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SarahBee

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SarahBee Newbie

Hello, so I’ve been seeing a hematologist for persistent anemia for about a year now and he tested me for celiac disease and it came back positive. However, I received and endoscopy about 4 years ago for and was diagnosed with GERD and IBS, but was negative for sprue. I was given the endoscopy because I had chronic diarrhea and severe acid reflux from 2014-2018 during a very stressful time in my life and my symptoms largely resolved by reducing stress and getting on and SSRI. I have no idea if they did the celiac disease blood panel at that time. I did do one of those mail-in allergy tests and it came back positive for a potential gluten and wheat allergy but I’ve never thought that I felt bad immediately after eating gluten so I never quit because I love carbs. I still have some GERD issues depending on what I eat but am now having issues with constipation these days. I have always had a heavy menstrual cycle that has improved over the years and have always been borderline anemic from it but didn’t start having anemia symptoms until about a year ago. My HGB was always 11-12 and it got down to 9 when I started to feel ill (cold, tired, hair loss, general feeling of unwellness) and sought a hematologist. My iron is very low and and so is my RBC and WBC. I did iron infusions that fixed the problem for about a year and now I’m back to where I was. My other vitamins and minerals and folate are all normal. These were my celiac disease test results:

Deamidated Gliadin Abs, IgA: 16 (normal range: 1-19)

Deamidated Gliadin Abs, IgG: 56 (normal: 1-19)

tTG IgA: 11 (normal: 0-3)

tTG IgG: 12 (normal: 0-5)

Endomysial Antibody IgA: negative 

IgA: 278 (normal: 87-352)

Is celiac possible in my case? Is there anything else that could be wrong that would produce these results? Should I seek another endoscopy, or is it enough to see if a gluten-free diet puts these numbers back in the normal range? Thanks for reading this whole thing! 

 

 


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Russ H Community Regular
1 hour ago, SarahBee said:

Hello, so I’ve been seeing a hematologist for persistent anemia for about a year now and he tested me for celiac disease and it came back positive. However, I received and endoscopy about 4 years ago for and was diagnosed with GERD and IBS, but was negative for sprue. I was given the endoscopy because I had chronic diarrhea and severe acid reflux from 2014-2018 during a very stressful time in my life and my symptoms largely resolved by reducing stress and getting on and SSRI. I have no idea if they did the celiac disease blood panel at that time. I did do one of those mail-in allergy tests and it came back positive for a potential gluten and wheat allergy but I’ve never thought that I felt bad immediately after eating gluten so I never quit because I love carbs. I still have some GERD issues depending on what I eat but am now having issues with constipation these days. I have always had a heavy menstrual cycle that has improved over the years and have always been borderline anemic from it but didn’t start having anemia symptoms until about a year ago. My HGB was always 11-12 and it got down to 9 when I started to feel ill (cold, tired, hair loss, general feeling of unwellness) and sought a hematologist. My iron is very low and and so is my RBC and WBC. I did iron infusions that fixed the problem for about a year and now I’m back to where I was. My other vitamins and minerals and folate are all normal. These were my celiac disease test results:

Deamidated Gliadin Abs, IgA: 16 (normal range: 1-19)

Deamidated Gliadin Abs, IgG: 56 (normal: 1-19)

tTG IgA: 11 (normal: 0-3)

tTG IgG: 12 (normal: 0-5)

Endomysial Antibody IgA: negative 

IgA: 278 (normal: 87-352)

Is celiac possible in my case? Is there anything else that could be wrong that would produce these results? Should I seek another endoscopy, or is it enough to see if a gluten-free diet puts these numbers back in the normal range? Thanks for reading this whole thing! 

 

 

Hello SarahBee,

It is possible to have slightly raised tTG antibodies with Crohn's disease and type 1 diabetes. However, The deamidated gliadin antibody tests are very specific for coeliac disease. It is quite possible to have negative endomysial antibodies in the blood serum with coeliac diease. I take it the haematologist referred you for the antibody tests? Have you discussed the results with them? In the UK, you would be referred to a gastrointestinal specialist for further investigation.

trents Grand Master

Unless the gastro doc doing the biopsies took several samples from both the duodenum and the duodenum bulb, damage to the villi could have been missed. We get reports on the forum all the  time of biopsies that were less than thorough in this sense. Frankly, even many GI docs are not that knowledgeable about celiac disease. But your labs and your symptoms strongly point to celiac disease.

Scott Adams Grand Master

These three specific tests are strongly positive, so it looks like you may have celiac disease:

  • Deamidated Gliadin Abs, IgG: 56 (normal: 1-19)
  • tTG IgA: 11 (normal: 0-3)
  • tTG IgG: 12 (normal: 0-5)

Your doctor may want to schedule an endoscopy to confirm the diagnosis, so you would need to keep eating gluten until that test is done, but ask your doctor if they plan to do that test.

Wheatwacked Veteran
Quote

Elevated serum methylmalonic acid and homocysteine levels are found in patients with pernicious anemia. They probably are the most reliable test for cobalamin deficiency [B12] in patients who do not have a congenital metabolism disorder  differentiate folic acid deficiency from pernicious anemia?

Elevated concentrations of homocysteine in blood may be an independent risk factor for the development of atherosclerosis. Elevated homocysteine concentrations can be caused by decreased methylation of homocysteine to form methionine, as occurs in folate deficiency. A parallel pathway exists for methylation of homocysteine, in which choline, by way of betaine, is the methyl donor. Choline deficiency in mice and humans is associated with increased plasma homocysteine

The Connection Between Anemia and Celiac Disease: What We Know

Normally, vitamin B12, vitamin B6, and folic acid and choline break down homocysteine. There should be very little homocysteine left in the bloodstream. If you have high levels of homocysteine in your blood, it may be a sign of a vitamin deficiency, heart disease, or a rare inherited disorder. In my case supplementing choline brought my mine down to normal.

Pernicious Anemia (also called Anemia of chronic disease) happens when you have an autoimmune disease or other illness lasts longer than three months and that causes inflammation. 

per·ni·cious   adjective, having a harmful effect, especially in a gradual or subtle way. "the pernicious influences of the mass media"

Your blood tests indicate Celiac Disease so dealing with that (Gluten Free Diet and increase deficient vitamin and minerals) may solve your symptoms. An endoscopy while eating gluten will give you a baseline for damage

It often takes 10 years for the doctors to get over the cultural denial that wheat gluten is a problem so they call it pernicious because the cause is unknown to them. My aunt died of pernicious anemia in 1985. Celiac Disease was never considered even though my son was diagnosed as an infant in 1976. Meantime more damage is done through inappropriate treatments. Celiac Disease causes malabsorption of nutrients even if you are eating the best diet choices. Malabsorption can cause high calorie malnutriton and the specific sypmtoms will vary with your own genetics and dificiencies. 

Vitamin D is low in almost every autoimmune disease and higher levels help mitigate the autoimmune response. Low potassium and choline jntake are common in the western diet, blood tests do not reflect deficiencies and rarely tested for.

 

 

trents Grand Master
(edited)
1 hour ago, Wheatwacked said:

Elevated concentrations of homocysteine in blood may be an independent risk factor for the development of atherosclerosis. Elevated homocysteine concentrations can be caused by decreased methylation of homocysteine to form methionine, as occurs in folate deficiency. A parallel pathway exists for methylation of homocysteine, in which choline, by way of betaine, is the methyl donor. Choline deficiency in mice and humans is associated with increased plasma homocysteine

The Connection Between Anemia and Celiac Disease: What We Know

Normally, vitamin B12, vitamin B6, and folic acid and choline break down homocysteine. There should be very little homocysteine left in the bloodstream. If you have high levels of homocysteine in your blood, it may be a sign of a vitamin deficiency, heart disease, or a rare inherited disorder. In my case supplementing choline brought my mine down to normal.

Pernicious Anemia (also called Anemia of chronic disease) happens when you have an autoimmune disease or other illness lasts longer than three months and that causes inflammation. 

per·ni·cious   adjective, having a harmful effect, especially in a gradual or subtle way. "the pernicious influences of the mass media"

Your blood tests indicate Celiac Disease so dealing with that (Gluten Free Diet and increase deficient vitamin and minerals) may solve your symptoms. An endoscopy while eating gluten will give you a baseline for damage

It often takes 10 years for the doctors to get over the cultural denial that wheat gluten is a problem so they call it pernicious because the cause is unknown to them. My aunt died of pernicious anemia in 1985. Celiac Disease was never considered even though my son was diagnosed as an infant in 1976. Meantime more damage is done through inappropriate treatments. Celiac Disease causes malabsorption of nutrients even if you are eating the best diet choices. Malabsorption can cause high calorie malnutriton and the specific sypmtoms will vary with your own genetics and dificiencies. 

Vitamin D is low in almost every autoimmune disease and higher levels help mitigate the autoimmune response. Low potassium and choline jntake are common in the western diet, blood tests do not reflect deficiencies and rarely tested for. 

 

 

Wheatwacked, I'm not sure at all that pernicious anemia and anemia of chronic disease are the same thing. If you look at the outline presented in the article from your first link the two are separate numbers on the outline and when I google that question I do not find they are equivocated. However, both seem to have a common component in their genesis and that is inflammation. But maybe I missed something. Do you have a reference that provides evidence they are the same?

Edited by trents
Wheatwacked Veteran
48 minutes ago, trents said:

Do you have a reference that provides evidence they are the same?

no.


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Wheatwacked Veteran
(edited)

although there is this: "Pernicious anemia is mainly thought to be an autoimmune disorder that hurts the parietal cells in the stomach and inhibits the proper functioning of intrinsic factor." https://www.healthline.com/health/pernicious-anemia#vs-b-12-deficiency

I can see how doctors eliminating Celiac offhand could misdiagnose.

 

Edited by Wheatwacked
trents Grand Master
(edited)
3 minutes ago, Wheatwacked said:

although there is this: "Pernicious anemia is mainly thought to be an autoimmune disorder that hurts the parietal cells in the stomach and inhibits the proper functioning of intrinsic factor." https://www.healthline.com/health/pernicious-anemia#vs-b-12-deficiency

 

Yes, that is the etiology of pernicious anemia. One of our other mods corrected me on my own misunderstanding of pernicious anemia a while back when I posted incorrectly that it was caused by damaged villi. Actually, the parietal cells are found in the stomach. I was grateful for the correction as I don't want to be passing on misinformation.

Edited by trents
Wheatwacked Veteran

Hold on, maybe I did find a link.

Quote

 

The inability to make intrinsic factor may be caused by several things, such as:

Chronic gastritis

Surgery to remove all or part of the stomach (gastrectomy)

An autoimmune condition, where the body attacks its own tissues

Other types of megaloblastic anemia may be linked with type 1 diabetes, thyroid disease, and a family history of the disease.    https://www.hopkinsmedicine.org/health/conditions-and-diseases/vitamin-b12-deficiency-anemia

 

 

Russ H Community Regular
8 hours ago, Wheatwacked said:

Hold on, maybe I did find a link.

There are several ways that coeliac disease can lead to impaired B12 absorption.

1. Autoimmune pernicious anaemia is more common in people with other autoimmune conditions. In this case, either the parietal cells in the stomach that secrete intrinsic factor (IF) are destroyed, or antibodies to IF itself are made.

2. Impaired secretion of IF due to chronic gastritis, which is common with coeliac disease.

3. Impaired absorption of the B12-IF complex in the terminal ilium due to inflammation.

4. Removal of B12 from the gut by small intestine bacteria overgrowth (SIBO) that is common in coeliac disease.

 

Russ H Community Regular

This diagram of B12 absorption was posted on the BMJ Twitter feed.

https://twitter.com/bmj_latest/status/1254724484747210752

In the natural diet, B12 is only found bound to animal protein. It is cleaved from the protein by the proteolytic action of pepsin. Pepsin itself is formed from pepsinogen in the presence of stomach acid - this is why proton pump inhibitors can cause B12 deficiency as stomach acid is necessary to release animal B12. B12 supplements do not need pepsin or stomach acid as they are already unbound.

Once free, the B12 strongly binds to haptocorrin (also called R-binder), which is secreted in saliva and gastric mucus. The B12-haptocorrin complex protects the B12 from the acid environment of the stomach while it is carried into the dudodenum along with intrinsic factor (IF) released by parietal cells in the stomach.

As the B12-haptocorrin complex moves into the 2nd segment of the duodenum, proteases released by the pancreas break down the haptocorrin releasing B12. Free B12 then forms a complex with IF and is carried as such to the ileum of the small intestine where it is absorbed.

I would think that the most common cause of B12 deficiency in coeliac is due to malabsorption in the ileum.

bmb-b12.webp

trents Grand Master

I think there may be some vegetarian sources of B12 that involve fermentation processes: 

Natural Vegan B12 Sources

When it comes to vegan sources of vitamin B12, it’s widely agreed upon by medical and nutritional professionals that the most reliable are B12 fortified foods and supplements.

While there are some natural plant sources of B12 (and some with relatively high concentrations), unfortunately the evidence is not yet strong enough for you to rely on them solely.

So it’s important to take the following vitamin B12 vegan foods with a pinch of salt, and avoid relying on them as your sole source.

1. Tempeh

Up to 14.8mcg / 370% DV per 100g

Fermented foods are becoming increasingly popular because of the potential benefits when it comes to digestive health and the gut biome. On top of that, they may also be a source of vegan B12 – particularly tempeh, or fermented soy beans.

Interestingly, the soy beans themselves do not contain B12, but it’s actually generated during the fermenting process.

Lactobacillus bacteria is a bacteria commonly found fermented foods which has been shown to produce some B12, but there’s yet to be enough hard evidence to suggest it is a reliable source.

This is also the case with Kimchi – a Korean dish of fermented cabbage. One study calculated 0.18-0.24mcg of B12 per 100g, but this is not necessarily representative of all store-bought varieties.

2. Chlorella

80-100mcg / 2000-2500% per 100g

Algae like chlorella and spirulina are often brought up when it comes to natural sources of B12.

While there is some good evidence to suggest chlorella can contain some B12 precursors and may be a viable option, most of the evidence shows that spirulina is NOT a reliable source (and may even negatively impact B12 levels).

3. Nori Seaweed

11-42mcg / 275-1050% DV per 100g

Nori is a great source of iodine, another micronutrient that vegans and vegetarians sometimes need to be aware of.

When it comes to B12, evidence suggests that raw nori could be a viable source. Interestingly, when nori is cooked or dried, it seems the B12 levels deteriorate. Like spirulina, we start to see high amounts of ‘pseudo-vitamin B12’, which may actually negatively impact B12 levels.

4. Cremini Mushrooms

Up to 3-4% DV per 100g

There is some evidence to suggest that certain types of mushrooms may contain active B12. One such ‘shroom is the Cremini.

Some sources suggest that 100 grams of mushrooms can contain up to 26 micrograms of vitamin B12, but experts warn that they should not be relied upon as a primary source. The guys at World’s Healthiest Foods conclude:

“Vitamin B12 is not always detected in mushrooms, including crimini mushrooms. When vitamin B12 is detected in mushrooms, it is usually found on the outermost portions of the mushrooms, suggesting that bacteria on the mushroom surface may have produced the vitamin B12 rather than the mushrooms themselves.”

https://www.freshnlean.com/blog/vegan-b12-sources/

Seems to be questionable, however, and not necessarily reliable.

Russ H Community Regular

Only bacteria and archaea have the necessary biological pathways to make B12. You can find it in some fermented foods and it is also found in some seaweeds due to a symbiotic relationship between the plant and bacterial colonies growing on it. I think these are very unreliable sources. Supplementary B12 is manufactured by industrial bacterial fermentation. Ruminants derive their B12 from bacterial fermentation in the stomach. The human colon is rich in B12 from bacterial activity but is this is too far along the gut for B12 to be absorbed. Herbivores such as rabbits obtain B12 from eating their own pellets.

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