Colonoscopy with large area of inflammation

[growlinhard1]

I'm having all the celiac sx ~ frequent gas and belching, major constipation which is new, feeling extremely full after eating a small amount and then feeling starving again in an hour or two, frequent urination, itchy skin, hair thinning, stomach bloating, unexplained weight loss of 15 pounds to date, major depressive episodes, irritability and feel weak and unwell all the time. I had a colonoscopy in January which showed a large fold with inflammation that was biopsies. The pathology came back as inflammation. At my gastroenterologist colonoscopy follow up visit, it was decided that I needed a egd with biopsy to see if I have ulcers or celiac. I should also say I have had psoriasis since I was 16 and I'm now 63. Since I have been scouring the internet looking for what may be happening, the doctor mentioning celiac and seeing how my symptoms match it so closely I decided to start cutting out gluten. My biopsy is in a month and if not eating gluten makes me start to feel better, why would I want to continue feeling soo terrible by eating it for a diagnosis? How would a diagnosis benefit me enough to prolong my absolute misery for another month? What does everyone think? Am I missing something?

[trents]

Welcome to the forum, @growlinhard1!

If eliminating gluten from your diet makes significant improvement in your symptoms then there are two possibilities. Either you have celiac disease (aka, gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity, aka, gluten sensitivity). The difference is that celiac disease is an autoimmune disorder that creates inflammation and, over time, damages the lining of the small bowel which inhibits nutrient absorption whereas NCGS does not damage the lining of the small bowel. They share many of the same symptoms. At the end of the day, the antidote for both is to abstain from foods that contain wheat, barley or rye, the three gluten-containing grains.

Some countries supply stipends and healthcare benefits for those with an official celiac diagnosis. If you live in the USA that does not apply. The main reasons for seeking an official celiac diagnosis are psychological and social. Many people have a hard time not falling off the gluten free bandwagon without an official diagnosis. They find it easy to rationalize it all away as being temporary or due to something else. When you have an official diagnosis, you tend to take gluten-free eating more seriously. Socially, family and friends are more likely to respect and attempt to comply with your need to eat gluten free if you have an official diagnosis of celiac disease. Your physician is more likely to take you seriously as well if you have an official diagnosis because there are typically other health problems that are spinoffs which develop from celiac disease in time. One autoimmune disease invites others.

There are no tests for NCGS. Celiac disease must first be ruled out. We do have specific tests for celiac disease. By the way, some experts believe that NCGS can transition into celiac disease. If your endoscopy/biopsy is only a month away, I would encourage you to stick it out and go back on gluten to get an official diagnosis. You still have time to get a valid test result if you start back on gluten now, 10g of gluten daily which is about the amount found in 4-6 slices of wheat bread.

[growlinhard1]

Thank you for the response. I didn't think of  the things you presented but they make a ton of good sense. I'm in the USA so no stipend for a formal dx. With the added cost of gluten free food, I wish there was some program to help. I bought a loaf of gluten free bread that cost $7.99 and my usual multi grain is $2.57! 

I REALLY felt the doctors taking you more seriously comment. That is a huge issue. I just had fairly extensive blood work done, none of which was testing for celiac, and everything came back normal. I felt completely dismissed by my doctor even though my symptoms remained unchanged. As a matter of fact, Celiac disease wasn't even on my regular doctors radar. I think after studying the symptoms and comparing them with my symptoms that should have been one of his top differential diagnoses.

I will follow your advice and wait until after the bx to begin eating gluten free. I'm fairly certain of the diagnosis at this point because 4 days of no gluten has made a difference. I feel somewhat stronger, nowhere near as anxious or irritable, urinating every 2 hours instead of every 30 minutes to an hour and much less nausea. 

If anybody has any other words of wisdom, advice, really anything, please let me know..I'm kind of alone in this.

[trents]

Sounds like your doctor is not very knowledgeable about celiac disease and may not be supportive of your efforts to run this down. Unfortunately, there is still a lot of ignorance in the medical community with regard to celiac disease. He/she may not even know what tests to run. Those of us who have been on the celiac journey for sometime have come to realize we need to be our own advocate and need to be appropriately assertive in order to get proper testing done. So, when the day comes for the appointment, here are some recommended tests you should discuss with your doctor that are celiac specific:

At the bare minimum, the doctor should or:

1. total IGA. This test checks for IGA deficiency. If you are IGA deficient, then next test, #2 below, will give falsely low scores and may produce a false negative.

2. tTG-IGA This is the centerpiece of celiac disease testing and is the most popular test run by doctors.

If  the doc is willing, ask for these in addition:

3. DGP-IGA

4. DGP-IGG

5. tTG-IGG

These five tests would constitute a fairly complete celiac panel and give fuller picture. What one test may miss another may catch. Here is an article giving an overview of celiac disease blood antibody testing, the relative sensitivities and accuracies of each test. The one test mentioned in this article I did not include in my list is the EMA which is not used often anymore. It is expensive to run and has largely been replaced by the tTG-IGA.

One other thing to be aware of and that is if there are positives in the antibody testing, you likely would get a referral to a GI doc who may want to do an endoscopy with biopsy of the small bowel lining to confirm the antibody testing results. You would needs to still be consuming gluten for this one as well.

[Scott Adams]

I had a doctor for a few years too long who would always begin any response to nearly any question or comment I had, especially if I requested any type of test, with: "Mr. Adams, it looks like you've been doing some Google searches..." He never took me seriously, even when my total cholesterol levels were routinely over 300 and my father died in his 40's of a heart attack. Needless to say, I switched doctors and now have one that is in my corner.

[growlinhard1]

I haven't had any of this blood work and my GI doctor immediately scheduled the endoscopy with biopsy based on the large area of inflammation found during my colonoscopy and me relating all the other symptoms I'm experiencing. If the blood testing is positive do you still have to have the endoscopy with a positive biopsy to be definitively diagnosed with celiac? Seems like a waste of money and risk to do it backwards 😕 

[Scott Adams]

Unless your blood antibody levels are 10x the celiac disease positive level they usually do an endoscopy to confirm the diagnosis. 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[trents]

Usually, the blood testing is done first and the endoscopy/biopsy follows for confirmation if there are positive antibody test scores. Historically, the endoscopy with biopsy has been considered to be the gold standard for diagnosing celiac disease. If the tTG-IGA scores are very high (5x-10x normal), some doctors will forego the endoscpoy/biopsy and grant a celiac disease diagnosis without it. So, if you are starting with the endoscopy/biopsy that may be all you need to arrive at a diagnosis. Another possibility would be for the GI doc to do a blood draw for antibody testing on the same day you come in for the endoscopy/biopsy.

Edited February 5, 2025 by trents

[growlinhard1]

I had the endoscopy with biopsy done. I have gastritis and duodenitis at this point. The biopsy should provide the cause of the inflammation findings. How common are these findings when Celiac is the ultimate culprit?

[trents]

Just judging from the reports we get from forum members sharing their endoscopy results, very common. But we also get a lot of reports of inflammation in those areas coupled with a negative biopsy for celiac. But I wonder if in a lot of those latter cases we are seeing NCGS or a transition from NCGS to celiac. I have no scientific data to support that. It's just a hunch.

Edited February 18, 2025 by trents

[growlinhard1]

I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.

[trents]

Because you have already had the "gold standard" test done, and because you have some experiential evidence that removing gluten from your diet causes you to feel better, it would make sense to begin the gluten-free diet as you wait for biopsy results.

[growlinhard1]

Thank you, I appreciate the response. I'm going to begin the gluten free diet and wait for the biopsy results. I feel fairly certain that it's the right thing for my well being. I will keep you posted.