Not understanding endoscopy, blood test results, should I get a second opinion?

[CuriosityKilledtheCeliac]

Apologies if this should be posted elsewhere, not fully understanding endoscopy/blood results after having more time to process and having been on the gluten-free diet for about 2 months. I've been doing a lot of research, read a book about it, and just trying to understand how to deal with Celiac on a daily basis. However, now that I've been on the diet for 2 months, and life has settled down for me, I'm wondering if I should get reevaluated for having the disease in the first place.

For context of the whole situation, was dealing with a significant amount of stress related to work, life, essentially everything going on at the time, I decided to go to the Doctor for the first time in a while and get checked out for everything. My mother is Celiac, so I figured I would test for it as I was not feeling well at the time, having Diarrhea a lot. Granted, I've never had these issues before, consumed wheat all of my life. So I took the blood test, and everything was normal aside from the IGA levels being >250.0 H. With that result, they recommended me to go see a GI, which I did. However, between the time of me taking the blood test and me going to see the GI, the stressful situations in my life resolved, and I was no longer feeling bad or having Diarrhea. Regardless, I went ahead and had the the endoscopy conducted. I remained eating wheat until the endoscopy, and came back with the following results.

"Although the small bowel mucosa shows intraepithelial lymphocytosis suggestive of sprue, the villous architecture is normal and there is no expansion of the lamina propria. While the findings are possibly nonspecific, celiac disease cannot be entirely excluded. Serologic correlation is suggested, if clinically indicated."Benign small bowel mucosa showing intraepithelial lymphocytosis and otherwise normal villous architecture."

From this point, I proceeded to go on the Gluten Free diet, and have been on it for roughly about 2 months. I haven't really felt any different being on it, and prior to going on it was drinking tons of wheat beer and eating meals that I can no longer have, and not feeling bad at all. Is it possible that I was misdiagnosed, or is it more likely that I'm just a "silent celiac?" The results aren't really making sense to me now that I've been able to process everything, I would think my IGA levels would be low, and my endoscopy would have shown a lot more damage. The way it was explained to me is that it's like if I were producing a lot of insulin for diabetes 2, but not showing any damage really. This doesn't really make sense to me though, and I would love more resources as well as an opinion on if I should do additional testing/evaluations.

TLDR: Not sure if I'm silent celiac/misdiagnosed

Blood Results: IGG: 3.2, IGA: >250.0H

Endoscopy: "per Specimen Comments: Although the small bowel mucosa shows intraepithelial lymphocytosis suggestive of sprue, the villous architecture is normal and there is no expansion of the lamina propria. While the findings are possibly nonspecific, celiac disease cannot be entirely excluded. Serologic correlation is suggested, if clinically indicated. Per Specimen Diagnosis: Benign small bowel mucosa showing intraepithelial lymphocytosis and otherwise normal villous architecture. Benign gastric mucosa showing mild chronic inflammation including intraepithelial lymphocytosis (lymphocytic gastritis pattern). Alcian blue stain: Negative for intestinal metaplasia. Helicobacter pylori immunostain: Negative for Helicobacter pylori.

 

Questions that I have:

 

1. Is it possible that the IGA result was elevated due to extreme stress that I was experiencing at the time?
2. Why would my villous architecture be listed as "normal" yet I was recommended to go on the Gluten Free diet?
3. If I am celiac, why was I not experiencing any gastrointestinal, other symptoms when consuming a lot of wheat in drinks/meals before going on the diet?
4. Are there other tests I can do that would be more conclusive?

[trents]

Welcome to the forum, CuriosityKilledtheCeliac!

First of all, it does not look like there were any actual celiac antibody IGA tests that were run. The IGA 250 H score you posted looks like a "total serum IGA" rather than a celiac specific antibody test. I say that because of the sheer magnitude of the number. Are you sure you are reporting the full name of this IGA test? Total serum IGA measurement is valuable only if it is low and yours is high. If it is low, then it can skew the individual IGA tests downward and produce false negatives. The most popular celiac IGA test ordered by doctors is the tTG-IGA which combines good specificity with good sensitivity. Now it is possible that the IGA value you posted is a very high tTG-IGA but it is impossible to know for sure with the little bit of info you supplied.

The IGG test you post is a secondary celiac antibody test that is not as specific as the tTG-IGA but sometimes catches those who actually do have celiac disease but for whatever reason throw a negative on the tTG-IGA. However, you did not include a score along with the IGG test name. There is no "H" with it so I assume it was negative? The antibody test information you supplied is not very helpful. And, when you supply a score for an antibody test you should always supply along with it the values for what the normal (i.e. negative) range is for that test. There is no standard or these tests. Every lab develops their own test and their own ranges.

Here is a primer for celiac antibody blood testing:

Your endoscopy/biopsy report does not give strong evidence for celiac disease since there is no villous atrophy reported. With the little information you have supplied from the antibody testing and no villous atrophy along with no current celiac symptoms I would assume you do not have celiac disease. It would be interesting to see if symptoms develop if you were to reintroduce gluten into your life. If so, I would be looking at NCGS (Non Celiac Gluten Sensitivity) for which there is not test and it does not damage the villi as does celiac disease.

Edited July 21, 2023 by trents

[trents]

Can you post the actual report from the antibody blood tests. Is there more to it than what you posted?

And why did you start eating gluten free? Did a doctor suggest this after looking at the antibody test results and the biopsy?

Edited July 21, 2023 by trents

[CuriosityKilledtheCeliac]

19 minutes ago, trents said:

Can you post the actual report from the antibody blood tests. Is there more to it than what you posted?

And why did you start eating gluten free? Did a doctor suggest this after looking at the antibody test results and the biopsy?

Sure, the results were for the TTG test, if there's a way to post images, I can, but not seeing the ability on the forum.

• White Blood Cell count: 9.8 out of a reference range of 3.8-10.8 (normal)
• Red Blood Cell Count 5.61 out of a reference range of 4.20-5.80 (normal)
• Hematocrit 51.0 out of a reference range of 38.5-50.0 (abnormal) was told not to worry about it though
• MCV: 90.9 out of a reference range of 80-100 (normal)
• MCH 33.5 out of a reference range of 32-36 (normal)
• MCHC 33.5 out of a reference range of 27-33 (normal)
• RDW 12.6 out of a reference range of 32-36 (normal)
• RDW 12.6 out of a reference range of 11-15 (normal)
• Platelet Count 312 out of a reference range of 140-400 (normal)
• MPV 10.4 out of a reference range of 7.5-12.5 (normal)
• ABSOLUTE Neutrophils 6811 out of a reference range of 1500-7800 (normal)
• Absolute Lymphocytes 1960 out of a reference range of 850-3900 (normal)
• Absolute monocytes 833 out of a reference range of 200-950 (normal)
• Absolute eosinophils 127 out of a reference range of 15-500 (normal)
• Absolute Basophils 69 out of a reference range of 0-200 (normal)
• TTG
  • Tissue Transglutaminase AB, IGG 3.2
  • Tissue Transglutaminase AB,IGA >250, says in the note that greater than 15 means the antibody is detected

I went to the doctor to get a general checkup and had always wondered about the celiac since my mom has it, however, I have never had any gastrointestinal symptoms. At the time I was dealing with significant stress and having lots of  diarrhea, so I figured I would test for it at the time, got the TTG results and was then referred to the GI specialist. They recommended that I go on the diet given the diarrhea at the time + the TTG results, my mom having celiac. However, once the stressful situations had resolved I was no longer having diarrhea, so wondering if they just jumped the gun given my mom having it + me reporting the diarrhea at the time. I've been on the diet for about 2 months now, but I have not really felt any different since being on it

[trents]

"Tissue Transglutaminase AB,IGA >250, says in the note that greater than 15 means the antibody is detected."

Ah, with the more complete information, it all makes more sense. Your tTG-IGA was almost 17x normal. If you were in the UK and some other European countries they would have declared you to be a celiac on that alone and likely would not have ordered a biopsy. With your mom having celiac disease, depending on which study you look at, there is somewhere between a 10% and an almost 50% chance you would have or will someday develop celiac disease. So there is disparity between the antibody testing and the biospy pathology report. The antibody score screams celiac disease but the biopsy says "no".

[CuriosityKilledtheCeliac]

5 minutes ago, trents said:

"Tissue Transglutaminase AB,IGA >250, says in the note that greater than 15 means the antibody is detected."

Ah, with the more complete information, it all makes more sense. Your tTG-IGA was almost 17x normal. If you were in the UK and some other European countries they would have declared you to be a celiac on that alone and likely would not have ordered a biopsy. With your mom having celiac disease, depending on which study you look at, there is somewhere between a 10% and an almost 50% chance you would have or will someday develop celiac disease. So there is disparity between the antibody testing and the biospy pathology report. The antibody score screams celiac disease but the biopsy says "no".

Gotcha, isn't the biopsy supposed to be more indicative though of whether or not I would have it? Do you recommend I see an additional GI specialist, or get another endoscopy in the future?

[CuriosityKilledtheCeliac]

1 minute ago, CuriosityKilledtheCeliac said:

Gotcha, isn't the biopsy supposed to be more indicative though of whether or not I would have it? Do you recommend I see an additional GI specialist, or get another endoscopy in the future?

Just not understanding how the blood test result could be so high but I essentially have no damage other than slight inflammation when I was heavily consuming drinks and food with gluten up until the endoscopy.

[trents]

First, let me address your lack of symptoms. A high percentage of those diagnosed with celiac disease have few or no GI symptoms. We call them "silent celiacs". They are diagnosed based on random testing because of family history or because they have other blood parameters that are out of wack such as anemia or elevated liver enzymes or they have osteopenia/osteoporosis. I was a silent celiac myself. So, lack of GI distress is by no means evidence against having celiac disease.

Second, the lack of villous atrophy seen in the biopsy could easily be due to timing. If the biopsy was taken fairly soon after the onset of celiac disease then there had not been enough time for the villi to be damaged to an extent detectable in the biopsy. They use a rating system called the Marsh scale to evaluate villi damage. If the damage is at stage 3 or higher, then that is considered to be definitive for celiac disease. Celiac disease onset can happen at any stage of life. The fact that all your other CBC blood work is normal supports the notion that you were biopsied before there had been significant damage to the villi. The small bowel villi lining is where all of our nutrition is absorbed and so when it becomes significantly impaired we see anemia develop and bone density loss, etc. It typically takes 10 years or more from the onset of symptoms or other health irregularities to get a celiac diagnosis. In my case, it took 13 years. The first clue for me was elevated liver enzymes which persisted for years despite the fact that I don't use alcohol and was negative for all the viral hepatitis variations.

It takes both the genetic potential to develop celiac disease and some kind of triggering stress event such as a viral infection or nasty divorce or a stressful job environment. In other words, the genes establish potential for developing celiac disease but having the genes doesn't equate to having the disease. 40% of the general population have the genes but only 1% or so develop celiac disease. You mentioned a stress period in your life

Your high tTG-IGA score is the kingpin here IMO. tTG-IGA is 95% specific for celiac disease. So, the chances that your high test score was caused by something else is slim.

You can look at the evidence in either of two ways. You may consider yourself blessed to have caught it so early. Or, you can assume the biopsy is a definitive rule out of celiac disease and go back to eating gluten.

But do keep in mind that if you seek testing again at some point you will have needed to have been consuming significant amounts of gluten for two months or more.

[trents]

Negative biopsy reports can also be due to patchy damage to the small bowel lining at the time the samples were taken, especially if the onset of celiac disease was recent. We recommend taking at least four samples in both the duodenum and the duodenum bulb. Some GI docs doing the scoping will not be that thorough and so, will miss the damage which gives a negative report. So, yes, the biopsy is normally considered the gold standard of celiac disease diagnosis but there are contingencies.

To more thoroughly answer your question from above, it it was me, in view of the family history and in view of the extremely high tTG-IGA score, I would assume I did have celiac disease but, that it was caught early before detectable damage was done to the villous lining, and proceed with the gluten free lifestyle.

[Scott Adams]

I would only add that your biopsy results say: "suggestive of sprue" which means "likely celiac disease" in doctor speak. Your blood tests nail down that you likely have celiac disease, and the fact that you mother has it, to me at least, leaves no doubt that you probably also have it.

[Wheatwacked]

See how many of these other symptoms you can identify with. I had 19 symptoms that improved or disappeared on GFD. link below

Did they check your vitamin D level?  Most people with celiac disease have low D.  If you get plenty of vitamin D from sunlight, food or supplements, your 25 hydroxy D plasma around 80 ng/ml (200 nmol/L) it could be protecting your small intestine, limiting the damage.  The biopsy is the Gold Standard in that, if you have Marsh 3 damage found, you have Celiac, but not finding it does not rule it out.  Since the Marsh 3 diagnosis protocol was set much new inforfomation has been gained linking Celiac Disease to a host of other, not gastro issues and symptoms.  It wasn't until the early 1950s that it was proven that gluten was the cause of Celiac Sprue.

Quote

Literature analysis showed a potential impact of VD [vitamin D] on celiac disease [Celiac Disease] and IBDs can be reasonably assumed based on the well-documented in vitro and in vivo VD activities on the gastrointestinal tract and the immune system. The evidence that VD can preserve intestinal mucosa from chemical and immunological damage and that VD modulation of the immune system functions can contrast the mechanisms that lead to the intestinal modifications characteristic of gastrointestinal autoimmune diseases has suggested that VD could play a role in controlling both the development and the course of celiac disease and IBDs. Role of Vitamin D in Celiac Disease and Inflammatory Bowel Diseases