suffering from the past years.

PLEASE, anyone and everyone who feels what I'm going through, give me some advice, some previous experience.

What tests are best to diagnose Celiac? What do you do when you get gas and bloating if you DO eat gluten? (I try chamomile tea, tums, rolaids, but nothing helps). What is the fastest and most effective way of diagnosing it?

I could follow the diet if I knew for sure that I am not allowed to eat these foods, but each time I tell myself "maybe this time will be ok" and it's not...

Please please, all advice will be appreciated.

Thanks so much.


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nora-n Rookie

Hi, firstly there is nothing I know of that can reduce gas and bloating if you are celiac and eat gluten, besides maybe large doses of prednisolone but you do not want that...

I never had general or any anesthesia during endoscopies. Here in Europe only children get that. We grown-ups only get a numbing spray into the back of the mouth. Endoscopy only lasts for a couple-three minutes and the discomfort passes quickly.

Endoscopies usually dannot diagnose you unless you have been eating a lot , I mean a lot of gluten for at least six weeks, better at least three months before the procedure. They only look for large damage to the villi. If you only have increased leucocytes (=signs of inflammation) they will still not diagnose you, usually. Some places they do. (I have read about patients sending off their slides for a second opinion and they did get a diagnosis based on that, plus symptoms)

There is no point in going through an endoscopy if you are off gluten.

If you do not need an official diagnosis, you might try a gluten-free diet, but afterwards an officcial diagnosis will be difficult. Happende to me (but I had the blood tests first)

nora

ShayFL Enthusiast

You have found your answer. But if you NEED an official Dx then you will have to start eating all of those gluteny things again and LOTS of them for 3 months before blood/biopsy tests. Otherwise you can get a false negative.

If you dont want to put yourself through that hell, you can use Enterolab. They do not Dx Celiac, but they can tell you if you are intolerant and if you are malabsorbing. You can also opt for their genetic tests to see if you even have the Celiac genes.

Let's say that Enterolab shows gluten intolerance and a Celiac gene. That could be enough to keep you on the diet.

Or you can suck it up (because you know the truth that gluten hurts you) and go 100% gluten-free and heal and get on with a healthy life.

Celiac or no....you appear gluten intolerant. The cure is the same either way....gluten-free diet.

oliviapal Newbie

HI, FEW GOOD DOSES OF ALOE VERA GIVES ME RELEAVE AND CUTS OF ONE OR TWO WEEKS OF PAIN ETC... ETC... LUCKLLY IT HAS BEEN LONG TIME I DO NOT NEED (I BECOMING MORE EXPERIENT AFTER 1 1/2 YEAR ON A DIET)

PS.: YOURS IS THE SAME AS MY HISTORY. I ENDED UP NOT BEEN PROPERLLY DIGSOSED DUE TO IMCOMPETENCE OF THE DOCTOR. ONE MORE OF THIS SAD BATLLE DOCTOR X PATIENT.

GOOD LUCK TO YOU, AND SAUDE. :)

leadmeastray88 Contributor

Hi there,

You've already received some great answers.

As for you gas issue, I only get it occasionally and don't take anything for it but I know my grandma takes Beano, and she swears by it.

Here's some info from the website:

What is Beano?

Beano is an all-natural solution for a completely natural problem. And almost any adult or teenager can use it.

Many people experience gas and discomfort after eating vegetables, grains, beans, legumes, and other wholesome or high-fiber foods. Even cereals, breads, nuts, and seeds can be problematic.

However, I found this in the FAQs:

Does Beano

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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