Here Is A Head Scratcher For You.....

[dolly]

I finally found an excellent and up to date doctor in my area (His name is Doctor Laskin out of Paoli Hospital in PA if you are interested) and he ran the standard blood work on me to determine if I have Celiacs or are just gluten sensitive. While I tested positively genetically, he felt that my blood work didn't come back strongly enough to have Celiacs so he diagnosed me gluten sensitive. But, he felt that I could have a bleeding ulcer (since I am anemic) so yesterday he did an upper GI endoscopy and colonoscopy on me to find out.

When I woke up he told me that he had to do biopsy for my small intestine because he felt he had in fact found signs of Celiacs disease. Now, I have been gluten free since Nov '07. There have been times when I accidentially ate something with gluten in it but maybe only a handful of times since Nov.

So, now I have to wait two weeks for the results of the biopsy to come back. But, I was really shocked. I absolutely didn't expect him to find any problems left over from eating gluten.

Has anyone else heard of this happening? Blood test negative but colonoscopy maybe positive after so much time?????

[MyMississippi]

I can see where that would be entirely possible------ you may be a celiac that had very obvious damage to your small intestine--- and it hasn't healed completely yet even though you have been gluten free----

When he scoped you---- he saw the damage to the villi----

Biopsy of the villi is the "gold standard" for diagnosis-------(not the blood test---which can be misleading-----)

Sometimes, it takes quite awhile for the gut to heal after being gluten free---- yours may be better---- but not healed completely yet---

[Gemini]

I can see where that would be entirely possible------ you may be a celiac that had very obvious damage to your small intestine--- and it hasn't healed completely yet even though you have been gluten free----

When he scoped you---- he saw the damage to the villi----

Biopsy of the villi is the "gold standard" for diagnosis-------(not the blood test---which can be misleading-----)

Sometimes, it takes quite awhile for the gut to heal after being gluten free---- yours may be better---- but not healed completely yet---

You cannot see damage to the villi just from doing an endoscopy....the villi are microscopic and that's why the sample needs to be sent to a lab

for study. You also cannot diagnose Celiac Disease via a colonoscopy....not even close to where the damage will be! If Chrohn's or Colitis were suspected, then the colonoscopy would be needed for diagnosis of those 2 conditions.

The blood work, if done correctly with a full panel done, is an extremely good tool to use but a negative result would not rule out celiac disease. We all know the reasons why. If a person is still showing damaged villi, then it is most likely due to ingestion of gluten, unknowingly or otherwise, or other food intolerances. My intestinal tract was totally trashed at time of diagnosis and I was gaining weight and feeling 100% better after 6 months but I was absolutely NOT ingesting any gluten. Even taking into account people have different recovery times, I would guess that after almost 1 year, gluten is finding it's way in.

The other problem, dolly, is that you have been gluten-free for almost a year so your blood work will most likely be negative anyway. Useless to do it at this point. The doctor could also have done an occult stool test for blood before putting you through a colonoscopy if he really thought you had a bleeding problem. Wait until the biopsy samples come back to see what is going on.l If there is still villi damage, you need to re-check everything you put in your mouth to make sure there is nothing containing the evil grain! What was the reason you went back to a doctor if you have already gone gluten-free? Are you symptomatic?

[dolly]

Gemini-

Some quick things:

1) the doctor saw the damage during the Upper endoscopy part of my exam yesterday. He said something to the effect that the villi (or whatever ) looked pushed over-whatever that means.

2) I had 2 sets of blood tests done. One done before I went gluten free and one 6 months after. Both sets came back negative. But, I do have the genetics for it.

3) The doctor performed the upper endoscopy and colonoscopy because I am anemic and he found blood in my stool. So, he thought that perhaps I had a bleeding ulcer. Instead, he found numerous problems but none that would explain the blood with the exception of the vili isssue.

I just found an article on line

Open Original Shared Link

It explains that there are a few people out there that have negative blood tests for Celiacs but still have the disease since there biopsy comes back positive. So, I guess I answered my own question-lol!

Wow, I have been dealing with this disease/issue for a year now and still no clear diagnosis. My doc does , at the very least, feel I am gluten sensitive due to my reaction to gluten (diarrhea, headache, join pain, etc). But, for all of the people who are unclear about their diagnosis out there -shouldn't science be able to come up with a better way to diagnosis this disease?!?!?!? Oh well......

Thanks for all of your help and good luck to everyone!!!

[nikki-uk]

It is entirely possible to have celiac disease with a neg blood/positive biopsies

I think something like 3% of coeliacs are 'seronegative' (my hubby is one of them)

However, damage, as stated above is not visible to the naked eye (only under a powerful microscope) - but your small bowel might look red or inflamed with the naked eye

The only thing that puzzles me is that you've been gluten-free since last year

Do you feel better gluten-free???

[Gemini]

Gemini-

Some quick things:

1) the doctor saw the damage during the Upper endoscopy part of my exam yesterday. He said something to the effect that the villi (or whatever ) looked pushed over-whatever that means.

2) I had 2 sets of blood tests done. One done before I went gluten free and one 6 months after. Both sets came back negative. But, I do have the genetics for it.

3) The doctor performed the upper endoscopy and colonoscopy because I am anemic and he found blood in my stool. So, he thought that perhaps I had a bleeding ulcer. Instead, he found numerous problems but none that would explain the blood with the exception of the vili isssue.

I just found an article on line

Open Original Shared Link

It explains that there are a few people out there that have negative blood tests for Celiacs but still have the disease since there biopsy comes back positive. So, I guess I answered my own question-lol!

Wow, I have been dealing with this disease/issue for a year now and still no clear diagnosis. My doc does , at the very least, feel I am gluten sensitive due to my reaction to gluten (diarrhea, headache, join pain, etc). But, for all of the people who are unclear about their diagnosis out there -shouldn't science be able to come up with a better way to diagnosis this disease?!?!?!? Oh well......

Thanks for all of your help and good luck to everyone!!!

Thanks for the clarification, dolly! Yes, there are many who do not test positive on the blood work and then have positive biopsies so if you were originally diagnosed through a positive biopsy, you have Celiac Disease.

If can take a very long time to become positive for either test, even though damage is being done on a daily basis. Your gene test is also a strong indicator to add to the diagnosis testing. Often it takes a combination of testing plus a dietary trial to really nail the diagnosis.

As stated by nikki, a doctor can certainly see inflammation to the gut with the naked eye but villi cannot be seen unless it's under a microscope. No one can see villi with the naked eye. It does sound like Celiac because of all the inflammation you have. I am sure you will have answers with the biopsy results.

The anemia is a different story....that should clear up with a gluten-free diet. I was anemic for 20 years and now I am not....all because of the gluten-free diet and healing. I hope you can resolve that because it sure does run you down being anemic all the time. Good luck to you and I hope you get answers to your questions!

[dolly]

It is entirely possible to have celiac disease with a neg blood/positive biopsies

I think something like 3% of coeliacs are 'seronegative' (my hubby is one of them)

However, damage, as stated above is not visible to the naked eye (only under a powerful microscope) - but your small bowel might look red or inflamed with the naked eye

The only thing that puzzles me is that you've been gluten-free since last year

Do you feel better gluten-free???

Nikki, I absolutely feel 100% better without gluten in my diet. It is clear to me that gluten is a huge problem for my body.

Anyway, thanks everyone for your help!!

[MyMississippi]

Yes, the doctor CAN see damaged villi in the small intestine with the endoscope alone--------- the intestinal lining can be slick like tile in some patients and that would be entirely visible to the doctor looking thru the scope WITHOUT a biopsy--- The doctor knows what a normal intestinal lining looks like, and when there is damage he knows that is NOT normal----- small intestine that is slick like tile is NOT normal and very indicative of Celiac flattened villi ---- and can be clearly seen thru the scope, .---- but of course, HE WILL do a biopsy to confirm that it is indeed Celiac.

And then, there are others whose lining appears essentially normal thru the scope, and only a biopsy of the villi will tell the tale.

[dolly]

Yes, the doctor CAN see damaged villi in the small intestine with the endoscope alone--------- the intestinal lining can be slick like tile in some patients and that would be entirely visible to the doctor looking thru the scope WITHOUT a biopsy--- The doctor knows what a normal intestinal lining looks like, and when there is damage he knows that is NOT normal----- small intestine that is slick like tile is NOT normal and very indicative of Celiac flattened villi ---- and can be clearly seen thru the scope, .---- but of course, HE WILL do a biopsy to confirm that it is indeed Celiac.

And then, there are others whose lining appears essentially normal thru the scope, and only a biopsy of the villi will tell the tale.

WOW Mymississippi, you sound like you work for a gastroenterologist-ha,ha Thank you for explaining that!!