Enteroscopy Biopsy

[Susie A]

Hi. I am new to this forum and appreciate the opportunity to communicate with other Celiacs. I have an enteroscopy scheduled to affirm Celiac since I've had two TTG labs that determined extremely high levels of transglutaminase and am Vit D deficient. I asked the doctor's staff if I could go ahead and discontinue the gluten now though the enteroscopy is scheduled for Oct 25th. The staff told me it was OK to discontinue gluten now, however I just located info on the internet that says otherwise.

To quote from Open Original Shared Link: "At this point, the patient goes to the doctor to tell them about their success and asks for the celiac test. The problem begins here if the doctor immediately runs the test. In order to receive an accurate celiac disease blood test or endoscopy (small bowel biopsy), a patient must be eating gluten for a considerable about of time to build up the antibodies that are measured on the test. If the patient is not eating gluten, the test will come back negative even if the person has celiac disease. Thus it is incredibly important to be on a full gluten-containing diet before the test".

My email is susiealverson@yahoo.com or you can respond here. Thank you so much.

[mushroom]

Hi. I am new to this forum and appreciate the opportunity to communicate with other Celiacs. I have an enteroscopy scheduled to affirm Celiac since I've had two TTG labs that determined extremely high levels of transglutaminase and am Vit D deficient. I asked the doctor's staff if I could go ahead and discontinue the gluten now though the enteroscopy is scheduled for Oct 25th. The staff told me it was OK to discontinue gluten now, however I just located info on the internet that says otherwise.

To quote from Open Original Shared Link: "At this point, the patient goes to the doctor to tell them about their success and asks for the celiac test. The problem begins here if the doctor immediately runs the test. In order to receive an accurate celiac disease blood test or endoscopy (small bowel biopsy), a patient must be eating gluten for a considerable about of time to build up the antibodies that are measured on the test. If the patient is not eating gluten, the test will come back negative even if the person has celiac disease. Thus it is incredibly important to be on a full gluten-containing diet before the test".

My email is susiealverson@yahoo.com or you can respond here. Thank you so much.

Hi, and welcome to the board.

Yes, it is always recommended that you keep eating gluten right up to the time of the endoscopy, otherwise sufficient healing may take place that the test will be negative. That being said, it is also possible to have positive bloodwork and negative biopsy because the damage in the small intestine can be patchy and so it is important that four or five samples be taken. Sometimes, of course, it is possible to see the damage with the naked eye through the scope if the damage is severe, but it is usually found with the microscope.

[laylamc]

What is the point of having the endoscopy? I have a positive blood test result already. My allergist recommended who is supposedly one of the best GI docs in the country to do my endoscopy, but he can't see me until February.

I feel so bad on gluten that I don't even WANT to eat it most of the time and certainly don't want to go off the diet until then.

Any suggestions?

[Dixiebell]

A lot of Dr.s wont diagnose based just on blood work. That would be solely up to you to not have the endoscopy done. Personally I don't think I could wait that long knowing that I already feel better on the diet.

[Roda]

If you want the scope and biopsy don't go gluten free until it is over.

[ravenwoodglass]

What is the point of having the endoscopy? I have a positive blood test result already. My allergist recommended who is supposedly one of the best GI docs in the country to do my endoscopy, but he can't see me until February.

I feel so bad on gluten that I don't even WANT to eat it most of the time and certainly don't want to go off the diet until then.

Any suggestions?

You could try a different GI doctor, just because one doctor likes to use another doesn't mean that no one else is good enough. You could also ask to be put on a cancellation list so if someone cancels at the last minute you could slide in. You also have the option of just going gluten free now. Some doctors will diagnose based on positive blood work and response from the diet. As stated you do have to be eating gluten for the biopsy to have the best chance of finding celiac but if you know gluten is harming you and can stay strict to the diet without one you don't need a doctors permission to eat gluten free.

[Emilushka]

I think it's useful to make sure you don't have any ulcers or other problems caused by Celiac. Since people with Celiac tend to develop bacterial overgrowth in the small intestine, it might be helpful to get some biopsies to attempt to quantify damage and see if there's anything major to be concerned about.

I'd go to a different GI doc to get the encoscopy sooner. Sometimes I think doctors forget that what matters to the patient is not feeling like crap. If you call up the GI department and ask who has the first endoscopy slot available, you could probably get in soonest that way.

[chasbari]

Yes, I stopped gluten before any testing.. I was dying. Yes I tested negative by bloodwork. Yes, the evidence was so overwhelming that my GP ordered an endoscopic biopsy anyway. Yes, the villous damage was so severe that I was positively diagnosed after being off gluten for more than six weeks. Yes, two and a half years later I, on my latest scope and biopsy have "damage consistent with celiac disease" in spite of being rigorously gluten free. I guess the idea that damage to the intestinal wall could heal that quickly seems like foolishness to me. Doctor, I think I am being poisoned to death. Doc's reply... "ok, well keep eating the poison until we determine if it is poisonous to you or not." Not intelligent in my mind. We are treating a serious disease at the level of inadequacy of the medical community instead of using our beans to do the correct thing and then desperately waiting for them to tell us what we already suspect and we're waiting on this from many in the medical community who don't get it yet. Formula for trouble. I was dying, I formed a hypothesis based on the evidence, I made a change and voila, I am slowly recovering, which is far better than dying. Yes, I am, perhaps, a bit extreme but that's what I think.

[Monklady123]

I've opted not to have the endoscopy for just the reason people have said. I am sick and miserable when I eat gluten, and I'm not when I don't. Simple as that. I don't need that official piece of paper that says "biopsy positive" or whatever it will say. All I care about is feeling well enough to live my life.

If my doctor still wants to do it to look for an ulcer, or something else, then fine. I don't need to eat gluten for that. But I'm not going back to eating gluten for all those weeks!

[Nadia2009]

Hi everyone,

I quit gluten late September 2009 and had been glutened a few times since then. In the spring and summer 2009, after my blood test came "unconclusive" he didn't judge necessary to refer me to a GI. I didn't persist asking because I had symptoms that were indicating some allergy issues and got busy seeing allergists at that time that reassured me I had almost no allergy to environment or food and should check food intolerances. I was confused because I had a lot sneezing and other typical allergy symptoms.

Now after all this time and maybe too late, my GP referred me to a GI finally. I asked him because I am concerned of having loose stools regularly.

Anyway, my question to you is if I still have diarhea when I get glutened and loose stools other times, is that a sign that my intestines are damaged? In the case of real celiac disease, I am thinking one year is too short for the vili to heal if there was major damage.

[laylamc]

Thanks for the insight.

I figured I will keep the appt to see if there is any damage. My allergist felt that if I was having symptoms of GERD/acid reflux several days per month, there is likely damage associated with the Celiac that is worth checking out.

The GI doctor I have an appointment with is supposedly the best in the country, and well worth the wait.

I am not going to stop eating gluten-free. I know I have it, from experience and from my positive blood work. The way I see it is that the GI doc will just tell me if there is damage, what to do about it.

BTW, I have had the GI appointment since August. Thats right - 6 month wait!