Friends, Below are my Endoscopy reports which i feel are not very clear to say that its celiac . Please let me know your thoughts on this. My blood work was normal on gluten containing diet.

[Sakshisehgal]

Hello Friends,

I had back pain and along with that some front abdomen discomfort and burning from past 5 months. I got tested for celiac antibodies which were negative as per doctor (ttg was 4) . Endoscopy results are not that satisfactory to say that it is celiac but doctor told to go on celiac diet. First he told to go on diet for 2 months , then extended to 4 months and then 6 months and then said long life since you have celiac. I am currently on celiac diet and do not feel much of the difference in the back pain and front pain of muscles. Please share your thoughts what could be the next step to be done as per below reports of endoscopy. Doctor doesn't seem to be very confident in his words.I am totally confused!

SURGICAL PATHOLOGY REPORT

DIAGNOSTIC RESULTS OF MICROSCOPIC EVALUATION

A . Duodenum, Second Part, Biopsy:

ACTIVE DUODENITIS
NO EVIDENCE OF PARASITES
THE DIFFERENTIAL DIAGNOSIS INCLUDES PEPTIC ULCER DISEASE, DRUG-INDUCED INJURY (E.G. NSAIDS AND OTHERS), INFECTION AND GLUTEN SENSITIVE ENTEROPATHY, AMONG OTHERS. CORRELATION WITH SEROLOGIC/MOLECULAR TESTING IS RECOMMENDED.

B . Stomach, Random, Biopsy:

CHEMICAL/REACTIVE GASTROPATHY

DIFF-QUIK STAIN IS NEGATIVE FOR H. PYLORI (88312).
PAS/ALCIAN BLUE STAIN IS NEGATIVE FOR INTESTINAL METAPLASIA (88313).

Pathology results :

Normal  esophagus 

Normal mucosa in the whole stomach 

Normal mucosa in the duodenum bulb and second part of the duodenum.The celiac serologies were negative.The mucosa in the bulb appeared to have some scalloping, but the villi were of normal length.

 

 

[trents]

47 minutes ago, Sakshisehgal said:

Hello Friends,

I had back pain and along with that some front abdomen discomfort and burning from past 5 months. I got tested for celiac antibodies which were negative as per doctor (ttg was 4) . Endoscopy results are not that satisfactory to say that it is celiac but doctor told to go on celiac diet. First he told to go on diet for 2 months , then extended to 4 months and then 6 months and then said long life since you have celiac. I am currently on celiac diet and do not feel much of the difference in the back pain and front pain of muscles. Please share your thoughts what could be the next step to be done as per below reports of endoscopy. Doctor doesn't seem to be very confident in his words.I am totally confused!

SURGICAL PATHOLOGY REPORT

DIAGNOSTIC RESULTS OF MICROSCOPIC EVALUATION

A . Duodenum, Second Part, Biopsy:

ACTIVE DUODENITIS
NO EVIDENCE OF PARASITES
THE DIFFERENTIAL DIAGNOSIS INCLUDES PEPTIC ULCER DISEASE, DRUG-INDUCED INJURY (E.G. NSAIDS AND OTHERS), INFECTION AND GLUTEN SENSITIVE ENTEROPATHY, AMONG OTHERS. CORRELATION WITH SEROLOGIC/MOLECULAR TESTING IS RECOMMENDED.

B . Stomach, Random, Biopsy:

CHEMICAL/REACTIVE GASTROPATHY

DIFF-QUIK STAIN IS NEGATIVE FOR H. PYLORI (88312).
PAS/ALCIAN BLUE STAIN IS NEGATIVE FOR INTESTINAL METAPLASIA (88313).

Pathology results :

Normal  esophagus 

Normal mucosa in the whole stomach 

Normal mucosa in the duodenum bulb and second part of the duodenum.The celiac serologies were negative.The mucosa in the bulb appeared to have some scalloping, but the villi were of normal length.

 

 

The mucosal scalloping would be of concern with regard to celiac disease but everything else in the testing does not point to it. You could be suffering from NCGS (Non Celiac Gluten Sensitivity) which gives many of the same symptoms as celiac disease but does not damage the villi. In that regard, have the symptoms improved since you started on a gluten free diet?

Edited August 20, 2021 by trents

[Sakshisehgal]

3 minutes ago, trents said:

The mucosal scalloping would be of concern with regard to celiac disease but everything else does not point to it. You could be suffering from NCGS (Non Celiac Gluten Sensitivity) which gives many of the same symptoms as celiac disease but does not damage the villi.

Hey i was also on NSAIDS for my back pain for about 6 months but i am not sure what is causing the scalloping. Right now my doctor says celiac but i am not satisfied as his initial attitude did not point this out. Suddenly after 6 months he is saying you have celiac. Little confused. I think your point is right and should be getting a second opinion , but do you think or should i go for a blood work again ?

[trents]

Prolonged use of NSAIDs can damage the villi in a similar way to Celiac disease.

For any celiac disease testing to be valid, you need to have been eating normal amounts of gluten up to the time of testing, both for the serum antibody tests and the biopsy. Going gluten free before testing will likely invalidate the test results. For the serum antibody test to be valid you need to be daily consuming an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks and for the biopsy consuming that amount of gluten for at least two weeks before.

So you have a decision to make. You can go gluten free now and see if your symptoms improve. If they do, you may conclude you have either celiac disease or NCGS. If you opt to be retested you will need to keep eating gluten for a couple of months. If and when you go gluten free and your symptoms do not improve then your health issues are not related to gluten.

[Sakshisehgal]

11 minutes ago, trents said:

Prolonged use of NSAIDs can damage the villi in a similar way to Celiac disease.

For any celiac disease testing to be valid, you need to have been eating normal amounts of gluten up to the time of testing, both for the serum antibody tests and the biopsy. Going gluten free before testing will likely invalidate the test results. For the serum antibody test to be valid you need to be daily consuming an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks and for the biopsy consuming that amount of gluten for at least two weeks before.

So you have a decision to make. You can go gluten free now and see if your symptoms improve. If they do, you may conclude you have either celiac disease or NCGS. If you opt to be retested you will need to keep eating gluten for a couple of months. If and when you go gluten free and your symptoms do not improve then your health issues are not related to gluten.

I am already on Gluten free diet and the pain does not seem to be getting off. This is the reason i am getting confused if i should go for the test again.

Just now, Sakshisehgal said:

I am already on Gluten free diet and the pain does not seem to be getting off. This is the reason i am getting confused if i should go for the test again.

Any specific doctor with whom i can consult and get this clear out? Any suggestions would help.

[trents]

If you have been on a gluten free diet for a matter of weeks or months and not feeling better and since your tests for celiac disease are negative, then I would go a different direction in your medical exploration. One possibility is that you have other food intolerances that have nothing to do with gluten. And the back pain does not fit with celiac symptomology. Is the pain in your back low, mid or high back area? Have you had a lower GI scope yet to check for problems in the large bowel?

[Sakshisehgal]

4 minutes ago, trents said:

If you have been on a gluten free diet for a matter of weeks or months and not feeling better and since your tests for celiac disease are negative, then I would go a different direction in your medical exploration. One possibility is that you have other food intolerances that have nothing to do with gluten. And the back pain does not fit with celiac symptomology. Is the pain in your back low, mid or high back area? Have you had a lower GI scope yet to check for problems in the large bowel?

Major Pain is in lumbar spine area which radiates towards the sides and front abdomen area also giving some pain and burning sensation all in the muscles of abdomen. I was having cervical disc herniation for which i took NSAID's and then that seems to be better with pain but now it is lumbar spine and front and mostly on sides. Got MRI done of the lumbar and it said i have some bulging in the disc but the doctor says it can give pain at back not in the front. So only i checked with GI doctor and recently also has CT scan of pelvic and abdomen got done which came back normal . During all this , they checked for my auto immune and blood panel in which everything came normal but only celiac panel ttg was 4 (which i think is on boundary for some labs)so they did endoscopy for which i shared the result here. Nothing seems to be working and pain improves when i take NSAID's but comes back as soon as i stop them  , however gluten free diet is not helping much and its been over 3 months. All my vitals came ok ,only vitamin d was little low. Not sure why the pain and burning is there is the abdomen . Neuroscience doctor says the abdomen pain is not in her scope and GI says this is not something related to GI . Really do not understand how to go forward! GI already said after 6 months of endoscopy over email that it is celiac and go on gluten free diet.

[trents]

7 minutes ago, Sakshisehgal said:

Major Pain is in lumbar spine area which radiates towards the sides and front abdomen area also giving some pain and burning sensation all in the muscles of abdomen. I was having cervical disc herniation for which i took NSAID's and then that seems to be better with pain but now it is lumbar spine and front and mostly on sides. Got MRI done of the lumbar and it said i have some bulging in the disc but the doctor says it can give pain at back not in the front. So only i checked with GI doctor and recently also has CT scan of pelvic and abdomen got done which came back normal . During all this , they checked for my auto immune and blood panel in which everything came normal but only celiac panel ttg was 4 (which i think is on boundary for some labs)so they did endoscopy for which i shared the result here. Nothing seems to be working and pain improves when i take NSAID's but comes back as soon as i stop them  , however gluten free diet is not helping much and its been over 3 months. All my vitals came ok ,only vitamin d was little low. Not sure why the pain and burning is there is the abdomen . Neuroscience doctor says the abdomen pain is not in her scope and GI says this is not something related to GI . Really do not understand how to go forward! GI already said after 6 months of endoscopy over email that it is celiac and go on gluten free diet.

Well, I am not inclined to agree with the the GI doc's conclusion that you have celiac disease. I am not sure how he reached that conclusion, based on the testing evidence and the fact that you are not doing better on a gluten free diet does not support his diagnosis. 

Could you have a problem in the thoracic spine area which innervates the organs, viscera and muscles of the abdomen? https://courses.lumenlearning.com/boundless-ap/chapter/spinal-nerves/

[Sakshisehgal]

1 hour ago, trents said:

Well, I am not inclined to agree with the the GI doc's conclusion that you have celiac disease. I am not sure how he reached that conclusion, based on the testing evidence and the fact that you are not doing better on a gluten free diet does not support his diagnosis. 

Could you have a problem in the thoracic spine area which innervates the organs, viscera and muscles of the abdomen? https://courses.lumenlearning.com/boundless-ap/chapter/spinal-nerves/

Then i think going back or consulting a new neuroscience doc should be my next step . Thanks a lot for the fruitful information and i think i should get in touch with a good spine specialist to see whats running .I am glad that your suggestion definitely helped me. 

[Wheatwacked]

3 hours ago, Sakshisehgal said:

CHEMICAL/REACTIVE GASTROPATHY

How long after starting the Nsaid did the stomach problem start? Are you still taking it? Any other "unrelated" symptoms like sinus congestion, arthitis, sleep apnea, dermititus, diahrea, etc. that did improve with GFD. When my back would go out (father, son and brother have it too) once a decade the best of all the various treatments for me was 800 mg Ibuprophin 3 times a day for two weeks. It sounds like you back pain, long term, that is not being healed and the the nsaid is tearing up your stomach. Ask the new doctor about prednisone instead of the nsaid. Nsaids only block the pain signals, prednisone turns them off and promotes healing. According to Dr Gundry gluten is a lectin so GFD is a healthy choice; but in your case does not seem to be the issue at all.

[trents]

That seems like a wise course of action and I'm glad I could help.

A couple of years ago I was having pain in my scapula. It turned out to be a "referred" pain from some nerve irritation in my C spine. The "facets" in my neck were rubbing on the nerves that run from the upper spinal cord to the shoulder blade area. And by the way, the relief you experience from NSAIDs fits very well with the possibility of it being a spinal/nerve issue. I'm not a physician but at 70 years of age I've accumulated some medical knowledge in having to deal with various health issues of my own over the years.

[Sakshisehgal]

2 hours ago, trents said:

That seems like a wise course of action and I'm glad I could help.

A couple of years ago I was having pain in my scapula. It turned out to be a "referred" pain from some nerve irritation in my C spine. The "facets" in my neck were rubbing on the nerves that run from the upper spinal cord to the shoulder blade area. And by the way, the relief you experience from NSAIDs fits very well with the possibility of it being a spinal/nerve issue. I'm not a physician but at 70 years of age I've accumulated some medical knowledge in having to deal with various health issues of my own over the years.

Great to know  ! Hope i figure out soon with this.

[Sakshisehgal]

2 hours ago, Wheatwacked said:

How long after starting the Nsaid did the stomach problem start? Are you still taking it? Any other "unrelated" symptoms like sinus congestion, arthitis, sleep apnea, dermititus, diahrea, etc. that did improve with GFD. When my back would go out (father, son and brother have it too) once a decade the best of all the various treatments for me was 800 mg Ibuprophin 3 times a day for two weeks. It sounds like you back pain, long term, that is not being healed and the the nsaid is tearing up your stomach. Ask the new doctor about prednisone instead of the nsaid. Nsaids only block the pain signals, prednisone turns them off and promotes healing. According to Dr Gundry gluten is a lectin so GFD is a healthy choice; but in your case does not seem to be the issue at all.

I took Duloxetine 20mg for 6 months for cervical pain and after that i felt like the back pain and abdomen pain kicked up somwehere.My pain of back and abdomen and burning have not improved even on gluten-free diet for past 3 months.But i am still not sure if this is back pain causing everything or it is all celiac.

[Wheatwacked]

On 8/20/2021 at 2:11 PM, Sakshisehgal said:

only vitamin d was little low

How low is "a little low"? Did any doctor suggest vitamin supplementation?

Quote

The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years)   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective (mayoclinicproceedings.org)   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf 

 

On 8/20/2021 at 1:57 PM, trents said:

And the back pain does not fit with celiac symptomology.

It can be a symptom of vitamin deficiency as a result of Celiac disease.

 After all Celiac Disease is a disease of malabsorption; and the Standard American Diet is a diet deficient of numerous vitamins and minerals. Below is the list of vitamins I take everyday. You might try adding them one at a time. I usually can tell the effects by the fourth day, but my PCP said I'm not like other people, so give it two weeks.

Quote

patients with chronic pain (lasting from 6 months to 1 year) in the neck and back regions that improved significantly through the correction of the vitamin D deficiency or insufficiency.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730953/

Calcium: 1000; D3: 250 mcg; B12; B complex; Selenium 200; Dhea: 100; Manganese: 50; Phospatidyl Choline 840; Iron: 28; Lithium: 5; vitamin C 😄 1000; B5 Pantothenic Acid: 1000; vitamin K from >10 gm parsley; Cod Liver Oil: 15 mg (vit A); Almond: 58g two ounces) = 15 mg vit E

[kagey]

Yeah, that's my problem too.  At the time of my upper endoscopy, I was having very little wheat.  Maybe one low-carb tortilla or two per week, no bread, no pasta of any sort, and STILL they diagnosed celiac based on "smooth spots" and mild villi damage (but no really bad stuff).  Negative antibodies, one of the several genetic markers (but what does that mean, anything?), do not feel unwell if I DO eat bread but I am doing my best to stay gluten free.

I had the antibodies tested more than once, and at least once on a high gluten diet (bread every day), and they were always negative.

I feel better on a gluten free diet BUT I do not feel well if I have a lot of grain gluten-free (as opposed to almond flour or cauliflower mostly) products.

I definitely have malabsorption as I have to take magnesium and iron (though now I get infusions).  Anyway, not to thread hijacks, but I ask the same question as the OP - how can they be REALLY sure?  And I do take Vitamin D daily, Vitamin B12 I do not take because if I take even a multivitamin, the amount of Vitamin B12 in it gives me an overload).

And on Vitamin D toxicity - my children and I have had low Vitamin D occasionally, and my son got 50,000 IU Vitamin D capsules, one per week for five weeks I believe.  So yeah, I'm not sure if it is a thing.

I really don't know where to begin with going down the path of "maybe I have a different food allergy" other than I seem to be sensitive to soy protein but not soy lecithin.  I am interested in the spinal nerve path because I have many degenerated discs (lower back surgery a while ago and the rest of the discs kind of went too - both cervical and thoracic are damaged).  I do not want cortisone shots and I am trying to lose weight to give my back and everything else a break.  Losing weight will be anti-inflammatory, as my weight management doctor says...

[trents]

How can you you have an overload of B12? It is a water soluble vitamin and any excess will be peed out.

[Wheatwacked]

Quote

Vitamin D inhibits NF-κB signaling pathways, reduces the level of inflammation and oxidative stress in the intervertebral disc, delays cell aging, and inhibits apoptosis. Therefore, vitamin D can greatly improve intervertebral disc degeneration.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6511806/

The problem is that on a Gluten Free Diet, you are still not adressing the nutritional deficiencies inherent in our diet. Eating gluten free you are eliminating the toxin that causes malapsorbtion, but not refilling. Consider a leaky coffee cup. You fix the leak but the cup is still half empty until you refill it. Until you replenish your low levels you will still have most of the same symptoms.

 

On 8/20/2021 at 12:27 PM, Sakshisehgal said:

I am currently on celiac diet and do not feel much of the difference in the back pain and front pain of muscles. Please share your thoughts what could be the next step to be done as per below reports of endoscopy. Doctor doesn't seem to be very confident in his words.I am totally confused!

Basically the doctor excluded most of the causes of your gastrophy and duodenitis. H. pylori infection will show features of both acute and chronic gastritis and that has been excluded in your biopsy, along with other infections. Leaving an autoimune cause. You indications of Celiac Disease are borderline, but consider yourself lucky to have been diagnosed so quickly. Most people take six to twelve years of misdiagnosis.

Quote

Symptoms are related to hematologic, neurologic, and/or gastrointestinal disturbances resulting from B12 deficiency. These symptoms can include fatigue, dizziness, anorexia, weight loss, sore tongue, confusion, memory loss, irritability, paresthesias, numbness, weakness, and ataxia. Patients with autoimmune gastritis often suffer from other endocrine-related autoimmune disorders. Autoimmune gastritis is rarely erosive...The diagnostic approach should include endoscopic evaluation with biopsies, blood work to demonstrate autoimmune antibodies, hematologic studies, and blood work to evaluate for B12 and iron deficiency. Treatment centers on replacement of essential vitamins and minerals to avoid downstream effects of vitamin and mineral deficiencies. 

abdominal_pain_gastritis.ashx (facs.org)  https://www.facs.org/-/media/files/education/core-curriculum/abdominal_pain_gastritis.ashx#:~:text=Abdominal Pain - Gastritis%2FDuodenitis and Gastropathy,-American College of&text=Cytomegalovirus (CMV) is the most,endoscopic biopsies showing viral inclusions.

  Here is a link the the spreadsheet I've been keeping for a while. The totals explain why I take the suplements I do but they are not included. I hope it may help you.  http://doodlesnotes.net/index3.html

[knitty kitty]

16 hours ago, trents said:

How can you you have an overload of B12? It is a water soluble vitamin and any excess will be peed out.

B12 is capable of being stored in the liver for months to years.  When a person is deficient in B12, they are restoring the B12 in the liver as well as what is needed for every day.  Like filling up that coffee cup @Wheatwacked said.

Testing for vitamin B12 level should be done two to three weeks after stopping supplementation, otherwise B12 levels will come back high.  The B12 level will be high due to the supplementing.  

To help anemia, you need more than just iron and B12.  B12 needs the other seven B vitamins.  You need folate (B9), riboflavin (B2), and pyridoxine (B6).  And those B vitamins need the other B vitamins to work properly.  They all work together.  Copper and zinc are also needed.

Pyridoxine (B6) is essential to nerve health.  

Thiamine (B1) helps turn fats, protein, and carbohydrates into energy.  Taking thiamine can help you lose weight.  

You may want to consider taking smaller doses of Vitamin D every day, rather than one large dose once a week.  This will allow for better absorption.  

B12 Information....

https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/

Hope this helps.

 

[kagey]

16 hours ago, trents said:

How can you you have an overload of B12? It is a water soluble vitamin and any excess will be peed out.

That's a great question:  the blood levels are consistently higher than the upper limit of "normal".  No idea why that would or could be.

[knitty kitty]

It's because you are still supplementing when the blood tests are done.  

You have to quit supplementing two to three weeks before getting B12 levels tested.  Otherwise you'll be measuring the B12 supplements in your system.

[Wheatwacked]

2 hours ago, knitty kitty said:

you need more than just iron and B12.

B5, Pantothenic Acid is overlooked and not in many B complex formulations in a useful amount. It is the precurser to CoA, an essential part of the Krebbs Cycle, the creation of energy in all living cells.  If folate is insufficient, B5 steps in to reduce homocystein levels.

Quote

Because of pantothenic acid’s role in triglyceride synthesis and lipoprotein metabolism, experts have hypothesized that pantothenic acid supplementation might reduce lipid levels in patients with hyperlipidemia...a deficiency is associated with numbness and burning of the hands and feet, headache, fatigue, irritability, restlessness, disturbed sleep, and gastrointestinal disturbances with anorexia..there are no reports of pantothenic acid toxicity in humans at high intakes.    https://ods.od.nih.gov/factsheets/PantothenicAcid-HealthProfessional/

 

[trents]

3 hours ago, knitty kitty said:

B12 is capable of being stored in the liver for months to years.  When a person is deficient in B12, they are restoring the B12 in the liver as well as what is needed for every day.  Like filling up that coffee cup @Wheatwacked said.

Testing for vitamin B12 level should be done two to three weeks after stopping supplementation, otherwise B12 levels will come back high.  The B12 level will be high due to the supplementing.  

To help anemia, you need more than just iron and B12.  B12 needs the other seven B vitamins.  You need folate (B9), riboflavin (B2), and pyridoxine (B6).  And those B vitamins need the other B vitamins to work properly.  They all work together.  Copper and zinc are also needed.

Pyridoxine (B6) is essential to nerve health.  

Thiamine (B1) helps turn fats, protein, and carbohydrates into energy.  Taking thiamine can help you lose weight.  

You may want to consider taking smaller doses of Vitamin D every day, rather than one large dose once a week.  This will allow for better absorption.  

B12 Information....

https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/

Hope this helps.

 

But just because it is stored in the liver, does that mean you can get an overload?

[kagey]

It took more than a year to get the B12 level down to normal.  But the doctors keep telling me to take it, then it goes high again (even from only a multi-vitamin, not separate B12) and I stop it again.

Iron is the opposite.  I might make a thread about iron, mine is weird (which does seem to go with celiac I am told).

[trents]

But when your B12 is high, is it hurting anything?

[knitty kitty]

No, high B12 does not hurt anything.

"Signs and Symptoms of High B12 That You Should Tell Your Doctor"

https://www.livestrong.com/article/374162-signs-symptoms-of-high-b12/

And...

"Can you take too much vitamin B12? How to find your proper dosage, according to dietitians"

https://www.insider.com/vitamin-b12-overdose