EGD results

[GfreeOH]

Hello!

 

Backstory, I have been fighting with chronic abdominal pain for YEARS. I was told the pain was “IBS”. I was referred to a Gastroenterologist office in my town and had bloodwork done, as well as Genetic testing through Mayo Clinic. My TTG-IGA and TTG IGG were negative, but, the Celiac Gene pairs were present. It said DQ Alpha 1 05:01, 05 and DQ Beta 1 02:01, 02:01 equivalent 2,2. My vitamin D is 11, and Ferritin 16. Those are just a few of the low markers on lab results. The Gastroenterologist stated we would go with NCGS until I had an EGD.

The physician who completed my EGD wrote NCGS as the preoperative indication for the scope.  I had the EGD Monday of last week and results posted to the portal. I am awaiting a call from the Gastro to go over these results, but, aside from the HPylori that was found, do the duodenum findings look like NCGS or Celiac? 

EGD results:

Procedure: EGD
Pre-operative diagnosis: Non-celiac gluten sensitivity
Specimen Source
A Gastric biopsy
B Duodenal biopsy
Gross Description
Pathology Reports
 Part A: Received in formalin labeled 'gastric biopsy' are two pieces of light tan tissue measuring 0.3 and 0.4 cm in greatest dimension. The specimen is entirely submitted in cassette A1.
Part B: Received in formalin labeled 'duodenal biopsy' are multiple pieces of light tan tissue measuring 0.1 to 0.2 cm in greatest dimension. The specimen is entirely submitted in cassette B1.
Microscopic Description
Part A: Sections show pieces of gastric mucosa which include both antral and oxyntic types are reviewed on initial H&E stained sections. There is prominent chronic gastritis with numerous plasma cells and some lymphocytes in the lamina propria. Additionally, there is focal active inflammation which neutrophils which extend into gastric glands. The inflammation is most prominent in the antral mucosa. A Helicobacter immunostain shows numerous organisms. Control sections stain appropriately. There is no granuloma, intestinal metaplasia, or evidence of malignancy.
Part B: Sections show pieces of duodenal mucosa. These show some areas with villous flattening, and the lamina propria shows increased plasma cells as well as some eosinophils and foci of neutrophils. Intraepithelial lymphocytes are not prominently increased. No specific organisms are identified. No granuloma or adenomatous change are seen.
Diagnosis
Part A: Stomach, biopsy:
Moderate chronic, focally active gastritis.
Diagnosis
Helicobacter immunostain positive for organisms.
Part B: Duodenum, biopsy:
Mild chronic, focally active duodenitis, nonspecific. Please read comment.
Comment: The duodenal findings suggest the possibility of celiac disease. However, the provided clinical impression of non-celiac gluten sensitivity is noted. If not already performed, clinical serology testing for celiac disease may be helpful.

 

Thanks for taking the time to look at my results:) My appointment for Gastroenterologist follow-up post scope is not until 2/22:(

 

[trents]

Welcome to the forum, GfreeOH!

"Sections show pieces of duodenal mucosa. These show some areas with villous flattening." This indicates possible celiac disease, as the report noted. The "flattening" is patchy, however, which is not unusual with celiac disease. There are a few other medical conditions besides celiac disease that can cause damage to the villi as well as some meds and even some foods (the protein, casein, in milk). It's too bad they only ran those two blood antibody tests. There are more that could have been run for celiac disease. What one misses, another test may catch.

Some gluten disorder experts feel that NCGS can be a precursor to celiac disease. At any rate, many of the symptoms are the same and the antidote is the same, namely, total abstinence from gluten for life.

Edited January 21, 2023 by trents

[GfreeOH]

Thank you, Trents!

I have been dairy-free and nut-free for years due to allergies, and, I do not take any prescribed or over the counter meds regularly. My main symptoms are the right-sided abdominal pain and severe bloated abdomen. I also have quite a bit of tiredness likely from the low vitamin levels or low iron.  I have had full bloodwork, and follow-up with my primary physician and OB. They even recommended a diagnostic lap for the abdominal pain which I had performed in May 2022. All lab work and pathology reports from that diagnostic lap were clear. Colonoscopy was clear. This is the only report that has shown a possible clue into what my issue may be, and I believe it’s because they finally took more than one biopsy sample. In the past (2018), my scope only had one small duodenal biopsy taken so I just don’t know how accurate that was if celiac is truly patchy as far as damage to the Duodenum. 
 

I went gluten free today in hopes of clearing the abdominal pain, but I wonder if I should continue to eat it until my 2/22 follow-up. My Gastro wouldn’t order any further bloodwork besides the ttg that was done January 2022  until I agreed to this second EGD. Maybe now that I’ve had it done, they will run the “full panel”. I wouldn’t want to mess that bloodwork up. I know even if it’s NCGS I can go gluten free for life, but, I would like to know if I need to worry about my kiddos and their possibility for Celiac down the road  I have an 8 year old who is super thin, pale, and 39 lbs (just like I was as a kid), so that is another motivating factor for “confirmation” between the two.

I look forward to reading through the site and forums to gain more knowledge on the topic:)

 

 

[trents]

Here is a primer for getting a handle on what a "full panel is": https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

One thing that should always be checked is total IGA. If that is low, it skews the other IGA test downward. I would also ask for an EMA. Please realize that if you start a gluten-free diet before all testing is done, you will likely invalidate the results. If you go gluten-free now and want further testing later, you would need to go back to eating regular amounts of gluten (the equivalent of two slices of wheat bread daily) for 6-8 weeks prior to antibody testing.

There is also the option of a third party home test kit for celiac disease. Imaware is the company that comes to mind. The kit is about $100 USD. And have you considered genetic testing to establish the potential for celiac disease? If you have celiac disease, two recent large studies say that there is almost a 50% chance that your first degree relatives have or will develop celiac disease.

Edited January 22, 2023 by trents

[GfreeOH]

This is so helpful, thank-you! I will continue the gluten challenge until I hear from the doctors otherwise in-case further bloodwork will be needed. 
 

Have a great evening!  

 

[Wheatwacked]

The way  I read that report is the guy that did the endo believes it is Celiac Disease, but doesn't want to step on the prescriber's toes. Your bloodwork also classic Celiac.  Most of the other symptoms are often found to improve with GFD and vitamin therapy. There are upwards of 200 symptoms that can be caused by malnutrion as a result of Celiac Disease. In addition Sometimes getting the right diagnosis is serendipitis. Whether Celiac or NCGS doesn't much matter in the long run. They both require abstenance from wheat, barley, rye and replenishment of vitamins. There are around 40 that may be affected. Leaders are B1, Choline and D.

You absolutely must increase your vitamin D. I take 10,000 IU a day and it took years to get my blood level up to 80 ng/ml, the homeostatic level. If I stop taking it my level drops rapidly so the doctors says continue. It affects mood, autoimmune diseases including Celiac and more.  The blood tests are accurate so its easy to track. They have given 1,250,000 IU doses to kidney transplant patients will no ill effects. but they were happier. Israeli lifeguards, in August, have blood levels of 70 -90 ng/ml, with no ill effects.

The role of vitamin D in autoimmune diseases: could sex make the difference?  ". ..On the other hand, vitamin D has been shown to downregulate in immune cells the expression of aromatase, which converts testosterone to estrogen, leading to a decrease in estrogen level"

 

[Wheatwacked]

GFD saved my life. Vitamin D may it worth living.

[GfreeOH]

1 hour ago, trents said:

Here is a primer for getting a handle on what a "full panel is": https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

One thing that should always be checked is total IGA. If that is low, it skews the other IGA test downward. I would also ask for an EMA. Please realize that if you start a gluten-free diet before all testing is done, you will likely invalidate the results. If you go gluten-free now and want further testing later, you would need to go back to eating regular amounts of gluten (the equivalent of two slices of wheat bread daily) for 6-8 weeks prior to antibody testing.

There is also the option of a third party home test kit for celiac disease. Imaware is the company that comes to mind. The kit is about $100 USD. And have you considered genetic testing to establish the potential for celiac disease? If you have celiac disease, two recent large studies say that there is almost a 50% chance that your first degree relatives have or will develop celiac disease.

Sorry Trent, I’m just seeing the bottom half of your response  mentioning the celiac home test kit. If the Gastro won’t order the full panel, I can absolutely look into this. Thanks! Also, I had the genetic test through Mayo Clinic already:) The Gastro did order that at least:) that is what prompted them doing the EGD. I have the “celiac gene pairs”, and I believe I’m HLA DQ 2.5, but, I wrote the actual Mayo Clinic verbiage from what I could decipher from my lab results in my original post I think. Gastro just said I had celiac gene pairs, needed and EGD, and they’d mark me as ncgs until scope was done. Now that it’s done, maybe the gene testing plus scope is enough.thanks again!

[GfreeOH]

23 minutes ago, Wheatwacked said:

GFD saved my life. Vitamin D may it worth living.

I’m so glad it helped you!! My mood is definitely affected at times and I do find myself to get tired easily. I have lots of joint pains as well but I told myself it was due to me getting older. Lol. I’ll absolutely start the supplementation here soon. There is just so much to work on and research right now it seems! Thank you for taking the time to send a response to my post, and the thorough response above as well. It means the world to hear others experience with this:)

[GfreeOH]

31 minutes ago, Wheatwacked said:

The way  I read that report is the guy that did the endo believes it is Celiac Disease, but doesn't want to step on the prescriber's toes. Your bloodwork also classic Celiac.  Most of the other symptoms are often found to improve with GFD and vitamin therapy. There are upwards of 200 symptoms that can be caused by malnutrion as a result of Celiac Disease. In addition Sometimes getting the right diagnosis is serendipitis. Whether Celiac or NCGS doesn't much matter in the long run. They both require abstenance from wheat, barley, rye and replenishment of vitamins. There are around 40 that may be affected. Leaders are B1, Choline and D.

You absolutely must increase your vitamin D. I take 10,000 IU a day and it took years to get my blood level up to 80 ng/ml, the homeostatic level. If I stop taking it my level drops rapidly so the doctors says continue. It affects mood, autoimmune diseases including Celiac and more.  The blood tests are accurate so its easy to track. They have given 1,250,000 IU doses to kidney transplant patients will no ill effects. but they were happier. Israeli lifeguards, in August, have blood levels of 70 -90 ng/ml, with no ill effects.

The role of vitamin D in autoimmune diseases: could sex make the difference?  ". ..On the other hand, vitamin D has been shown to downregulate in immune cells the expression of aromatase, which converts testosterone to estrogen, leading to a decrease in estrogen level"

 

Thanks again wheatwhacked! I may see if I can get them to run a vitamin panel as well as I only know the D-25 result as that was ran as a general wellness lab by my pcp:)

I think I have many of the celiac/malnourishment symptoms, but again it’s just so hard to say as they seem to be symptoms of other ailments as well. I am only 5 feet tall (short stature), had rapid weight loss of 10-15 lbs, anemia, had a stillborn baby (full-term), have low dental enamel. Etc. 

[Wheatwacked]

Here is a starter list of symptoms of Celiac from an article on Celiac.com.

https://www.celiac.com/celiac-disease/what-are-the-symptoms-of-celiac-disease-r1090/page/12/#comment-22626

Abdominal cramps, gas and bloating

Acne

Anemia

Ataxia (gluten ataxia)

Borborygmi—stomach rumbling

Coetaneous bleeding

Delayed puberty

Dental enamel defects

Diarrhea

Dry skin

Easy bruising

Epistaxis—nose bleeds

Eczema

Failure to thrive or short stature

Fatigue or general weakness

Flatulence

Fluid retention

Folic acid deficiency

Foul-smelling yellow or grayish stools that are often fatty or oily

Gastrointestinal symptoms

Gastrointestinal hemorrhage

General malaise, feeling unwell

Hematuria—red urine

Hypocalcaemia/hypomagnesaemia

Infertility, or recurrent miscarriage

Iron deficiency anemia

Joint Pain

Lymphocytic gastritis

Malabsorption

Malnutrition

Muscle weakness

Muscle wasting

Nausea

Obesity/Overweight

Osteoporosis

Pallor—pale, unhealthy appearance

Panic Attacks

Peripheral neuropathy

Psychiatric disorders such as anxiety and depression

Skin Problems—acne, eczema, DH, dry skin 

Stunted growth in children

Underweight

Vertigo

Vitamin A deficiency

Vitamin B6 deficiency

Vitamin B12 deficiency

Vitamin D deficiency

Vitamin K deficiency

Vomiting

Voracious appetite

Weight loss

Zinc deficiency