Can food allergies like milk and soy flatten villi?

[Matt13]

Hi Guys,

How are u? I am still in the  middle of "the storm" and recently i did repeated endoscopy but for some reason it was partially ok and partially not(due to bad handling with tissue samples). So some of the doctors suggest to repeat gastroscopy...and some do not....
Did anyone repeated gastroscopy due to bad taking of the histology tissue samples?

And also i cannot find this answer....can soy or milk/dairy products  cause flatten villi?

Thanks in davance!

[knitty kitty]

Hi, @Matt13,

About half of people with Celiac Disease react to Casein, the protein in dairy, in the same way as to the protein Gluten.  They have similar segments of polypeptides which trigger the autoimmune response of Celiac Disease.

Damage to the Villa lining the intestines can be patchy or beyond the reach of the endoscopy equipment.  

Hope this helps!

[Scott Adams]

Did you get a blood screening done for celiac disease? If so, feel free to share your results here. Normally this is done before a biopsy, and after a positive blood test.

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

[Matt13]

Hi Scott and Knitty!

Thanks for the answers! You are very kind!
Let put it this way:
1.I am now confirmed seronegative celiac. My Last push gastroscopy concluded that there is no atrophy and everything is ok in that regard.
2. From diagnostics perspective so far i have done multiple intestinal TUS, Mr Enterography, Multiple wide spectrum blood tests, Normal gastroscopy, Push gastroscopy(duodenum and jejunum)., Multiple X rays,Swallow test barium....i mean the whole package...
3. from doctors perspective i am in touch with 2-3 gastroenterologist, immunology and rheumatology doctor and general physician...and with psychiatric doctor.

My problem is that i am still feeling like "s$#&" EVERY DAY even now when i am on GFD and i am still losing weight with very little energy through day.
When i lay down, i do not feel pain or discomfort but during the day i feel bloated, intermitten pain in abdomen(usually upper QD and around belly), discomfort throught whole abdomen and other parts of body and with very little energy.

I am trying my  best to be 100 % GFD but i am on very light mediterian food diet. I am currently on gfd  13 months (with small mistakes)
Currently i am on ppi 20mg in the morning, now drinking ensure plus because of muscle and weight loss.
My diagnose procedure is now lasting almost 3 years and since then i have lost 13-15kg.

Please but please i am currently losing my mind...is there anybody who is going through this kind of hell like me?
What more can i do?

Thanks in advance,

Kind regards,

Matt

 

 

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Have you had symptom improvement on a gluten-free diet? If so, you may be in the NCGS area.

Also, are you eating oats, and have you tried cutting out dairy/casein?

[Matt13]

Hi Scott,

i think You misunderstand me i am confirmed seronegative celiac but i still feel shity.
I do not eat GLUTEN or Lactose. I am on gluten diet for 1year now and i am still dropping weight and muscle and still feel shitty.
I have done every possible test regarding abdomen...

Does somebody anybody have similar or same situation....?

Thank You



 

 

[Scott Adams]

Ok, sorry...do you eat oats? Around 10% of celiacs react to oats, even certified gluten-free oats. You may want to cut out oats and dairy/casein for a while to see if this helps. 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

Here is some more info on seronegative celiacs. 

You can still have celiac disease with negative blood test results, although it's not very common: 

Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/ 

Seronegative Celiac Disease - A Challenging Case:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/ 

Enteropathies with villous atrophy but negative coeliac serology in adults: current issues:
https://pubmed.ncbi.nlm.nih.gov/34764141/ 

 

[knitty kitty]

@Matt13,

Your symptoms sound similar to the ones I had.  I had developed nutritional deficiencies, in particular, thiamine deficiency.  Gastrointestinal BeriBeri has all those symptoms and the fatigue was horrible.  

Quick field test from WHO:  can you rise unaided from a squat?   If you have a serious thiamine deficiency, you cannot stand back up after squatting.  Really cool test. 

Read for yourself the article below, compare the symptoms, discuss with your doctors.  Doctors can administer high dose thiamine via IV and you will improve very quickly.  I had improvement within an hour.  No harm in trying, process of elimination and all that. Thiamine is safe and nontoxic even in high doses.  

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Are you aware regular Ensure Plus contains dairy?  Are you aware Plant Protein Ensure Plus contains oats?  Just checking.  

Have you tried the AutoImmune Protocol diet?  Highly recommend.  

Check out my blog to read excerpts of my journey and my clueless doctors.

Keep us posted on your progress!

[Matt13]

Hi Knitty!
Thanks for the reply! I can do squat but with alot of trouble and power. I will take all You advices in consideration and explore them further....
I am really lost in all of this...i mean villious atrophy can create soy, gluten, milk, casein....i mean what is left to eat?
So when i had first EGD histology was MArsh 3b. After 1y on gluten free diet and smaller intake of milk (mainly i was eating and drinking lactose free products) histology was OK and Villi was normal...although marked as "please repeat EGD because one of the sample was not representative". But mi Gastro doc says it is OK and i can continue gluten free diet.
So my questions are:

1.can i eat milk now or i am still trouble with casein/lactose...? 
2. Can casein create villous atrophy in duodenum  because i need to repeat in some time new EGD due to semi faulty histology sample?

Also BEST WISHES for NEW YEAR and Hollidays for everyone in this community!!!

[Scott Adams]

Regarding #1, you'll need to determine this yourself, as there aren't tests to determine this. I had issues with casein/milk during my recovery period, and had to avoid this for 2-3 years after my diagnosis. It can be a temporary intolerance for many celiacs that may go away after your villi recover.

There is research that I shared which indicates that this is true, but only in some people, and with the vast majority of celiacs gluten is the primary culprit that causes villi damage--most celiacs won't get damaged villi from casein.

[Matt13]

Thanks Scott! One more question how many of celiac had normal mucosa on naked eye (i mean endoscopy) but histology was postive like marsh 3 a or b?

 

[Scott Adams]

It's quite common for the mucosa to appear normal during an endoscopy in patients with celiac disease, especially in cases of Marsh 3a or 3b histological changes. Studies have shown that the "naked eye" assessment of the small intestine during endoscopy often misses the subtle changes associated with early or less severe villous atrophy.

This is why multiple biopsies from different parts of the duodenum, including the bulb, are essential for a reliable diagnosis. Visual clues like scalloping, nodularity, or atrophy may not always be visible, particularly in patients with less advanced disease.

In fact, research indicates that histology can reveal significant findings even when the mucosa looks normal on endoscopy, reinforcing the need for biopsy as the gold standard for diagnosing celiac disease. For anyone preparing to have an endoscopy, it's important to ensure that your gastroenterologist takes multiple biopsies from various areas to increase the likelihood of an accurate diagnosis.

[Matt13]

Scott! Thanks You are really the master of this things! Thanks!
One more question please, i did 2 EGD. In first EGD there was taken 2 samples from duodenum where they found MARSH 3b. In second EGD after 1year (i described in first post of this topic) they have taken multiple Samples from duodenum and jejenum.
Would doctor GI and histology expert doctor see if there were like something serious like small bowel cancer or neoplasms(especially in histology)?

[Matt13]

Sorry cut out.

Scott! Thanks You are really the master of this things! Thanks!
One more question please, i did 2 EGD. In first EGD there was taken 2 samples from duodenum where they found MARSH 3b. In second EGD after 1year (i described in first post of this topic) they have taken multiple Samples from duodenum and jejunum and everything is ok (other than some of the samples is not readable but the explanation is very small and short, villi form good samples is OK and  they only found inflammation in lamina propria.
Sorry, I am little overwhelm by this and scared so dr.google almost every-time frightens me. Would my GI and histology expert doctor see if there were like something serious like small bowel cancer or neoplasms(especially in histology)?

 

[Scott Adams]

I'm not a gastro doctor, but it seems reasonable to conclude that they would be able to spot any cancer-related issues during the endoscopy, at least in the areas that were checked.

[Deanne jones]

Hi Matt, like you I lost almost 3stone over 2yrs, my symptoms were exactly as you describe . 

  I was eventually referred  to a consultant who has been treating me for reflective coeliac.  I’ve been taking(  Budenofalk 3mg )steroids for the past 9 mths  and the course is coming to an end shortly. I’ve gained 2 stone and feel so much better in myself. Im due an endoscopy at the end of the course of steroids so unable to say if my villi’s have returned or my digestive system has repaired. But like you I was besides myself with worry. 

Apparently the condition is quite unknown and the consultant at the hospital I attend has been in contact  with  Sheffield hospital who specialises in this condition.

I hope this helps, 

 

Deanne

 

 

 

 

 

[Matt13]

Thanks Scott for Your time and reply!

[Matt13]

Hi Deanne! Thanks for support but mu other EGD show normal VA (but some of the samples were not readable) but overall normal egd so after 1 year there is normal villi.
I am glad that You solved our problem.

Kind regards,

matt

[Lotte18]

Hi Matt,  So sorry you're having to suffer all this.  I'm just chiming in on your dairy question because the answers are often far from what we or our doctors assume.  For example, I thought I could go back to having dairy once my intestinal villi healed.  I was fine for about 8 months.  And then I wasn't.  Started having weird issues with maintaining my balance while walking.  Even my PCP who has celiac didn't relate it to dairy.  Had to have a second endoscopy with enzyme testing.  Sure enough my pancreas no longer produces enough Lactase to process lactose.  My GI just brushed it off as, "common for people with celiac."    I'd never seen or heard that before.  I should have pressed him on it.  Common for celiacs who are women?  Common for celiacs of a certain age group?  But I was so surprised I didn't say anything.  Maybe Scott has more information on celiac and pancreatic function.  At least I'm back to walking upright!  

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Lotte18]

Hi Scott, I thought I'd be like "most people" and could go back to having dairy once my villi had healed.  But after dealing with neurological problems that cropped up long after my gut had healed it turned out that this just wasn't true.  I have no idea if celiac influences pancreatic enzyme production or if it's the other way around--for some of us-- but there is a very real relationship that isn't being discussed with patients.  The article just reiterates information that can mislead you if your real problem is pancreatic not villi related.  

[Scott Adams]

I'm not sure the article would be misleading, as it offers many different avenues to pursue for those with ongoing symptoms. The recommendation to keep a food diary and remove common food intolerance triggers would be a good way to discover issues with casein/milk, especially if you added that back to your diet after a couple of months and your symptoms returned. Many additional food intolerance issues can be permanent in some people. 

[knitty kitty]

On 1/8/2025 at 2:34 AM, Deanne jones said:

Hi Matt, like you I lost almost 3stone over 2yrs, my symptoms were exactly as you describe . 

  I was eventually referred  to a consultant who has been treating me for reflective coeliac.  I’ve been taking(  Budenofalk 3mg )steroids for the past 9 mths  and the course is coming to an end shortly. I’ve gained 2 stone and feel so much better in myself. Im due an endoscopy at the end of the course of steroids so unable to say if my villi’s have returned or my digestive system has repaired. But like you I was besides myself with worry. 

Apparently the condition is quite unknown and the consultant at the hospital I attend has been in contact  with  Sheffield hospital who specialises in this condition.

I hope this helps, 

 

Deanne

Hi, how are you doing? 

Have you tried a low histamine diet?  I was wondering because you said you had refractory celiac.  Steroids will lower histamine, but I wondered if you were following a low histamine diet in addition.  Have you been checked for nutritional deficiencies?  

[knitty kitty]

On 1/8/2025 at 9:39 AM, Lotte18 said:

Hi Matt,  So sorry you're having to suffer all this.  I'm just chiming in on your dairy question because the answers are often far from what we or our doctors assume.  For example, I thought I could go back to having dairy once my intestinal villi healed.  I was fine for about 8 months.  And then I wasn't.  Started having weird issues with maintaining my balance while walking.  Even my PCP who has celiac didn't relate it to dairy.  Had to have a second endoscopy with enzyme testing.  Sure enough my pancreas no longer produces enough Lactase to process lactose.  My GI just brushed it off as, "common for people with celiac."    I'd never seen or heard that before.  I should have pressed him on it.  Common for celiacs who are women?  Common for celiacs of a certain age group?  But I was so surprised I didn't say anything.  Maybe Scott has more information on celiac and pancreatic function.  At least I'm back to walking upright!  

Hi, how are you doing?

Have you been checked for nutritional deficiencies?  The pancreas uses lots of Thiamine to make digestive enzymes and insulin.  Deficiencies in Thiamine, or Vitamin D can affect the balance.

P. S. Interesting articles:

Proinflammatory cytokines inhibit thiamin uptake by human and mouse pancreatic acinar cells: involvement of transcriptional mechanism(s)

https://pmc.ncbi.nlm.nih.gov/articles/PMC8112188/

Histamine Intolerance Originates in the Gut

https://pmc.ncbi.nlm.nih.gov/articles/PMC8069563/

Non-responsive celiac disease may coincide with additional food intolerance/malabsorption, including histamine intolerance

https://pubmed.ncbi.nlm.nih.gov/33268003/

Histamine Intolerance—The More We Know the Less We Know. A Review

https://pmc.ncbi.nlm.nih.gov/articles/PMC8308327/

Edited January 14 by knitty kitty
Added Post Script

[Lotte18]

Hi Knitty Kitty,  Thanks for sending all of these articles.  Some of them are too complex for me to parse.  That said, I had extensive blood tests done when the ataxia started.  I was a little low on Vit. D.  My doc thought I might be low on Vit. K.  But no.  K levels were completely normal as were all of my B Vits. levels.  I take a D supplement but even with that, if I have lactose, I start to feel my head get inflamed.  It is what it is.