My History And Symptoms, Lots Of Questions, Few Answers

[sd 453]

Hello,

I ran across this website and am hoping that you guys may be able to point me in the direction of what questions I should be asking my doctor and what to do from here.

Here is a brief history, I have had problems with my stomach for about 15 years now (started mid teens) and was given a diagnosis of IBS without any testing ever being done. My symptoms for years included diarrhea, switching back and forth with constipation, pain, bloating. I have been to dieticians specializing in IBS and have removed most trigger foods from my diet at various times to try and identify triggers with no success. I had resigned to living with these symptoms, always knowing where a bathroom was and living in yoga pants for comfort.

In the last year, my symptoms have intensified and I began to push for most investigations. I began having more diarrhea, steatorrhea (which I had previously assumed may be associated with my gall bladder removal in 2008)constant bloating, and constant fatigue. I also seemed to have developed a problem digesting milk products although I was fine before this year. I have had iron deficiency anemia several times over the past few years and originally thought the fatigue may be related to this.

As far as testing goes, I was sent for blood work (normal, except for an increased level of inflammatory markers) and was told the usual "celiac" blood test was negative. I had a colonoscopy (normal), barium swallow and follow through (normal).

When I decided a few weeks ago to try a gluten free diet as a last ditch effort, I immediately noticed that I felt better than I had in years within about 5 days. I had more energy, my intestinal symptoms disappeared, and didn't even realize how sore all of my joints and bones had even been until they stopped hurting! I am convinced that something here is related to gluten and want to find out more. I am tired of being told I "just" have IBS and this is all in my head.

Can anyone tell me what I might want to talk to my doctors about next?

Thanks in advance for reading this long, long post!

[rosetapper23]

This is just my personal opinion--drop the doctors and continue to eat gluten free (and dairy free if it helps you). It appears that you may have identified the principal culprit that is causing your symptoms. It doesn't matter if your condition has a name or not--you know now that you can't tolerate gluten. The doctors will continue to do tests and give you the runaround when, in your heart, you KNOW what you need to do.

Many of us here found answers on our own with little or no help from doctors. If you want to be well, listen to your body.

[eatmeat4good]

I agree completely with the previous poster.

However;

Please use your Dr. to your benefit and don't let them give you the runaround by taking control of your care and ask specifically for what you want. Like vitamin levels to determine malabsorption and a bone scan to check your bones. Also thyroid levels can be helpful as many Celiacs have thyroid problems too.

If gluten is the problem and you feel better off of it-Great! Keep going!

The Dr. can be useful to check your vitamin levels as malabsorption/Celiac will cause vitamin deficiencies in B vitamins, D, K, iron, and several others--

Good luck.

[mushroom]

Before I read rosetapper23's response, my first thought was, these darned doctors, they are supposed to be the ones diagnosing and they keep sending us on our way with these BS (or IBS ) diagnoses, Sadly to say, most of us end up not talking to our doctors and just knowing what we have to do - stop eating gluten. For most doctors, if you are not celiac positive you do not have a problem with gluten --- DEAD WRONG, not literally, but maybe in the end could be. Because celiac diseae is NOT the end of gluten intolerance, and negative testing is not the end of gluten intolerlance; and what doctors know is not the end of gluten intolerance (because, unfortunately, they know less than most gluten intolerant patients). Lactose and iron deficiency anemia are both common in gluten intolerants, many undiagnosed intolerants have had their gall bladders removed in an attempt to alleviate their symptoms, and faaigue and aching joints are pretty much a given..

So unless you can find a doctor who is celiac literate (from your local celiac society perhaps, or a celiac support group, you are not going to get a lot of help from most doctors. You have two options: to continue your pursuit ot someone who knows something about non-celiac gluten intolerance, or do your own reading on the subject, accept the fact that gluten is probably causing your problems, stop eating gluten, and eat and live happily thereafter

[sd 453]

Thanks for your posts, I appreciate hearing from the perspective of those who have already been through all this! I guess I just need to embrace and figure out a new way of eating. I think I will try and track down a doctor in my area with some experience in celiac and non-celiac gluten intolerances.

[gf-soph]

Firstly, you sound like a classic case of celiac/gluten intolerance, and with your dietary response I think you have a very firm answer that you may have found the root of this problem. Well done!! Also, a lot of people here have a strong opinion about IBS, and the kindest is that it is meaningless for the majority of people, far more of a description than a diagnosis.

I think give your drs a chance (and i don't often say that). They have done some reasonable testing (at least recently), as well as including celiac markers. Have you spoken to them about non-celiac gluten intolerance, or a false negative on the blood test? They clearly don't know enough to suggest the gluten-free diet themselves, but they may be open to your improvements. It can't hurt to let them know about your improvements, and see if they are willing to order the secondary testing for vitamin deficiencies, thyroid function, bone density etc that an earlier poster mentioned.

It may be that they rubbish you and you have to do it alone, but there's a small chance they may be open to it, and you could have them on your side in the recovery phase.

Hello,

I ran across this website and am hoping that you guys may be able to point me in the direction of what questions I should be asking my doctor and what to do from here.

Here is a brief history, I have had problems with my stomach for about 15 years now (started mid teens) and was given a diagnosis of IBS without any testing ever being done. My symptoms for years included diarrhea, switching back and forth with constipation, pain, bloating. I have been to dieticians specializing in IBS and have removed most trigger foods from my diet at various times to try and identify triggers with no success. I had resigned to living with these symptoms, always knowing where a bathroom was and living in yoga pants for comfort.

In the last year, my symptoms have intensified and I began to push for most investigations. I began having more diarrhea, steatorrhea (which I had previously assumed may be associated with my gall bladder removal in 2008)constant bloating, and constant fatigue. I also seemed to have developed a problem digesting milk products although I was fine before this year. I have had iron deficiency anemia several times over the past few years and originally thought the fatigue may be related to this.

As far as testing goes, I was sent for blood work (normal, except for an increased level of inflammatory markers) and was told the usual "celiac" blood test was negative. I had a colonoscopy (normal), barium swallow and follow through (normal).

When I decided a few weeks ago to try a gluten free diet as a last ditch effort, I immediately noticed that I felt better than I had in years within about 5 days. I had more energy, my intestinal symptoms disappeared, and didn't even realize how sore all of my joints and bones had even been until they stopped hurting! I am convinced that something here is related to gluten and want to find out more. I am tired of being told I "just" have IBS and this is all in my head.

Can anyone tell me what I might want to talk to my doctors about next?

Thanks in advance for reading this long, long post!