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Not Celiac - So How Do I Know If I'm Still Gluten Sensitive?
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33 posts in this topic

I think the goop they give you to drink before a colonoscopy is called Movi-prep or some such. Basically cleans your insides out clean as a whistle. Thee are threads on here where people talk their experiences with the prep and such. Don't plan to go anywhere the day before the test but the bathroom.

I used to have green stool which later became black stool. They say the black indicates bleeding, usually not in the colon though, but higher up. Red blood is supposed to come from the colon. I think the idea on that is if the blood come from higher up it gets digested or broken down so it isn't red any more. I think that is kind of a general thing though, not true in every case.

All that just to say that it is possible to have bleeding and not have Chrohn's. Because I don't have Chrohn's.

Also, you should not expect all your symptoms to clear up in a month. Some people have symptoms continue for years. Not saying at all you shouldn't be checked here, just that still having symptoms doesn't mean their is a more serious problem. If you read my signature or others you can see lists of some other foods that can be problems. Also, eating a whole foods diet is going to get you better faster than eating a lot of gluten-free processed foods. A simple diet works well for us.

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Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

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Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

I can relate to a lot of what you are going through. I am on week 4 of gluten free (week 2 was BAD, I ate lots of processed gluten-free foods and I'm not use to processed so my stomach and intestines were waaayyyy off track). I THINK I am feeling better, bloating is no longer my biggest complaint as it was in the past, but I still get bloated. I feel so discouraged bc like you I want to know if this is it. How long will I have to eat this way to be sure if I am having issues with gluten? It seems so frustrating! I thought I was having issues with dairy the past 3 weeks, but this week I haven't noticed any relation...I feel like I am all over the place. I have C and don't usually get a relieved feeling after BMs, so my doctor wants a colonscopy and also prescribed me an anti-spasmodic to help relax me so I can have more frequent BMs. He said the non-relived feeling could be IBS, can you have IBS and celiac or gluten issues?

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The colonoscopy was AWFUL. The prep, which everyone told me was the worst part, was only mildly irritating. The worst part was the IV. It turns out that colonoscopy prep (which leaves you dehydrated) + Raynaud's disease (which makes your blood vessels contract) is a seriously bad combination. About 5 or 6 different people tried to give me an IV, for a grand total of TWELVE jabs. I am bruised from the elbows down - and I'm a choir teacher so I have to play piano. I am sore and miserable. Fortunately they finally got it, or I was about to have an unsedated colonoscopy. I know people have done it but I did NOT want to.

If I don't actually learn something from this, I am going to be seriously annoyed.

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So the colonoscopy results showed nothing, and I still don't feel right, so I give up. I just ate a full meal of gluten and I'm not feeling any different yet. How soon until I should notice something if I am going to have effects at all?

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Anyone who has been off gluten for awhile may have a reaction when they reintroduce it (this goes for many different foods as well.)

Some people have immediate reactions. Some are more of a built-up reaction. It's really hard to say when / how you will react (if you do react at all.)

Is your doctor going to keep looking for causes?

Could there be any other type of food intolerance going on that you're suspicious of?

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My doctor has now ruled out pretty much everything else - the GI specialist has decreed it IBS. Which, I understand, doesn't mean that I don't have a problem with gluten. I was actually told that I had IBS a few years ago (after an insufficient celiac test and not being informed that not having celiac isn't assurance that you can eat gluten comfortably). In the past 2 years I have therefore tried cutting out pretty much everything BUT gluten to no avail. The only thing that I discovered that really bothered me was sugar alcohols, especially sorbitol.

So, I ate some bread (and a cookie) last night and had no immediate reaction. I actually feel pretty fine today too, but I did have a minor migraine this morning for the first time in weeks (lack of migraines has been one indication that has made me feel like the gluten free diet could be working) and while I haven't had major stomach problems, I've been feeling generally like I have mild menstrual cramps. Except, of course, I don't.

So I've decided to stay mostly gluten free, but to stress about it less. I don't mind doing it at home at ALL - the only thing has been ordering when we eat out (which my husband and I like to do a lot) and not being sure if something might have a slight gluten ingredient in it. So with such a mild result, and knowing that i don't have celiac or some other situation that would make eating small amounts of gluten hazardous to my overall health... when we go out, I'll order the most gluten-free item on the menu and not stress if there's something a LITTLE in it. This plan makes me feel MUCH better. I can live with this, even without the 100% certainty that I have a gluten intolerance (still wish I could have that certainty).

I'm also very pleased with myself for having found a bread pan that is long and narrow to hopefully create the perfect sandwich size bread. Feeling a lot calmer and less frustrated!

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I just posted on another thread....PLEASE be sure to have a stool test. I am now being treated for C Diff, a nasty bacterial infection in the intestines. I was on Cipro for three UTI's in a row, and it caused this bacterial overgrowth. Have you been on antibiotics in the last several months?

I'm not a doctor, but MY advise is to start on a good probiotic right away.

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    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
    • Hi Beachgrl, We have had members with microscopic colitis before, usually in addition to celiac disease.  Have you been tested for celiac disease?  The reason I ask is, it is much better to be tested for celiac before starting the gluten-free diet.  The primary tests for celiac are to detect antibodies to gliaden in the bloodstream.  Those antibodies start to decline when a person stops eating gluten, so the tests become useless. There is no reason a person can't have more than one digestive system disease.  So it is smart to be tested for celiac disease if you can get the testing arranged.  Any change in symptoms after stopping gluten is an indicator that gluten is causing a reaction of some kind.  It could be celiac, or it could be non-celiac gluten intolerance, (NCGI).  There aren't any reliable tests for NCGI yet. Welcome to the forum!
    • I have microscopic colitis. Having a bad flare of D.  On Budesonide for first time for this. It's helping some- only on it a week. Do you think gluten free would help even if tested negative a few years ago?  Was gluten free yesterday and no BM changes. Even had cramps this AM that wasn't really having before. Thank you!!
    • Do you want to tell us the name of it ans where it is located.  maybe someone else will be looking for a restaurant there. Also, it is very helpful if you go to Find me Gluten Free and review it.
    • Hi. Im currently under consultants at my hospital,  and have just been for a blood test to test for celiacs. My symptoms are.... Low weight (8stone and 5ft6tall) Joint pain,particularly my hips and lower back  Severe pain in my gall bladder area which happens spontaneously... Especially after eating foods containing gluten.  When i have foods with wheat in i pain in my  right side just under my bottom rib, i become a bit spaced out and cant focus on anything. Also get diahorrea aswell. I recently contracted C-Diff and was in hospital for 4 days very poorly. Im 29years old (female) and the doctors r trying to work out what is wrong with me. I have always struggled to gain weight,  even after having 2 children i am still only 8stone. I was just wondering if u think i could have celiacs?  The pain in my side has been on and off for 7years! And the last 3years its been severe. And it definitely comes on as soon as i have gluten/wheat.   
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