Confused

[Jean-Luc]

Ok, I have posted that I went in for an upper endoscopy because my primary care and my GI thought I had an ulcer. Biopsy results come back, call from GI two weeks ago, you have celiac please schedule an appointment for follow-up and discussion of options. Went on gluten-free diet, thank you all for the help and suggestions.

Yesterday, I went in for the follow-up. I really need some sort of explaination here because this is the confusing part. I was told there is NO damage to the villi, that some sort of enzyme testing done on the biopsy revealed that I may have sprue. GI wants me to go back on a gluten diet for a week and then get blood work.

Now here is the question, what does this mean that I came up positive on this test but no damage to villi? I was under the impression this is something that is more a yes or no if the biopsy results reflect sprue or is there some way that test results show it but I do not have it?

[nettiebeads]

Ok, I have posted that I went in for an upper endoscopy because my primary care and my GI thought I had an ulcer. Biopsy results come back, call from GI two weeks ago, you have celiac please schedule an appointment for follow-up and discussion of options. Went on gluten-free diet, thank you all for the help and suggestions.

Yesterday, I went in for the follow-up. I really need some sort of explaination here because this is the confusing part. I was told there is NO damage to the villi, that some sort of enzyme testing done on the biopsy revealed that I may have sprue. GI wants me to go back on a gluten diet for a week and then get blood work.

Now here is the question, what does this mean that I came up positive on this test but no damage to villi? I was under the impression this is something that is more a yes or no if the biopsy results reflect sprue or is there some way that test results show it but I do not have it?

Don't you just love it when the drs. backpedal? The real question is - How are you feeling on the gluten-free diet? Is your stomach better? Head, fatigue issues, outlook on life in general better? I was dx's w/o biopsy, but I know I have celiac from all the symptoms I get when I ingest gluten. Only you have direct access to what your body is telling you - listen to it.

Annette

[Jean-Luc]

I really never had problems, so to speak until I went gluten-free. That is to say, I am superactive ... dad to a 2 year old, have a great wife who likes to keep me busy, referee and coach rugby (with related fitness requirements), and of course, I work in a high stress job at times, but I throughly enjoy it.

My only symptoms - loose stool, gas and a prolonged rash on my upper buttocks. I have noticed since going gluten-free, those issues have resolved (rash is going away slowly - but it has come and gone for 2 years now). also, after posting a question about male fertility, well that may also be affected.

But after reading this site and others, I expressed my deep concern with the GI (my mother passed away from lupus and fibromyalga (sp?) and I have a long family hx of diabetes). So, the GI is really understanding and wants to make sure by the blood work.

I really thought that it was the other way around, blood work, then confirmation by biopsy. But in this case, the biopsy then blood work. Hence my confusion.

[nettiebeads]

I can see why you're confused, but the biopsy isn't the gold standard that it was thought to be. It sounds very much like you do have celiac, but since you've been gluten-free for two weeks, you'd have to go back on gluten for 6 weeks or more to have accurate test results. Your choice. But if the D has cleared up along with what is probably DH, then I'd opt for the gluten-free diet and let it go at that.

[Jean-Luc]

I cannot say I was 100% gluten-free, I really was just starting to figure out what I could and could not eat. I would say I avoided gluten as much as possible, but I was also on vacation and cannot vouch for all the foods (bangers and mash with onion gravy a couple of times and some sourdough bread one day )

But no beer, pasta, or cereals. In fact, I barely ate for the first four days, I really had no clue.

He thinks one week should be good since I was not 100% gluten-free.

[tiffjake]

Now here is the question, what does this mean that I came up positive on this test but no damage to villi? I was under the impression this is something that is more a yes or no if the biopsy results reflect sprue or is there some way that test results show it but I do not have it?

Here is a little food for thought. When I got my EnteroLab results (the genes) I looked up the info on their site. There is a "celiac gene" that means (check mark) YOU HAVE CELIAC DISEASE. But there are other genes that mean things like YOU ARE GLUTEN INTOLERENT or YOU ARE GLUTEN SENSITIVE even though we think that all three might be the same things. ACCORDING TO THEM, there is the gene that means YES and another that looks like YES, and acts like YES, but is not the same.... I have one gene for gluten intolerence, and then another that LOOKS AND ACTS like the celiac gene, but does not cause the intestinal damage....I will quote the EnteroLab.com site, but not the whole Gene part, because it is long. You can see the whole think at the site

From EnteroLab site:

Thus, HLA-DQ3 subtype 8 (one of the main celiac genes) acts almost identically in the body as HLA-DQ3 subtype 7, 9, or other DQ3 sub-subtypes. Having said all this, it should be reiterated that gluten sensitivity underlies the development of celiac sprue. In this regard, it seems that in having DQ2 or DQ3 subtype 8 (or simply DQ8) are the two main HLA-DQ genes that account for the villous atrophy accompanying gluten sensitivity (in America, 90% of celiacs have DQ2 [a more Northern European Caucasian gene], and 9% have DQ8 [a more southern European/Mediterranean Caucasian gene], with only 1% or less usually having DQ1 or DQ3). However, it seems for gluten sensitivity to result in celiac sprue (i.e., result in villous atrophy of small intestine), it requires at least 2 other genes also. Thus, not everyone with DQ2 or DQ8 get the villous atrophy of celiac disease. However, my hypothesis is that everyone with these genes will present gluten to the immune system for reaction, i.e., will be gluten sensitive. My and other published research has shown that DQ1 and DQ3 also predispose to gluten sensitivity, and certain gluten-related diseases (microscopic colitis for DQ1,3 in my research and gluten ataxia for DQ1 by another researcher). And according to my more recent research, when DQ1,1 or DQ3,3 are present together, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease).

Just an idea for ya. You might be very sick, and it not show up on the biopsy.

[Guest nini]

don'tcha just love dr's...

I can certainly understand your confusion. You can go ahead and have the blood work done but keep in mind that even if it comes back negative or borderline, it really doesn't mean anything.

you say that you weren't sick, BUT, there were some symptoms that led you to see a GI in the first place (thinking you had an ulcer) and you mention this rash and other things... It just may be that you are in the beginning stages of Celiac or just gluten intolerant which made your biopsy results confusing. What on earth made them suspect it in the first place and for him to then backpedal? This doesn't make sense to me.

If you do go back to eating gluten and get the bloodwork done, MAKE SURE they do the complete Celiac Panel

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

and make sure they send it to a lab that is experienced with reading these tests... Yes even a week gluten free may affect your test results, but I doubt by that much... Even so, keep in mind that even if you are Celiac or gluten intolerant it may not show up on the test.

Your most reliable test is How does your body react to the gluten free diet? Give yourself a good 3 to 6 months on the diet and then reintroduce gluten if you don't want to go through more testing... But you have to be 100% gluten free all the time, no cheating, NO SOURDOUGH BREAD, or it doesn't work.

[Jean-Luc]

I went out for lunch one day about a month ago and about an hour afterward I had severe stomach cramps and pain in my upper abs. I previously had food poisoning so I just thought it was that, but I did not feel good for several days and called the Dr. He had me come in and then referred me to a GI. Based upon my symptoms and line of work, the Drs. thought I had the ulcer and to rule it out they wanted the biopsy.

I have given the GI a call and will get the biopsy results faxed to me.

As for cheating, I know I have read enough on this board to realize it is a no no.

[Jean-Luc]

Here is the wording from the biopsy:

Benign Duodenal Mucosa with increases lymphocytes in surface epithellium, no active duodenitis seen, villous blunting not identified (see note 1).

Other reuslts showed benign gastic and colonic mucusa.

Note 1: CD3 immunohistochemistry shows mild to moderate increase of lymphocytes into surface epithelium, suggesting early changes of sprue. Please correlate clinically.

Note from Dr. to assistant, attached ... "biopsy's from proximal small intestine were suggestive of celiac sprue." Please schedule f/u.

The whole thing is interesting and confusing. Fun, fun, fun.

[nettiebeads]

Here is the wording from the biopsy:

Benign Duodenal Mucosa with increases lymphocytes in surface epithellium, no active duodenitis seen, villous blunting not identified (see note 1).

Other reuslts showed benign gastic and colonic mucusa.

Note 1: CD3 immunohistochemistry shows mild to moderate increase of lymphocytes into surface epithelium, suggesting early changes of sprue. Please correlate clinically.

Note from Dr. to assistant, attached ... "biopsy's from proximal small intestine were suggestive of celiac sprue." Please schedule f/u.

The whole thing is interesting and confusing. Fun, fun, fun.

Sounds like they caught it at the early early stages of damage. I would rule celiac in. But I'm not a professional dr, just been learning about this disease for the past 9 years.

[Jean-Luc]

Thank you. I can really understand how celiac disease can affect and effect lifestyle. It appears to manifest at random times in a person's life. Depending on when diagnosed, it appears to have the greatest impact on your overall health. I guess I am VERY lucky that it was been found this early.

So, once I get the blood work done and back I would imagine going gluten-free. Especially to head off other complications.

[nettiebeads]

But please remember false negatives are common. Just in case it comes back neg. If it comes back pos,

well, then you have no more questions. But like Nini stated - it's how your body feels being gluten-free that's the best indicator of celiac or not.

[Jean-Luc]

More confusion with bloodwork results:

Anti-Gliadin (AGA) IgA = 3 U/ml

Anti-Gliadin (AGA) IgG = not done

Anti-Endomysial (EMA) IgA - not done

Anti-Tissue Transglutaminase (tTG) IgA = <3 U/ml

Total Serum IgA = 174 mg/dL

someone, anyone comments????

[Guest nini]

More confusion with bloodwork results:

Anti-Gliadin (AGA) IgA = 3 U/ml

Anti-Gliadin (AGA) IgG = not done

Anti-Endomysial (EMA) IgA - not done

Anti-Tissue Transglutaminase (tTG) IgA = <3 U/ml

Total Serum IgA = 174 mg/dL

someone, anyone comments????

It looks like you do have some elevated results there with the Total Serum(where are the ranges?)... however, since the EMA was not done and the IgG was not done, you do not have the full picture.

you could be IgA deficient which could cause the negative IgA result, but without the EMA you really can't tell if that's the case.

With your elevated total serum if that is correct, I would say that yes you have Celiac, but you are one of the very fortunate ones to be diagnosed early before you have developed serious complications.

Ultimately though the best answer is how you respond to the gluten-free diet. Not these incomplete test results.

[Jean-Luc]

Well I went back on a standard diet for the past three months and a had second biopsy on Tuesday. fun, fun, fun.

What I found odd was when I asked the doc about bloodwork he told me to wait until the biopsy results came in. If the second biopsy reflects the same changes to the villi, when then no need for blood work and to start a gluten free diet.

This whole process is very strange. But I just thought I would update everyone.

[loraleena]

Any symptoms return on the regular diet. Biopsies are very inconclusive, since they may biopsy a piece that isn't damaged, or maybe the damage hasn't occured yet. You could get a stool test done by Enterolabs. That will at least tell you if you are gluten intolerant. That means you still would be on a gluten free diet. This is how I found out. Good Luck!

[Jean-Luc]

I never noticed a major change while gluten free. I would say I was only somewhat gluten free for two weeks before I was told to go back to regular diet.

So, I will wait and see. The Doc did tell me he took multiple samples. Maybe this will help.

[Jean-Luc]

Update, more bloody confusion!

New biopsy results: Benign Duodenal Mucosa with Mild Nonspecfic Chronic Inflammation and Associated Mild Atrophy. A celiac disease# Immunoperoxidase Stain for Increased Intraepithelial Lymphomcytes Found in Sprue is Negative.

Now onto more bloodwork, the Dr. does not seem to trust the results from the second biopsy. This time, I referred him toe the Celiac Foundation for more info on the right tests.

Fun, fun, fun .....

[penguin]

Your doctor is a nitwit. Villous atrophy is Celiac. Stay gluten-free and screw 'em.

[Jean-Luc]

Your doctor is a nitwit. Villous atrophy is Celiac. Stay gluten-free and screw 'em.

Not sure if he is a nitwit or just trying to save my arse. The implications on health insurance are huge, should I have celiac, I would have a diease that must be reported anytime I change coverage. This in turn could force me into higher premiums, additional riders and possible denial of coverage.

[penguin]

Not sure if he is a nitwit or just trying to save my arse. The implications on health insurance are huge, should I have celiac, I would have a diease that must be reported anytime I change coverage. This in turn could force me into higher premiums, additional riders and possible denial of coverage.

That is true, and whether or not he writes it down on paper, you're a celiac.

I'm doing that same testing thing now, actually. My PCP dx'ed me celiac without an endoscopy and only on dietary response and IgG elevation. I don't want that on my record unless they've done all the testing on me that they could to confirm it!

[Jean-Luc]

That is true, and whether or not he writes it down on paper, you're a celiac.

I'm doing that same testing thing now, actually. My PCP dx'ed me celiac without an endoscopy and only on dietary response and IgG elevation. I don't want that on my record unless they've done all the testing on me that they could to confirm it!

From everything I have read and the information obtained from this board, we both appear to have a similiar problem. If you want to find out for sure you have to be on a "normal" diet with all of the associated problems.

[Jean-Luc]

Well here we go again. Anyone know of a Dr in CT, NYC or Boston for a second opinion.

More confusion with bloodwork results:

Chemistry -General:

IgA 186 ref range 68-378 mg/dL

IgG 878 ref range 694-1618 mg/dL

Reference Lab Studies:

Gliadin (IgA) <3 ref <11 u/ml

Gliadin (IgG) <3 ref <11 u/ml

TT IgA <3 ref [note] u/ml

TT IgG <3 ref <7 u/ml

Endomysial IgA negative Ref [negative]

Total IgE <2 ref [114 or less] ku/l - note: result is below the senistivity limit of the anaylsis.

Bloody crazy results over all.