Help With Endoscopy Results

[rubyred]

Last year I received a blood test for Celiac as well as an endoscopy. The blood test was negative (I didn't get the Celiac panel unfortuntely). The results from the endoscopy were: "...The gastric mucosa was somewhat atrophic with petechial type erythema. The duodenal mucosa was normal expect some mild blunting of villi at the second portion of the duodenum. Retroflexion of the endoscope revealed a hiatal hernia...."

My doctor diagnosed me with chronic gastritis and esophagitis. She told me I don't have celiac. I felt like those diagnoses didn't really account for my main symptoms. I decided to use Enterolab after suffering from excessive (and embarassingly foul smelling) gas, diarrhea, stomach cramping, pain, bloating, constant stomach gurgling, acid reflux, loss of period, and an odd rash/small itchy bumps on one of my fingers. The results showed I have a DQ8 and a DQ1 gene. It also came back positive for gluten sensitivity and mild malabsorption. I have since gone gluten free and feel 100% better, so I know that I need to remain gluten free to be healthy.

Is it possible that I have celiac, and the doctor just didn't read the results from the endoscopy correctly? I know I had mild blunting of my villi, could the damage be too mild to be detected as celiac? Can anyone help me understand the other terms/abnormal findings from my endoscopy? Thank you for any help you can give!

[happygirl]

I would take your bloodwork results, and your biopsy report, to a new doctor for a second opinion. Preferably one that knows about Celiac.

[Darn210]

I would take your bloodwork results, and your biopsy report, to a new doctor for a second opinion. Preferably one that knows about Celiac.

. . . along with a list of your previous symptoms and your positive dietary response.

[ravenwoodglass]

"...The gastric mucosa was somewhat atrophic with petechial type erythema. The duodenal mucosa was normal expect some mild blunting of villi at the second portion of the duodenum. Retroflexion of the endoscope revealed a hiatal hernia...."

You need a different doctor. Were you told to keep eating gluten and come back in a year or so to be rescoped by any chance?

That was a postive biopsy.

[rubyred]

My doctor never even suggested I try to eliminate gluten to see if I felt better. She never commented on the abnormal findings of my endoscopy....just said that I have chronice gastritis/esophagitis and gave me prescription meds (that I never got filled). At the time, I didn't know that much about Celiac so I wasn't prepared to ask further questions. Now, I've done a lot of research and wish I had pressed her more. I did tell her that I've gone gluten-free and feel much better but she isn't really taking it seriously. I haven't seen her in awhile because I always leave feeling disregarded and frustrated. I am basically on my own, trying to diagnose myself, which I know isn't good. I tried to get support from my PCP but she seemed to think I am crazy going gluten free without Celiac. I've been gluten free for about 6 months, so I'm not really looking to go back on gluten to get another endoscopy which may or may not show anything, but I'd definitely feel better having a definite diagnosis. Oh well.

[ravenwoodglass]

My doctor never even suggested I try to eliminate gluten to see if I felt better. She never commented on the abnormal findings of my endoscopy....just said that I have chronice gastritis/esophagitis and gave me prescription meds (that I never got filled). At the time, I didn't know that much about Celiac so I wasn't prepared to ask further questions. Now, I've done a lot of research and wish I had pressed her more. I did tell her that I've gone gluten-free and feel much better but she isn't really taking it seriously. I haven't seen her in awhile because I always leave feeling disregarded and frustrated. I am basically on my own, trying to diagnose myself, which I know isn't good. I tried to get support from my PCP but she seemed to think I am crazy going gluten free without Celiac. I've been gluten free for about 6 months, so I'm not really looking to go back on gluten to get another endoscopy which may or may not show anything, but I'd definitely feel better having a definite diagnosis. Oh well.

If you haven't already I would suggest making sure that you have copies of the report and also get copies of all blood work or other tests you have done. Sometimes with females an OB/GYN can be helpful getting the bone scan and vitamin and mineral panels that you should have done at diagnosis.

You can learn all you need to know about the ins and outs of the diet here and in other sites like the Celiac Sprue Association, the NIH and others. For some having an 'official' diagnosis in their records has caused problems down the line with insurance, although I myself haven't encountered any.

How have you responded to the diet? Most of us have ups and downs at first but in general are you seeing an improvement? If you feel you really need a definite diagnosis then what I would do first would be to have another GI doctos review the report from the endoscopic procedure that you already had done. If in another procedure now with you being gluten-free, if YOU decide to have it redone, the scope shows healing that also would contribute to a surity of the diagnosis.

[rubyred]

Thank you so much for your replies. They are very helpful.

My response on the diet was immediate and unbelievable! Within 2 days, my main symptoms subsided. I was at the point that I couldn't be around people because my gas was that bad. ugh. But literally, almost instantly, I felt soo much better. I have eaten gluten a few times after going gluten-free and pretty much all of my symptoms returned (gas, diarrhea/soft stools, acid reflux, stomach gurgling). And they lasted for at least 2 or 3 days or longer if I ate a lot. I later discovered I can't eat soy either (I've been dairy free for awhile) because I was still a tiny bit gassy/having diarrhea and I linked it back to soy. I can eat a small amount of soy and be okay but I don't eat any gluten or dairy. Also, since going gluten-free, my period has returned and I haven't missed in about 4 months.

I guess it doesn't really matter if I have an official diagnosis, but sometimes I just think it would be easier to have one. Easier to explain to people, easier to stay diligent in remaining gluten-free, etc. In my heart I know what I need to do to be healthy, but it would be nice to have that gold standard diagnosis! I'm sure lots of people can relate.

[ravenwoodglass]

Thank you so much for your replies. They are very helpful.

My response on the diet was immediate and unbelievable! Within 2 days, my main symptoms subsided. I was at the point that I couldn't be around people because my gas was that bad. ugh. But literally, almost instantly, I felt soo much better. I have eaten gluten a few times after going gluten-free and pretty much all of my symptoms returned (gas, diarrhea/soft stools, acid reflux, stomach gurgling). And they lasted for at least 2 or 3 days or longer if I ate a lot. I later discovered I can't eat soy either (I've been dairy free for awhile) because I was still a tiny bit gassy/having diarrhea and I linked it back to soy. I can eat a small amount of soy and be okay but I don't eat any gluten or dairy. Also, since going gluten-free, my period has returned and I haven't missed in about 4 months.

I guess it doesn't really matter if I have an official diagnosis, but sometimes I just think it would be easier to have one. Easier to explain to people, easier to stay diligent in remaining gluten-free, etc. In my heart I know what I need to do to be healthy, but it would be nice to have that gold standard diagnosis! I'm sure lots of people can relate.

I am so glad to hear that the diet has helped you so much. Many of us do find that soy and dairy are a problem, good for you for figuring it out so quickly, it took me forever to figure it out. If that gold standard diagnosis is really important do get those biopsy reports to another more knowledgeable GI, from what I can see you actually do have one, your doctor, or the pathologist that gave the final line on the biopsy report was just to ignorant to recognize. it.

[rubyred]

Just curious Ravenwood - is it the mild blunting of villi that makes you think it's a positive biopsy? From what I've read, other intolerances, like soy or casein, can cause blunting? I think your idea is great though, and I am planning on getting copies of my biopsies and finding a new doctor!! Thanks!

[ravenwoodglass]

Just curious Ravenwood - is it the mild blunting of villi that makes you think it's a positive biopsy? From what I've read, other intolerances, like soy or casein, can cause blunting? I think your idea is great though, and I am planning on getting copies of my biopsies and finding a new doctor!! Thanks!

It is the whole report that reads like a positive celiac diagnosis. Do get those slides reviewed by a knowledgeable doctor and lab. How many samples did he take? He should have taken at least 5 or 6.

[rubyred]

I believe he took 6, but I'm not positive.

I live in Baltimore, so I'd love to see Dr. Fasano, but I'm sure there's a pretty big waiting list and I'm not sure if he would take my insurance. I'll have to look into it though. I guess the wait isn't an issue, because I'm already gluten free and he would just be looking over my reports. Hmmm, I'll have to seriously look into this!

[happygirl]

You may already have the evidence for a Celiac diagnosis - just a physician who interpreted the report incorrectly.

You could look into finding a local Celiac support group, and asking them for a referral to a doctor that is knowledgable about Celiac.

No way to know if Dr. F has a long waiting list and takes your insurance unless you call and ask. Open Original Shared Link See "appointment lines" on the right hand side.

[Lisa]

Just curious Ravenwood - is it the mild blunting of villi that makes you think it's a positive biopsy? From what I've read, other intolerances, like soy or casein, can cause blunting? I think your idea is great though, and I am planning on getting copies of my biopsies and finding a new doctor!! Thanks!

I'm not Raven, but mild blunting of the villi is consistance with Celiac Disease. Your pathology report is very similar to mine. That, coupled with your positive dietary response to the removal of gluten, is a diagnosis.

As mentioned, a more knowledgeable doctor could help you with a more defined diagnosis.

Welcome to the Club!

[rubyred]

So it's been awhile, but I saw Dr. Fasano in late Feb and was able to send him my EGD slides in March so that he could review them. When I first saw him, he read over my records and said that he felt it was most likely Celiac but he couldn't officially diagnose without seeing the slides. He sounded pretty sure; I asked him if it wasn't celiac, then what would've caused my villi to be blunted. He basically said nothing else would cause it. (I have read that soy and casein intolerances can cause blunting even though he didn't mention this) Well, I just got a letter in the mail saying that the EGD was normal. His nurse wrote that because my symptoms have improved off gluten, that I could have non celiac gluten sensitivity.

Before I was diagnosed, I was eating a lot of soy. Now, I don't eat any because I get some GI symptoms when I do. I'm starting to question if maybe it was the soy that blunted my villi? I'm lactose intolerant and have been avoiding dairy for awhile..or at least milk, cream, things high in lactose. I'm thinking about testing gluten out and seeing if I feel symptomatic. The thing that makes me hesitate is that I do have a DQ8 gene, so even though I don't have celiac, the potential is there. I don't know....now I rethinking this. I don't want to restrict gluten for the rest of my life if I don't have to. I've heard that intolerances can be outgrown sometimes, so maybe it is possible for gluten intolerances to be outgrown? Any advice?

[stegenrae]

I guess it doesn't really matter if I have an official diagnosis, but sometimes I just think it would be easier to have one. Easier to explain to people, easier to stay diligent in remaining gluten-free, etc. In my heart I know what I need to do to be healthy, but it would be nice to have that gold standard diagnosis! I'm sure lots of people can relate.

i feel exactly the same way (only add in that i'd like my husband to take the gluten-free need as seriously as i need him to...)!

this is my first post here; i've been in semi-denial about being celiac since february when i had my endoscopy that pretty much came back identical to yours. the biopsy came back negative, though, as did my blood test, so the doc just shoved a prescription for reflux meds at me and told me i was fine. i'm finally getting my ducks in a row to go totally gluten-free.

anyway, i'm glad i found your post--it makes me feel better about my own non-dx!

peace,

raegan

eta: my understanding is that the villi blunting can be early stage celiac, and that a biopsy positive is really achievable only after acute or prolonged celiac damage has occurred. so if you (and i) caught it relatively early, our bodies might not have had the damage the docs are trained to look for, yk?

also, i believe you can repair allergies, but since celiac isn't really an allergy, but an autoimmune issue, so if you have the genetic susceptibility, my guess is that it's not something that will go away.