Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Would You Do?

coryjmclaughlin

Recommended Posts

coryjmclaughlin Newbie
coryjmclaughlin
Posted

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!!!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

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. :blink: 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 Contributor
ElseB
Posted

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

coryjmclaughlin Newbie
coryjmclaughlin
Posted
  • Author

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 Collaborator
cahill
Posted

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 Rising Star
GlutenFreeManna
Posted

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 Enthusiast
eatmeat4good
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


coryjmclaughlin Newbie
coryjmclaughlin
Posted
  • Author

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 Community Regular
sa1937
Posted

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 Collaborator
cahill
Posted

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 :ph34r:

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 Rising Star
GlutenFreeManna
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,183
    • Most Online (within 30 mins)
      7,748
    recipe
    Newest Member
    recipe
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...