What Would You Do?

[coryjmclaughlin]

I am a 35 year old with Lupus that has had diahrea for 3 months now. It came on very suddenly and I have it every morning without fail about 2-3 times and then usually am OK the rest of the day. Sometimes if I eat during the day then I will get it again during the day. I had stool tests, blood tests and a colonscopy. They put me on meds for heartburn, Irritable Bowel Syndrome and e. Coli infection and all have done nothing for the diahrea. The colonoscopy was negative along with the stool samples. The blood tests were suggestive of Celiac's but on further bloodwork it came back negative. I'm at a complete loss of what this could be but am wondering if it is possible that there is some type of gluten problem that I should look at even without a doctor's orders. I also saw a naturopath who gave me stuff to try and said it was parasites but that didn't help either. I'm just so sick of being bloated and having diahrea constantly!!!!

[GlutenFreeManna]

I am a 35 year old with Lupus that has had diahrea for 3 months now. It came on very suddenly and I have it every morning without fail about 2-3 times and then usually am OK the rest of the day. Sometimes if I eat during the day then I will get it again during the day. I had stool tests, blood tests and a colonscopy. They put me on meds for heartburn, Irritable Bowel Syndrome and e. Coli infection and all have done nothing for the diahrea. The colonoscopy was negative along with the stool samples. The blood tests were suggestive of Celiac's but on further bloodwork it came back negative. I'm at a complete loss of what this could be but am wondering if it is possible that there is some type of gluten problem that I should look at even without a doctor's orders. I also saw a naturopath who gave me stuff to try and said it was parasites but that didn't help either. I'm just so sick of being bloated and having diahrea constantly!!!!

Welcome!

First, get a copy of the blood tests so you can find out exactly which ones they did and what they said. If you post them here some knowledgable people can help you interpret. Some drs do not interpret the results correctly becuase they are not very familiar with celiac disease. Second, if the first blood tests were indicative of celiac then they should have followed up with an endoscopy (not a colonscopy) and done at least 6 biopies of your intestines to test for villi dammage. IBS is not a diagnosis, it is a set of symptoms that drs tell you when they don't know what is causing your bowels to be irritable. Finally, keep eating gluten until all your testing (including the biopsy) is done. If you stopped gluten or cut back on it before the second blood test that may explain why it was negative. The minute you get your biopsy done you can try the gluten-free diet and see if it helps.

If your symptoms resolve gluten-free then you probably have celiac or non-celiac gluten intolerance regardless of what the tests end up saying. With your already having lupus there is a good chance you have celiac too since they are both autoimmune diseases. You of course always have the option of going gluten free without any more testing but that will make any future test false negative and prevent you from getting an offical diagnosis in your medical records. Some people don't want an offical diagnosis because they are afraid it will hurt them insurance-wise, some people know they won't stick to the gluten-free diet without it or want to be able to get a dr's note for situations requiring special food accomodations like school, traveling on planes, certain jobs, etc. Also some people want an offical diagnosis so their family will take it seriously and accept their need to eat gluten-free. Only you can decide which path you want to take.

[ElseB]

Have they tested for C.Difficile? It causes nasty diarhhea too.

[coryjmclaughlin]

They wouldnt do an endoscopy because they said it wasnt necessary!!!! I will try and get a copy of my blood tests though. I was tested for c. diff also.

Does it sound like celiacs?

[cahill]

I am a 35 year old with Lupus that has had diahrea for 3 months now. It came on very suddenly and I have it every morning without fail about 2-3 times and then usually am OK the rest of the day. Sometimes if I eat during the day then I will get it again during the day. I had stool tests, blood tests and a colonscopy. They put me on meds for heartburn, Irritable Bowel Syndrome and e. Coli infection and all have done nothing for the diahrea. The colonoscopy was negative along with the stool samples. The blood tests were suggestive of Celiac's but on further bloodwork it came back negative. I'm at a complete loss of what this could be but am wondering if it is possible that there is some type of gluten problem that I should look at even without a doctor's orders. I also saw a naturopath who gave me stuff to try and said it was parasites but that didn't help either. I'm just so sick of being bloated and having diahrea constantly!!!!

I first thing I would do is get a copy of the test results that were "suggestive of celiac's". If you feel comfortable post them here. we can help you interpret them.

I would rule out other possible causes such as parasites ,C.Difficile ect..

I would ask my GI doc to do an endoscopy ,taking biopsys for villi atrophy .

Then I would go gluten free for atleast 4 month to see if my diarrhea resolve . You do NOT need a doctors order to go gluten free, no prescription required

but that is me this is your choice to make

[GlutenFreeManna]

They wouldnt do an endoscopy because they said it wasnt necessary!!!! I will try and get a copy of my blood tests though. I was tested for c. diff also.

Does it sound like celiacs?

Yet they did a colonscopy? That doesn't make sense. I think your dr really doesn't know about celiac disease. Once you get a copy of the test results you might consider taking them to another dr that would be willing to do an endoscopy. Another dr that knows more might even diagnose you based on the blood test and a positive response to the diet, depending on what the tests say. More and more drs are doing that when the blood test come up positive because there is virtually no chance of a false positve and high chance of false negatives.

[eatmeat4good]

Lupus and Celiac often go together.

I have Celiac, my daughter has Lupus so we have been reading about it and suspect they are related.

Try gluten free if you can't get them to comply with your requests for testing.

[coryjmclaughlin]

He said because the second blood test came back negative there was no point in checking for Celiac's. He did the colonoscopy because of all of the diahrea but feels ulimately it is just IBS and that I am going to have to live with it but I just don't see why I should have to live with diahrea for the rest of my life. I'm supposed to be on the e.coli antibiotics for another week but am supposed to call him this week and let him know how I am doing but I don't think he is going to do anything since the antibiotics aren't doing anything. I already asked about switching my diet but he said it wouldn't do anything.

[sa1937]

He said because the second blood test came back negative there was no point in checking for Celiac's. He did the colonoscopy because of all of the diahrea but feels ulimately it is just IBS and that I am going to have to live with it but I just don't see why I should have to live with diahrea for the rest of my life. I'm supposed to be on the e.coli antibiotics for another week but am supposed to call him this week and let him know how I am doing but I don't think he is going to do anything since the antibiotics aren't doing anything. I already asked about switching my diet but he said it wouldn't do anything.

False negatives are not uncommon with celiac. If the dr. is going to do an endo/biopsy, obviously you need to keep eating gluten until that's done. But if he isn't going to do any more testing, you don't need his permission to give a gluten-free diet a good strict trial. You may find your own answer.

[cahill]

He said because the second blood test came back negative there was no point in checking for Celiac's. He did the colonoscopy because of all of the diahrea but feels ulimately it is just IBS and that I am going to have to live with it but I just don't see why I should have to live with diahrea for the rest of my life. I'm supposed to be on the e.coli antibiotics for another week but am supposed to call him this week and let him know how I am doing but I don't think he is going to do anything since the antibiotics aren't doing anything. I already asked about switching my diet but he said it wouldn't do anything.

Some Doctors are not very knowledgeable about celiacs and gluten intolerances

Once you rule out any other possibilities problems,try going gluten free. It wont hurt anything to go gluten free. It just may help.

[GlutenFreeManna]

He said because the second blood test came back negative there was no point in checking for Celiac's. He did the colonoscopy because of all of the diahrea but feels ulimately it is just IBS and that I am going to have to live with it but I just don't see why I should have to live with diahrea for the rest of my life. I'm supposed to be on the e.coli antibiotics for another week but am supposed to call him this week and let him know how I am doing but I don't think he is going to do anything since the antibiotics aren't doing anything. I already asked about switching my diet but he said it wouldn't do anything.

I think you either need a second opinion from a different dr or you should just try the diet. What kind of dr says you just need to "live with" diarhea?!?! Not a very good one.