Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

[cameo674]

Still waiting to get into the doctor to discuss my test results and see if further testing like a biopsy is necessary. My appointment is in June 2025.  Yep it takes that long to get in to see the doc.  
 

Anyway, I paid to have some functional health bloodwork done in December 2024.  I got the results just after Christmas. Because my middle child suffers from bloating and she asked if I ever considered that I might be gluten intolerant or have celiac disease, I added the celiac blood tests to the testing that I was having completed.  That child has panic attacks when a needle goes near her; so, I decided to do the testing to see if she needed to move forward with testing for herself.  
My test results were: Deamidated Gliadin (IgA) - 53.8 U/mL; Deamidated Gliadin (IgG) - 250.0 U/mL; Tissue Transglutaminase (IgA) - 44.0 U/mL; Tissue Transglutaminase (IgG) - < 1.0; and Immunoglobulin A (IgA) - 274.0 U/dL.

The first 3 are out of range and the 2nd two are in range.  That company does not offer the Cyrex array 3 & 4 so I could go in armed to my appointment with further information.  I have read the article that seems to be posted as a reply for most of the posts in this forum.  
First of all, I never thought I had an issue with gluten, because I never associated flatulence or constipation with gluten. I know I am lactose intolerant.  As I have gotten older, I’m in my late 50’s, I have decreased my bread/pasta intake 4 or 5 years ago, because I have been trying to increase my protein intake which is hard for me to do since I don’t really like protein most the time.  My friend who is a nurse said that I should not go on a gluten free diet until a doctor decides whether or not I need a biopsy which may take a few months to get on a doctor’s schedule based on how long it will be just for my initial visit.

So my question is this, wouldn’t the gastro doc, who did my colonoscopy when I turned 50 when I did not have a restricted gluten diet, have noticed that I had celiac if I had it? Or are there zero visible changes to the colon it’s self?   I did not have any polyps so no biopsies were preformed as a result of that preventative colonoscopy.

 

 

 

 

 

 

[trents]

Welcome to the forum @cameo674!

First, let me correct a misconception you have about celiac disease and intestinal anatomy. Celiac disease does not affect the colon. It damages the lining of the small bowel which is on the other end of the intestinal track from the colon. The small bowel, the duodenum, is the part of the intestines right below the stomach. So, your colonoscopy would not have been examining that area. The scope just won't go up that far. Examination of the small bowel is done with an endoscopy, not a colonoscopy. The go in through the mouth, the stomach and into the upper part of the intestines. 

People with celiac disease experience an autoimmune response when gluten is consumed that generates inflammation in the lining of the small bowel which, over times, wears down the millions of tiny finger-like projections that constitute this lining. We call those finger-like projections "villi" and the lining is termed the "villous lining" of the small bowel. The inflammatory response by the immune system perceiving gluten to be an invader threat produces antibodies that can be measured in the blood. This is what was what those tests were done for that you posted in your opening narrative. The villous lining of the small bowel is where all of the nutrition is absorbed from the food we eat. The constant inflammation of celiac disease over time wears down these millions and millions of tiny finger-like projections and greatly reduces the efficiency of nutrient absorption. Hence, it is common for those whose celiac disease has been undiagnosed for a long time and who continue to consume gluten develop health problems that are related to nutritional deficiencies, even though they may be eating well.

Your test results do indicate you have celiac disease. The most important of those tests you listed is the Tissue Transglutaminase (IgA) - 44.0 U/mL and it was "out of range". We abbreviate this as tTG-IGA. I take "out of range" to mean it was elevated. You did not include the reference ranges used by the lab for the tests so I am assuming "out of range" means positive or high. There are no industry standards for reference ranges for these tests. Each lab uses their own because they each build the tests a little differently or may use different units to express the results.

Normally, if any of the celiac blood antibody tests are positive, a GI doc will want to perform an endoscopy with biopsy of the small bowel lining to microscopically check for damage to the villous lining. This is confirmation of the blood antibody testing. Sometimes they will forego the endoscopy/biopsy if the tTG-IGA score is very high. But it is very important that you not begin to cut back on gluten until all testing is complete. Doing so will allow healing of the small bowel lining to begin and will likely invalidate the testing. It is recommended that people consume at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) in the weeks leading up to the endoscopy/biopsy. 

Finally, it sounds like your middle child also needs to be tested for celiac disease. A couple of studies done with rather large sample sizes in the last couple of years showed that almost 50% of first degree relatives of those with celiac disease, when tested, also had celiac disease. Many of them were "silent". That is, they were largely asymptomatic.

Edited 1 hour ago by trents

[cameo674]

Thank you, Trents.  This is exactly why I ask questions.  The reference range was anything over 15 was out of range for all 3 antibody tests where I was out of range, Tissue Transglutaminase (IgG)<1.0 was the top of the normal range and 47-310 is the range for the IgA.  

I started limiting my gluten (American Grains) exposure in 2020 when my daughter tested homozygous for the MTHFR gene so the numbers in 2024 are definitely reduced from what they probably were in 2020.  My daughter was told by her doctor to eliminate american grains due to the fortifying process.  
 

I have been changing up my diet since 2018 when I could not stay out of the bathroom.  I attributed my stomach issues a generic medication that I had been taking for my lymphedema since they started at the same time. I had gone from being unable to use the bathroom to being unable to leave the house with spare clothes.  I mostly stick to a protein and a vegetable for my meals now-a-days.  Gluten exposure is usually through family events.  I just added pre and probiotics into my diet in 2024 because of gerd like issues that I was told was related to another gene issue.  I am trying to stop eating tums and Omeprazole like they are candy. 

I have Hashimoto’s so I always thought my ANA Pattern/Titer scores were just pointing to the thyroid issues not any other conditions.  
 

I will make sure that I restart/guarantee my gluten intake at the end of April before my June appointment.  7 weeks should be enough? Though 6 pieces of bread a day is a lot higher than I have ever consumed. 
 

I will prompt the kids to start their journeys.  They all have stomach issues, but their doctors were attributing them to various other reasons since no one in our family has ever been diagnosed with celiac.   Anxiety was always what the doctors said their stomachs hurt so they eat tums alot too.
 

Thank you again for your anatomy help. The people who I have personally known that had a celiac diagnosis got so sick when they accidentally consumed gluten that I never considered that I might have it myself.  I would not have done the test myself if my daughter wasn’t so anxious about needles.