Help Please, Please, On Biopsy Prep

[Ivy]

Please can anyone tell me any information regarding the need for a gluten challenge with a biopsy?

I'm in my 50's and without too long a story, I saw a new GI Dr. who decided to biopsy test for Celiac during an endoscopy. The results came back and he told me I don't have Celiac. I have been gluten-free over 3 years. Does anyone have any information about the accuracy of this without a gluten challenge?

[psawyer]

An endoscopy of a person who is following the gluten-free diet should show no abnormalities. Celiac disease will only present villous atrophy if the subject is eating gluten in quantity on a frequent basis.

[K-Dawg]

Hi Ivy

I am a newbie at this stuff, but my liver specialist advised me in April 2009 that the results of a biopsy of my small intestine during an endoscopy would not be reliable wrt a celiac diagnosis UNLESS I was ingesting gluten.

I believe this is probably because if you are not eating gluten then there will be no tell-tale damage to the villi. Anyone want to confirm?

A friend of mine went gluten free on her own initiative...then had to eat gluten for a period of time (can't recall how long) before her endoscopy.

In sum, if he wants to know if you have celiac when doing an endoscopy he would have needed you to be eating gluten.

KDAWG

Please can anyone tell me any information regarding the need for a gluten challenge with a biopsy?

I'm in my 50's and without too long a story, I saw a new GI Dr. who decided to biopsy test for Celiac during an endoscopy. The results came back and he told me I don't have Celiac. I have been gluten-free over 3 years. Does anyone have any information about the accuracy of this without a gluten challenge?

[Ivy]

Thank you both so much. I thought I was going to loose my mind today when his nurse called and said, "your biopsy results are back and you don't have Celiac. But if it makes you feel better you can continue on the gluten-free diet. It frequently helps with IBS" I said, "But I've been gluten-free 3 years." She said, "It doesn't matter with the biopsy."

I didn't even know the Celiac was in question or that he'd be testing for it. I don't have and never have had IBS symptoms. It's a long story as to how I was originally dx'ed. Silly me, I figured testing positive on the genetic, my medical history and having both my kids test positive with flying colors on the antibody and genetic tests was sufficient.

Does anyone have any "expert" information anywhere I could print out to take to him and challenge him? I really don't need a wrong dx on my med record right now and his "findings" do nothing to help figure out what's wrong with me right now.

[pewpewlasers]

If you have to, see another doctor. They should know you need to be eating gluten in order to see damage from having celiac disease. They shouldn't completely rule it out because of the results of your endoscopy after being gluten free for three years.

I just saw a new GI and I am having my endoscopy this upcoming Tuesday. However, I have been gluten free for over a year now. He said he doesn't want to torture me and do a gluten challenge. He wants to see if there is damage or anything else since I am having problems unreleated to my celiac lately. If it comes back normal he said we will probably do a gluten challenge. At least he understands you need to be eating gluten!

I'm sorry, but if your new GI can't understand that you need to be eating gluten to see damage, he/she is a retard and you need another doctor.

[GottaSki]

I'm not clear...was it your Doctor or only his nurse that made the statements about not having Celiac based on the biopsy performed on you while you are 3 years gluten-free?

If it was only the nurse, ask to speak directly to the doctor.

If it was the doctor, he knows nothing about celiac - my understanding is that a gluten challenge must be for at least a month prior to the biopsy and I'm not sure how reliable they are with three years healing under your belt -- best bet find another doctor!

[K-Dawg]

GottaSki makes a good point -- if it was the nurse or the receptionist who provided you with misinformation, it may just be that s/he relayed the information incorrectly. Perhaps it is worth following up with the physician directly

[Ivy]

GottaSki makes a good point -- if it was the nurse or the receptionist who provided you with misinformation, it may just be that s/he relayed the information incorrectly. Perhaps it is worth following up with the physician directly

Thanks for all the input. What the nurse said was my results were back, that the doctor said that I don't have Celiac but that I could continue on the gluten-free diet if it makes me feel better because it frequently helps with IBS. (I didn't know I had IBS. Don't have symptoms of IBS.) I said but I've been gluten free 3 years - are you sure that doesn't affect test results. And she said "That doesn't make any difference with this test." I tried to ask some other questions and she said I could talk to him at my check back in 3 weeks. This ought to be good...I don't even know how to approach this. I went in because I think I've been on protonix too long and it's making me feel ulcery. He said it was probably lactose intolerance? I know people with lactose intolerance, I haven't had those symptoms. What troubles me is I think my new general Dr. doesn't believe the Celiac and requested a confirmation when he referred me to the GI Dr.

I started 4 years ago with a different idiot doctor who sent me to a surgeon for a endoscopy. By the time I got into the surgeon, I had begun wondering about celiac. I asked and he said it wasn't possible because I didn't have "greasy grey floating stools." He refused to test for it. Ok, so I get back to my regular doc and he says ...you can try going gluten free and see. Yes, now I know how wrong that was. For the first time in years I wasn't going to bed with a rock in my gut, I could control my weight, I only had "output" once or twice a day like regular people, the rash around my mouth that I had to put cortisone on daily disappeared, my back quit itching, my ulcer medicine seemed to magically work again and I didn't need the Reglan he told me I needed to take indefinitely, and it even explained the early onset of horrible osteoporosis. I go back to my Dr., hadn't been in awhile and he can't believe the changes in me. He decides "we need confirmation of this" and orders the antibody tests. I took him in information from Columbia U Center for Celiac showing an antibody test won't show anything on someone who's been gluten-free a year, and so he did the genetic. It came back positive. So I had my kids who are young adults tested. Both kids hit across the board on the antibody and genetic. Their doctors said a biopsy wasn't even necessary, there was no doubt. But I guess I'm self diagnosed.

Anyway, for other reasons I ended up with a new Dr. who apparently didn't accept the celiac dx either because I didn't even know the GI Dr. was testing for celiac when he did the biopsy. I'm a woman in her 50's on protonix so I guess it must be IBS, right? I'm so frustrated.

I will go in to get the results of whatever else he did, but this ought to be good. The lactose elimination he had me doing made things worse...do I expect him to believe that... I did call the office and request a copy of the tests. I don't know how or where to find a better doctor.

[ravenwoodglass]

Thanks for all the input. What the nurse said was my results were back, that the doctor said that I don't have Celiac but that I could continue on the gluten-free diet if it makes me feel better because it frequently helps with IBS. (I didn't know I had IBS. Don't have symptoms of IBS.) I said but I've been gluten free 3 years - are you sure that doesn't affect test results. And she said "That doesn't make any difference with this test." I tried to ask some other questions and she said I could talk to him at my check back in 3 weeks. This ought to be good...I don't even know how to approach this. I went in because I think I've been on protonix too long and it's making me feel ulcery. He said it was probably lactose intolerance? I know people with lactose intolerance, I haven't had those symptoms. What troubles me is I think my new general Dr. doesn't believe the Celiac and requested a confirmation when he referred me to the GI Dr.

I started 4 years ago with a different idiot doctor who sent me to a surgeon for a endoscopy. By the time I got into the surgeon, I had begun wondering about celiac. I asked and he said it wasn't possible because I didn't have "greasy grey floating stools." He refused to test for it. Ok, so I get back to my regular doc and he says ...you can try going gluten free and see. Yes, now I know how wrong that was. For the first time in years I wasn't going to bed with a rock in my gut, I could control my weight, I only had "output" once or twice a day like regular people, the rash around my mouth that I had to put cortisone on daily disappeared, my back quit itching, my ulcer medicine seemed to magically work again and I didn't need the Reglan he told me I needed to take indefinitely, and it even explained the early onset of horrible osteoporosis. I go back to my Dr., hadn't been in awhile and he can't believe the changes in me. He decides "we need confirmation of this" and orders the antibody tests. I took him in information from Columbia U Center for Celiac showing an antibody test won't show anything on someone who's been gluten-free a year, and so he did the genetic. It came back positive. So I had my kids who are young adults tested. Both kids hit across the board on the antibody and genetic. Their doctors said a biopsy wasn't even necessary, there was no doubt. But I guess I'm self diagnosed.

Anyway, for other reasons I ended up with a new Dr. who apparently didn't accept the celiac dx either because I didn't even know the GI Dr. was testing for celiac when he did the biopsy. I'm a woman in her 50's on protonix so I guess it must be IBS, right? I'm so frustrated.

I will go in to get the results of whatever else he did, but this ought to be good. The lactose elimination he had me doing made things worse...do I expect him to believe that... I did call the office and request a copy of the tests. I don't know how or where to find a better doctor.

Protinix is for GERD, are you still having acid reflux or stomach pain? If they didn't find any evidence of ulcers or GERD your doctor should have no issues with you stopping it. Here is a bit of info on it from the makers website

Important Product and Safety Information

Indications

PROTONIX is a prescription drug that is used to treat and maintain healing of erosive acid reflux disease, also known as erosive GERD (breaks in the lining of the esophagus), and relieve associated symptoms that may include frequent and persistent heartburn and stomach acid backup. Most patients heal within 8 weeks of treatment. Doctors may prescribe PROTONIX beyond 8 weeks to maintain healing or to prevent a recurrence of your symptoms. Controlled studies did not extend beyond 12 months.

Important Safety Information

In clinical trials, the most frequently reported side effects with PROTONIX Delayed-Release Tablets were headache, diarrhea, and gas. Relief of your symptoms while on PROTONIX does not exclude the possibility that serious stomach conditions are present. Patients who are allergic to any ingredient of PROTONIX should not take it.

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As to diagnosis at this point you may just have to live with your body's diagnosis. I can't believe the number of doctors that feel they have to 'prove for themselves' another doctors diagnosis. After we have healed and been gluten-free for years it can take months to make us sick enough for them to see anything on those biopsies. There are times whem folks find it really hard to heal from the challenge and it seems to me that the 'do no harm' part of the hippocratic oath means nothing when it comes to doctors dealing with celiac patients. Since your children are firmly diagnosed and you have the genes and saw a great deal of improvement on the diet I would run, fast, from any doctor who demanded his own proof. Hopefully someday the US will adopt the mucous membrane form of testing which requires no challenge. But for now doctors here think the test is too sensitive, from what I have read, and diagnoses too many people. Your doctor saw the changes in your health and he was IMHO an idiot to want to make you sick just to prove what was already known.