Flattened Villi Visible, Still No Diagnosis

[mrskchart]

I need answers. I have recently under gone a lot of medical testing and have been having intestinal/digestive problems for 10 years. I have had extensive blood work done, in which they found several vitamin deficiencies (calcium, B12, magnesium, zinc, D) and deficient levels of IgA (immunoglobulin A). I was sent to a gastroenterologist for an EGD and colonoscopy. I was diagnosed with ulcerative colitis, but he also said that my small intestine showed signs of flattened villi which is typical of celiac disease. I have read on the celiac forums that it is hard to diagnose even with a biopsy. There are several possibilities for "False Negatives." My question to you is, "Since I have so many of the MAJOR symptoms of celiac disease, do you think the appearance of the flattened villi, indicates celiac disease?"

[jerseyangel]

I need answers. I have recently under gone a lot of medical testing and have been having intestinal/digestive problems for 10 years. I have had extensive blood work done, in which they found several vitamin deficiencies (calcium, B12, magnesium, zinc, D) and deficient levels of IgA (immunoglobulin A). I was sent to a gastroenterologist for an EGD and colonoscopy. I was diagnosed with ulcerative colitis, but he also said that my small intestine showed signs of flattened villi which is typical of celiac disease. I have read on the celiac forums that it is hard to diagnose even with a biopsy. There are several possibilities for "False Negatives." My question to you is, "Since I have so many of the MAJOR symptoms of celiac disease, do you think the appearance of the flattened villi, indicates celiac disease?"

Hi and welcome!

Yes, I most certainly think that your flattened villi, coupled with your other sypmtoms indicate Celiac. No doubt in my mind.

Actually, the biopsy is still considered the "gold standard" when it comes to diagnosing the disease--but that is slowly changing. A positive one rules it in, but a "negative" one does not necessarily rule it out since the damage tends to be patchy.

[mrskchart]

My villi were flattened in patchy spots, but it could be because I was pretty much not eating gluten since august and then just had the tests done in december.

[Fiddle-Faddle]

My understanding is that the current definition (the so-called "gold standard") of celiac diagnosis is based on flattened villi. That's what they look FOR when they are trying to figure out if you have celiac disease.

So the appearance of flattened villi is indeed confirmation that your symptoms are those of celiac. Yes, patchy damage is just as much a positive diagnosis as totally wiped-wiped out villi!

Welcome to the club!!!

It's a good club, really--we don't have to buy any medicines, we don't need surgery, we don't have to buy ANYTHING.

We just need to avoid wheat, rye, barley, and oats. Most of us thought it was extremely difficult--at first. But there are so many geniuses out there who come up with gluten-free recipes for ANYTHING you might want, that there is no need to feel deprived of anything except for the first couple of months.

It is important to let your intestine--and those flattened villi--heal, and that means you should not try any of those gluten-free substitutes for bread, cakes, cookies, pastas, etc., until you are healed. The gluten-free substitutes are very hard on a damaged tummy. Most of us had to eliminate dairy for a while, too for the same reason.

But feeling better--ALL better--is SO worth it!

[aikiducky]

I don't understand why your doctor didn't diagnose you with celiac if you have flattened villi? Did he explain why?

There is a gradation of damage in celiac (the following is from Wikipedia but it's well researched, you can find articles in gastrointestinal journals and such):

"The classic pathology changes of coeliac disease in the small bowel are categorized by the "Marsh classification":[30]

* Marsh stage 0: normal mucosa

* Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes

* Marsh stage 2: proliferation of the crypts of Lieberkuhn

* Marsh stage 3: partial or complete villous atrophy

* Marsh stage 4: hypoplasia of the small bowel architecture"

Only Marsh 3 and higher used to be considered enough for celiac, but nowadays patients often see a doctor before they get that sick, so it's starting to be recognised that even Marsh 1 can be a sign of celiac. But in your case it shouldn't even be a question since it sounds like you have Marsh 3? I think it might be worthwhile to take this up with the doc, or seek a second opinion.

Pauliina

[ravenwoodglass]

I need answers. I have recently under gone a lot of medical testing and have been having intestinal/digestive problems for 10 years. I have had extensive blood work done, in which they found several vitamin deficiencies (calcium, B12, magnesium, zinc, D) and deficient levels of IgA (immunoglobulin A). I was sent to a gastroenterologist for an EGD and colonoscopy. I was diagnosed with ulcerative colitis, but he also said that my small intestine showed signs of flattened villi which is typical of celiac disease. I have read on the celiac forums that it is hard to diagnose even with a biopsy. There are several possibilities for "False Negatives." My question to you is, "Since I have so many of the MAJOR symptoms of celiac disease, do you think the appearance of the flattened villi, indicates celiac disease?"

Welcome to the board, you are celiac. There is a good chance once you get onto the diet the colitis will resolve. You are definately diagnosed no waffling there with the flattened villi. Be very cautious of any meds that you are prescribed and make sure you check them for gluten, even if they are meds for GI conditions it does not mean they are safe for you. I hope you get on the diet ASAP, you have found a great place for info and support and ask any questions you need to.

[mrskchart]

My understanding is that the current definition (the so-called "gold standard") of celiac diagnosis is based on flattened villi. That's what they look FOR when they are trying to figure out if you have celiac disease.

So the appearance of flattened villi is indeed confirmation that your symptoms are those of celiac. Yes, patchy damage is just as much a positive diagnosis as totally wiped-wiped out villi!

Welcome to the club!!!

It's a good club, really--we don't have to buy any medicines, we don't need surgery, we don't have to buy ANYTHING.

We just need to avoid wheat, rye, barley, and oats. Most of us thought it was extremely difficult--at first. But there are so many geniuses out there who come up with gluten-free recipes for ANYTHING you might want, that there is no need to feel deprived of anything except for the first couple of months.

It is important to let your intestine--and those flattened villi--heal, and that means you should not try any of those gluten-free substitutes for bread, cakes, cookies, pastas, etc., until you are healed. The gluten-free substitutes are very hard on a damaged tummy. Most of us had to eliminate dairy for a while, too for the same reason.

But feeling better--ALL better--is SO worth it!

Yes, I have done the rice diet for a month where you eat nothing but rice, vegetables, and fruits and from there we introduced milk products, in which, I can tolerate that only in small doses, like creamer in my coffee. So, when my doctor said gluten free, I immediately thought, woohoo, more stuff I can eat than before.

[mrskchart]

I don't understand why your doctor didn't diagnose you with celiac if you have flattened villi? Did he explain why?

There is a gradation of damage in celiac (the following is from Wikipedia but it's well researched, you can find articles in gastrointestinal journals and such):

"The classic pathology changes of coeliac disease in the small bowel are categorized by the "Marsh classification":[30]

* Marsh stage 0: normal mucosa

* Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes

* Marsh stage 2: proliferation of the crypts of Lieberkuhn

* Marsh stage 3: partial or complete villous atrophy

* Marsh stage 4: hypoplasia of the small bowel architecture"

Only Marsh 3 and higher used to be considered enough for celiac, but nowadays patients often see a doctor before they get that sick, so it's starting to be recognised that even Marsh 1 can be a sign of celiac. But in your case it shouldn't even be a question since it sounds like you have Marsh 3? I think it might be worthwhile to take this up with the doc, or seek a second opinion.

Pauliina

I agree. I see a naturalist doctor that has me on supplements for the vitamin deficiencies I have, and she monitors my levels. She agreed that it is celiac, but I have not met back with the gastro doctor yet. I think I see him around the end of december.

[mrskchart]

Welcome to the board, you are celiac. There is a good chance once you get onto the diet the colitis will resolve. You are definately diagnosed no waffling there with the flattened villi. Be very cautious of any meds that you are prescribed and make sure you check them for gluten, even if they are meds for GI conditions it does not mean they are safe for you. I hope you get on the diet ASAP, you have found a great place for info and support and ask any questions you need to.

Thank you. I actually have been on the celiac forum reading all the questions and gathering as much information as possible. I have been on the gluten free diet for 2 weeks now and can already tell a difference. You were right, most of the colitis symptoms have resided. I told my mom about a year ago that I could not handle wheat and milk. I had a positive allergy test for both, but we didn't know if it affected my sinus's or my stomach. Well, I did not know about celiac and with enough research on this website, I was able to talk to my doctor and of course the EGD test was done. Now here, I am.

[Fiddle-Faddle]

Yes, I have done the rice diet for a month where you eat nothing but rice, vegetables, and fruits and from there we introduced milk products, in which, I can tolerate that only in small doses, like creamer in my coffee.

Yikes, no protein or iron-containing foods?

[Joni63]

It's good to know your feeling better on the diet already.

I just wanted to say that if I were in your situation, I think I'd be looking around for another GI doctor. Your naturalist doctor sounds really good, but if your GI doctor can't diagnose you with celiac I doubt he'll be very adept at treating you and your symptoms.

This is a great forum with lots of helpful people. Glad your here and welcome!

[loco-ladi]

Lets assume you go gluten-free (gluten free) things improve, I would also however suggest going dairy free or VERY dairy light for at least 6 months then add it back very slowly as some have issues with dairy at first but some can add it back AFTER they heal......

Is the diet results alone going to be enough to keep you on the diet or will you need medical proof this is your issue.........

I ask this because once you go gluten-free you will have to return to eating gluten (suggestions vary from 6 weeks to 6 months of eating gluten) in order to get a positve result for blood or biopsy........

If the diet alone is enough for you by all means try it and stick to it and see what happens then join the "I am celiac but the Dr wont believe me" club, lol Thats the one I am in just so you know... I do however have others in my family that are diagnosed.

[hathor]

Plant-based diets are not deficient in protein or iron.

[mrskchart]

Yikes, no protein or iron-containing foods?

Not for that first month, but after that, I could start having fish and chicken.

[mrskchart]

It's good to know your feeling better on the diet already.

I just wanted to say that if I were in your situation, I think I'd be looking around for another GI doctor. Your naturalist doctor sounds really good, but if your GI doctor can't diagnose you with celiac I doubt he'll be very adept at treating you and your symptoms.

This is a great forum with lots of helpful people. Glad your here and welcome!

Yes, I have thought about finding a new doctor as well. It is in an office building where everyone there is a gatroenterologist and think they are all competing amongst themselves to see who can see the most patients in one day. My naturalist doctor has spent over an hour just in one appointment. I really like her, but she does not do medical procedures, like EGD.

[mrskchart]

Lets assume you go gluten-free (gluten free) things improve, I would also however suggest going dairy free or VERY dairy light for at least 6 months then add it back very slowly as some have issues with dairy at first but some can add it back AFTER they heal......

Is the diet results alone going to be enough to keep you on the diet or will you need medical proof this is your issue.........

I ask this because once you go gluten-free you will have to return to eating gluten (suggestions vary from 6 weeks to 6 months of eating gluten) in order to get a positve result for blood or biopsy........

If the diet alone is enough for you by all means try it and stick to it and see what happens then join the "I am celiac but the Dr wont believe me" club, lol Thats the one I am in just so you know... I do however have others in my family that are diagnosed.

Well, yes, I think diet alone is enough for me since I have been getting so many responses that the villi are enough proof there. I have definitely limited and cut my milk products. The extent of my milk products is a little creamer in my coffee and then the other day I had corn tortilla tacos with lightly sprinkled cheddar cheese and no problem. I don't want to chance any more than that. I am still drinking soy milk as well as eating soy ice cream, not the kind with cookies in it though because I have become a label reader and found that those have WHEAT. I think I am getting good at reading the food labels.