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Wondering If Anyone Has My Same Symptoms?

Not2sure

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Not2sure Rookie
Not2sure
Posted

I posted yesterday and had no one reply, so I'll try this again. I'm experiencing some strange behavior in my bowel, that has only occurred since my recent colonoscopy. Thinking that I was having trouble after taking the laxatives that it might take a while to recover, but it's been over two months now and I've lost some weight, feeling tired and am having lots of diarrhea with only stool. I went back to the colonoscopy doctor and they ordered stool tests which all came back normal. No bacteria, no parasites, and normal fecal fat. So I did some research on line to see what might be causing it, and that's when I thought it might be an allergy to Wheat, so I cut out wheat and it cleared up for 4 days in a row, and then I must have ate something I didn't think had wheat and it came back, so I consciously made an effort again to not eat any wheat and this morning my bowel was normal again.

Since I've had no symptoms of pain or discomfort, I was wondering if anyone else had experienced what I have? It's too early in the process to know what is going on, but I have another appointment with the doctor the end of this month. I've read if I should get tested for Celiac that I should be on wheat before testing. Right now, I'm trying to stay off of it to see if my condition clears up.

Anyone else having any similar issues?

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Rebecca Madrid Newbie
Rebecca Madrid
Posted

First of all, if you are having a reaction, cutting out wheat will not eliminate all gluten. You have to watch out for many other things as well. you can find a couple good lists on celiac.com and celiac.ca

Secondly, if you want a formal diagnosis, you can't get off the gluten just yet. I had a doctor tell me too and I ended up testing negative, now I have to return to gluten for 6 weeks to be tested again. My advice is to maintain it in your diet in moderate quantities for the rest of the month. For example, don't go eating half a pizza, but try a slice, or a few crackers, whatever you can tolerate enough to last a month.

In terms of your symptoms, yes, this is exactly what I went through as well, but for me it got to the point where i would be violently ill after contact. I eat at a dining hall at school so I'm kinda putting my health in the hands of others. Thats why you should be careful to not ingest too much over the next 4 weeks.

You may not have Celiac Disease, it is possible to have Non-Celiac Gluten Intolerance, or a wheat allergy. This is why you should get tested, if you are allergic to only wheat, your list of danger ingredients gets shorter.

I went through this while away from home, so I can understand the struggle. I was lucky enough to have a very supportive friend. I suggest you tell the people closest to you what is going on, it's nice to do it without feeling alone.

If you'd like to keep talking and you dont want to do it on the forum, feel free to email me at rlmadrid@live.ca.smile.gif

danaf617 Explorer
danaf617
Posted

I'm not experiencing exactly what you are although there is some similarity. My symptoms started after what I think was a stomach virus or food poisoning. I had violent diarrhea for hours, really similar to the bowel prep for a colonoscopy. That was in December and it hasn't been right since. I am dealing with constipation and diarrhea. Although I must not have oily stool cause I really can't picture it when you said it. And unlike you, I'm having pain all day, every day. I haven't altered my diet other than cutting out the IBS "bad foods." My blood work for celiac came back normal and now I am waiting for my Enterolab tests to arrive.

I'm sorry that you're having problems and I hope you can find an answer soon!

Rebecca Madrid Newbie
Rebecca Madrid
Posted

dana,

The constant pain is normal, I've been off four months and I still hurt some days. Just remember that how you feel is the key, you can be gluten intolerant without having celiac disease. Once your results have come in, perhaps you should try removing gluten anyways?

Just my thoughts.

Good luck.

Becca

danaf617 Explorer
danaf617
Posted

dana,

The constant pain is normal, I've been off four months and I still hurt some days. Just remember that how you feel is the key, you can be gluten intolerant without having celiac disease. Once your results have come in, perhaps you should try removing gluten anyways?

Just my thoughts.

Good luck.

Becca

That's my plan, Becca. Thanks. :) I didn't want to eliminate gluten yet because of the testing but after I send the test kit back to Entero Lab, I'm going to give gluten-free a try for 3 months.

Not that I'm hoping to be Celiac, but I am hoping for an answer. I'm going to be so pissed if I can't find a reason and I really do just have IBS. I don't want to live like this anymore! I just want my normal, happy body back that I had 6 months ago. :(

Not2sure Rookie
Not2sure
Posted
  • Author

Hello and thank you to all who have responded. I am certainly not sure of what is going on, but I have noticed that since I've made an extreme effort not to consume any gluten, that the oily stool has cleared up quite a bit. On Monday, it being a holiday we had folks over for a cook out and I ate a marinated salad (raw tomatoes, onion, olives and a little feta cheese), someone else had prepared and brought it so I don't know the dressing they used. I had some marinated chicken strips(marinated in italian dressing). So I experienced a little oily stool after that day, but have become more strict the rest of the week and it's seems to have improved. I'm still having loose and soft stool with a little bit of undigested food. I am torn about what to do about the testing.

What kind of testing are you folks talking about? Is there a certain type of test that should be done?

mushroom Proficient
mushroom
Posted

Hello and thank you to all who have responded. I am certainly not sure of what is going on, but I have noticed that since I've made an extreme effort not to consume any gluten, that the oily stool has cleared up quite a bit. On Monday, it being a holiday we had folks over for a cook out and I ate a marinated salad (raw tomatoes, onion, olives and a little feta cheese), someone else had prepared and brought it so I don't know the dressing they used. I had some marinated chicken strips(marinated in italian dressing). So I experienced a little oily stool after that day, but have become more strict the rest of the week and it's seems to have improved. I'm still having loose and soft stool with a little bit of undigested food. I am torn about what to do about the testing.

What kind of testing are you folks talking about? Is there a certain type of test that should be done?

Your doctor can do a blood test called a celiac panel to check for gluten antibodies in your bloodstream. Normally, if this test shows a positive result you will be referred to a GI doc who will perform an endoscopy and take tissue samples from your small intestine to check for damage.

Do be aware that you must continue to eat gluten until the testing is completed, because if you stop eating gluten now the antibodies will go away and your intestine will start to heal.

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Not2sure Rookie
Not2sure
Posted
  • Author

Your doctor can do a blood test called a celiac panel to check for gluten antibodies in your bloodstream. Normally, if this test shows a positive result you will be referred to a GI doc who will perform an endoscopy and take tissue samples from your small intestine to check for damage.

Do be aware that you must continue to eat gluten until the testing is completed, because if you stop eating gluten now the antibodies will go away and your intestine will start to heal.

I received a phone call from the Doctor's PA and she said that my stool testing came back normal for parasites, bacteria and fecal fat, but when I told her that my symptoms has diminished after avoiding gluten, she said that we should do a test for Celiac. So I'm waiting now for the lab request to come in the mail. I spoke with the nurse assistant today and when I told her that I'd been off gluten for about 2 weeks and would that matter, she said no. She said that she knew that I'd been reading on line about celiac but it didn't matter that I'd gone off gluten before doing the test. She said that if I have an antibody to celiac it would be there, even if I hadn't eaten gluten. SO.....this certainly contradicts all that I've read on this forum and I want to know what you think?

Thanks a bunch for all of your input! :)

frieze Community Regular
frieze
Posted

I received a phone call from the Doctor's PA and she said that my stool testing came back normal for parasites, bacteria and fecal fat, but when I told her that my symptoms has diminished after avoiding gluten, she said that we should do a test for Celiac. So I'm waiting now for the lab request to come in the mail. I spoke with the nurse assistant today and when I told her that I'd been off gluten for about 2 weeks and would that matter, she said no. She said that she knew that I'd been reading on line about celiac but it didn't matter that I'd gone off gluten before doing the test. She said that if I have an antibody to celiac it would be there, even if I hadn't eaten gluten. SO.....this certainly contradicts all that I've read on this forum and I want to know what you think?

Thanks a bunch for all of your input! :)

the antibodies are made in your intestintes, if you stop eating gluten containing food, they antibodies stop being made....true they dont immediatly disappear, but if they were only milding elevated to begin with you may indeed get a false negative. good luck

Rebecca Madrid Newbie
Rebecca Madrid
Posted

Not2sure,

I had a false negative because my doctor actually told me to remove gluten before getting tested. You said your waiting for the lab request?? I would suggest having some gluten before taking the blood tests. Then you know your result is valid.

Good luck.

Rebecca Madrid Newbie
Rebecca Madrid
Posted

That's my plan, Becca. Thanks. :) I didn't want to eliminate gluten yet because of the testing but after I send the test kit back to Entero Lab, I'm going to give gluten-free a try for 3 months.

Not that I'm hoping to be Celiac, but I am hoping for an answer. I'm going to be so pissed if I can't find a reason and I really do just have IBS. I don't want to live like this anymore! I just want my normal, happy body back that I had 6 months ago. :(

Well, I had blood tests done, and I'm waiting for an upper endoscopy in August. I have to get back on gluten for this and its going to be awful going back. I don't know what you mean by test kit for EnteroLab. sad.gif The process as I understood was blood tests for antibodies, followed by the upper endoscopy. I would recommend you stay on the gluten-rich diet if there may be a need for other tests though. Trust me, after feeling better, the last thing you want to do is get sick again.

Looking for answers Contributor
Looking for answers
Posted

That's my plan, Becca. Thanks. :) I didn't want to eliminate gluten yet because of the testing but after I send the test kit back to Entero Lab, I'm going to give gluten-free a try for 3 months.

Not that I'm hoping to be Celiac, but I am hoping for an answer. I'm going to be so pissed if I can't find a reason and I really do just have IBS. I don't want to live like this anymore! I just want my normal, happy body back that I had 6 months ago. :(

In the meantime, a good probiotic and digestive enzymes can really help. Best of luck to you both!

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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