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 February 4 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.

 

[trents]

There are third party home test kits for celiac disease that do not involve needles. They use a cheek swab I believe. The cost is a little over $100 USD I believe for most of them. 

A 7 week "gluten challenge" should be more than enough. The absolute minimum according to guidelines is 2 weeks but I would not cut it that close. I usually recommend four weeks but the more the better in so far as ensuring valid testing.

"My daughter was told by her doctor to eliminate american grains due to the fortifying process." What's this about? Are you referring to the vitamins and minerals added to processed cereal grain products in the USA? Is this supposed to be harmful according to this doctor? What kind of doctor is this? MD? Naturopath? What is interesting is that when people go gluten free they often need to supplement with vitamins and minerals to compensate for the loss of vitamins and minerals they were getting in wheat products. Most gluten free facsimile flours are nutritionally bankrupt. 

Yes, there is a significant statistical correlation between Hashimotos and celiac disease. Autoimmune disorders tend to cluster.

Omeprazole and other PPI meds are concerning when used long term in that they raise gut PH (lower acidity) and inhibit the digestion and assimilation of nutrients. They are some of the most over prescribed and under monitored meds in all of pharmacology. I was on Omeprazole for years and weaned myself off it. It was a real fight because of rebound. I bridged with TUMS which is much better option when used for spot coverage. The interesting thing is, a lot of GERD is actually caused by hypoacidity rather than hyperacidity. If you have a lot of GERD you might want to look into MCAS (Mast Cell Activation Syndrome)/histamine intolerance which is another medical problem very common in the celiac community.

Edited February 4 by trents

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[cameo674]

  On 2/4/2025 at 8:12 PM, trents said:

"My daughter was told by her doctor to eliminate american grains due to the fortifying process." What's this about? Are you referring to the vitamins and minerals added to processed cereal grain products in the USA? Is this supposed to be harmful according to this doctor? What kind of doctor is this? MD? Naturopath? What is interesting is that when people go gluten free they often need to supplement with vitamins and minerals to compensate for the loss of vitamins and minerals they were getting in wheat products. Most gluten free facsimile flours are nutritionally bankrupt. 

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Trents: Due to a genetic mutation, my daughter has inherited from both parents she cannot process the Folic Acid provided in the fortified American grains.   An MD told her to avoid eating fortified grains.   My daughter makes the assumption that unless she makes the food item, that the baker used a fortified grain so she has been limiting her gluten intake since 2020.   Her Psychiatrist was who tested her for MTHFR gene issue because she suffers from depression and severe anxiety. The Psychatrist also instructed my daughter to supplement with a methylated version of folate once she knew my daughter was homozygous, because the methylated version bypasses the mutated gene step so her body can absorb it.  Low folate absorption impacts serotonin and dopamine production.  My husband and I also both have two other homozygous gene mutations that interfere with vitamin absorption: MTRR and VDR taq.  The first interferes with B-12 absorption which requires us to take a methylated B-12 vitamin and the second with Vitamin D absorption so we have to take higher doses to stay within normal levels.  
My brother, who has the exact same gene mutations, went through 10x health genetic testing for vitamin supplements (paid by his employer) and received a huge report saying the same things about which types of supplements had to be taken.  Gary Brecka does videos on how these gene mutations impact the vitamin absorption pathways.  
 

 

If my brother had not gotten his testing through work, he would never would have started his supplement journey.  His testing is what triggered my getting functional health testing that tested similar biomarkers to his.  Again the celiac testing was an add-on test that I did off the cuff.  

[cameo674]

I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.  
 

I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  

[trents]

Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it.

To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.

[cameo674]

Because of my brother’s supplement regime and my and my husband’s known gene mutations, all of the kids (26,28,30 - I should not call then kids) take PureTherapro RX Methyl Multi without iron, the MagTech magnesium supplement with 3 forms of magnesium, and D3.  I am still trying to find a Fish Oil supplement for them that comes in smaller size capsules.  I take the Metagenics lemon flavored Fish Oil Epa Dha 1000mg gels and the kids call them horse pills.  They want something 1/2 that size bur don’t have a fishy taste. 

[Beverage]

  On 2/5/2025 at 2:14 AM, cameo674 said:

 Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  

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Tums is an antacid.  Calcium (also vitamin D) need it acidic for absorption, so you're not really getting any calcium benefit.  Try DGL, it coats rather than counteracts acid. You need acid anyway to digest and get those vitamins. It's usually not too much acid that causes heartburn, it's not enough acid which causes food to rot and ferment in the stomach. Try DGL, everyone I've gotten to actually try it has had great relief.

https://www.amazon.com/dp/B001IAJW0K

 

[cameo674]

Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.  
 

Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.