Diagnosis Conundrum

[fijiwiji]

Hi,

I started suspecting celiac several months ago because of severe gastrointestinal symptoms (alternating constipation/diarrhea, constant bloating, and nausea), as well as general fatigue and occasional migraines. I was desperate for a solution, so I cut out gluten while waiting to get an appointment with a gastroenterologist. I felt much better on a gluten-free diet, and for the first time in a long time, my poop was normal-shaped and easily passed.

At my gastro appt (a month after going gluten-free - the soonest appointment I could get) - the doctor informed me that the antibody test for celiac would likely not be a reliable given my gluten-free diet, but recommended a genetic test in order to rule-out celiac. I am of Northern Irish direct ancestry (parents are from Belfast) so he definitely felt that given my symptoms and heritage, the odds were good that this was what was causing my symptoms.

I went through with the genetic test and he informed me I have one of the genes for celiac. He recommended I schedule an endoscopy ASAP. In the meantime, I asked him whether I should continue eating gluten-free and he said yes. So, I did - until I was speaking with a medical student friend of mine who told me that he was fairly certain the endoscopy would be inconclusive if I did have celiac, given my 2-month gluten-free diet by the time of the test. So, this prompted me to call my doctor and inquire again as to whether or not I should be eating gluten given the upcoming endoscopy. Doctor said to go ahead and start eating gluten again (this was one week ago from today. My endoscopy is this coming Monday). Excited at the 'go-ahead' to eat gluten again, I went nuts - I had no idea that this might be a bad idea. I ate two bagels, a muffin, and a full pasta dinner within the span of 24 hours. (ate first gluten on a Wednesday night- and felt no immediate consequences. continued to eat gluten through the day on Thursday). Then, on Friday morning, I was vomiting and had the worst diarrhea of my life - simultaneously! I also had severe bloating and general nausea - my gag reflex was constantly triggered to the point where I felt I could throw up at any moment.

I felt better after vomiting, but then the next day - Saturday - I had the same exact thing (vomiting and diarrhea) while out running errands. Then, since then, I've felt nauseous and sleepy/highly out of it during the day despite getting 8 hours of rest. And, my bowel movements have become highly frequent and small and very difficult to pass- almost like rabbit droppings in size/shape. (sorry for the immense detail)

At the height of the vomiting/diarrhea on Friday, i called my doctor and asked for advice-- he said to stop eating gluten, yet to still come in this coming Monday for the endoscopy.

I don't know what to think about any of this. On the one hand, I almost feel like the endoscopy is pointless at this point given the immense reaction I think I had to eating so much gluten. I think i will feel frustrated by not having a conclusive result, given that (from what I have researched) it really doesn't sound like they will find anything given my gluten-free diet.

On the other hand, my reaction was not immediate to gluten- I had first eaten gluten on Wednesday night but did not have the vomiting and diarrhea until Friday.

I am not sure what specific advice I seek, other than general counsel on my situation and whether it's possible for my reaction to gluten to not be immediate. Also, does it even make sense to go through with the endoscopy at this point? Was my doctor delusional to even tell me to go through with it?

Thanks all.

[ravenwoodglass]

It is not uncommon for the reaction to be delayed. For me it is three days before symptoms show up. You clearly are reacting to gluten. Whether your biopsy will be positive or not I don't know. Your doctor may give you a diagnosis based on your reaction to the gluten challenge even if the biopsy is not conclusive. I hope you are feeling better soon and you have learned that your body definately does not want gluten no matter what the tests say.

[krystynycole]

It is quite possible to have a delayed reaction to the gluten. I know when I get glutened my worst symptoms come in the following 24-48 hours.

Whether you want to go through with it is up to you. I do not need a test to tell me I can't have gluten. If it makes me feel so much better it's worth it no matter what the test results say. However, some people need to have a test result for them selves personally or for family members. So I guess getting tested is a personal decision

[pain*in*my*gut]

  On 8/20/2011 at 3:56 AM, fijiwiji said:

Hi,

I started suspecting celiac several months ago because of severe gastrointestinal symptoms (alternating constipation/diarrhea, constant bloating, and nausea), as well as general fatigue and occasional migraines. I was desperate for a solution, so I cut out gluten while waiting to get an appointment with a gastroenterologist. I felt much better on a gluten-free diet, and for the first time in a long time, my poop was normal-shaped and easily passed.

At my gastro appt (a month after going gluten-free - the soonest appointment I could get) - the doctor informed me that the antibody test for celiac would likely not be a reliable given my gluten-free diet, but recommended a genetic test in order to rule-out celiac. I am of Northern Irish direct ancestry (parents are from Belfast) so he definitely felt that given my symptoms and heritage, the odds were good that this was what was causing my symptoms.

I went through with the genetic test and he informed me I have one of the genes for celiac. He recommended I schedule an endoscopy ASAP. In the meantime, I asked him whether I should continue eating gluten-free and he said yes. So, I did - until I was speaking with a medical student friend of mine who told me that he was fairly certain the endoscopy would be inconclusive if I did have celiac, given my 2-month gluten-free diet by the time of the test. So, this prompted me to call my doctor and inquire again as to whether or not I should be eating gluten given the upcoming endoscopy. Doctor said to go ahead and start eating gluten again (this was one week ago from today. My endoscopy is this coming Monday). Excited at the 'go-ahead' to eat gluten again, I went nuts - I had no idea that this might be a bad idea. I ate two bagels, a muffin, and a full pasta dinner within the span of 24 hours. (ate first gluten on a Wednesday night- and felt no immediate consequences. continued to eat gluten through the day on Thursday). Then, on Friday morning, I was vomiting and had the worst diarrhea of my life - simultaneously! I also had severe bloating and general nausea - my gag reflex was constantly triggered to the point where I felt I could throw up at any moment.

I felt better after vomiting, but then the next day - Saturday - I had the same exact thing (vomiting and diarrhea) while out running errands. Then, since then, I've felt nauseous and sleepy/highly out of it during the day despite getting 8 hours of rest. And, my bowel movements have become highly frequent and small and very difficult to pass- almost like rabbit droppings in size/shape. (sorry for the immense detail)

At the height of the vomiting/diarrhea on Friday, i called my doctor and asked for advice-- he said to stop eating gluten, yet to still come in this coming Monday for the endoscopy.

I don't know what to think about any of this. On the one hand, I almost feel like the endoscopy is pointless at this point given the immense reaction I think I had to eating so much gluten. I think i will feel frustrated by not having a conclusive result, given that (from what I have researched) it really doesn't sound like they will find anything given my gluten-free diet.

On the other hand, my reaction was not immediate to gluten- I had first eaten gluten on Wednesday night but did not have the vomiting and diarrhea until Friday.

I am not sure what specific advice I seek, other than general counsel on my situation and whether it's possible for my reaction to gluten to not be immediate. Also, does it even make sense to go through with the endoscopy at this point? Was my doctor delusional to even tell me to go through with it?

Thanks all.

Your doc should have known that you needed to continue on gluten until your biopsy. When you go gluten free, your gut starts to heal because your body is not attacking itself anymore. It can heal in as little as 2 weeks, or as long as 2 years, depending on the damage. So, even though you have been on a gluten bender for a week, your gut may not have enough re-damage to yield a positive biopsy.

I guess if it were me, I would go ahead and have the scope, if for nothing else than to potentially rule out other stuff like ulcers. Given the severity of your symptoms when you eat gluten, I would assume that you had Celiac even if the scope is negative. If you feel that you NEED a doc to say "Yes, you have Celiac", then you will have to do a proper gluten challenge, which means eating gluten and torturing yourself for 3-6 months.

As for the delayed response to gluten, absolutely it is possible! I have found that my reactions to gluten vary from 1 hour to 2-3 days. There is no set rule on when or how the body reacts.

Sorry you are going thru this. Your situation is exactly why I have lost trust in the medical community regarding Celiac disease. It's hard to find a doc who knows what the he!! they are doing.

Good luck to you! Keep us posted!