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Wondering If I Might Be Glutin Intolerant....
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Ok, so about 4 years ago I was "diagnosed" with IBS, that is, i started suffering from diarrhea, at first mild, then within months it was bad. My doc sent me for blood, urine & stool tests, all came back fine, then he sent me for a barium X-Ray, which came back fine (minus a few minor diverticuli). His diagnosis was IBS, that it was likely *caused* by stress and put me on Paxil & Imodium. So I lived with those pills for over 2 years. Eventually I got fed up with being on Paxil & feeling nothing and quit cold turkey, I was still on about 3 Imodium per day to keep the D from happening. (would still have "attacks" once in a while).

I switched doctors and he came to the same conclusion (no tests were done), and so I continued for another year or so. I recently (about a month ago) went to a different doc one day as my regular GP was not in, he listened to my story and almost immediately asked if I had tried a Lactose or Gluten free diet. Huh? So I tried them both, I cut lactose & gluten out of my diet for 3 weeks.

So after about 2 weeks I started feeling better, I was able to cut my Imodium down to 1 & 1/2 to 2 per day, and rarly felt pain or crampiness. The next step was to re0introduce both lactose & gluten (one at a time), and the lactose went fine, but the gluten was not bad, but I feel crampy and icky again (my Imodium is the same at about 2 per day).

What I'm wondering is what does it mean? (I can't get in to see the doctor for another two weeks, they are booked...) And what should I do next?

Is it possible that I have had Celiac Disease for over 3 years?

Could that be why I haven't seen a great change in my bowel habits, but have seen some?

Is it just possible that the change in foods was just better for my IBS and I do not have Celiac?

*confused & bewildered*

Oh, yeah, I'm 28, Male, never smoked, rarely ever drink, and am usually stressed.

Thanks for any ideas, comments or help you can give, I REALLY appreciate it :D

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It is definitely possible to have celiac for a long period of time and not know about it. I think the average is 11 years until a diagnosis. You should get a full celiac panel to start with at the doctor. The full panel includes:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The 3 most important are the tTG, EMA, and total serum IgA

A gene test may be helpful as well.

Make sure you are on gluten while the testing goes on because being gluten free can interfere with the test results.

Your symptoms sound like celiac but with celiac its hard because there is a broad range of symptoms and one does not even have to have any symptoms.

Celiac is commonly misdiagnosed for things like IBS.

Celiac can be triggered at any time in life. Mine was triggered by mono at age 15. My whole life prior I didn't have symptoms. Other things that can trigger celiac to activate are surgery,stress, bacterial &viral infections, etc.

Hope this helps you out a bit and good luck :D

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KaitiUSA, actually, it helps quite a bit, and to think of it, i did have to rather major infections prior to coming down with the symptoms, on was a bad throat infection (they put me on a double dose of Amoxicillin). that double dosage caused me to become allergic to penicillin, and then the next infection (ear) they put me on something else, it was a few months later i came down with the diarrhea.

I should really mention this to my doc, as well as ask for those tests.

Thanks again soo much :D

/c

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Like many people here, I was also misdiagnosed even after visiting numerous specialists - including gastroenterologists, TWO hematologists, and others.

After my own research pointed toward Celiac, I asked for the blood tests at a routine physical. Upon receiving the results, I went to a new endo in Feb., 2005 and got a small-intestine endoscopy w/biopsy. If your insurance covers these tests, it's probably best to get them.

Good luck

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Christien--

How frustrating all this is for you, I'm sure! I would say there is definitely a good chance you have Celiac, and echo Kaiti--get tested! I was diagnosed with "IBS" about 13 years ago as well...and thought that was my problem, when it was always Celiac. I finally got my diagnosis this year ! Good luck to you--let us know what you find out.

PS--Love your name-CatWhisperer--I have a cat at home :)

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Hello CatWhisperer,

yes, it's possible, to have celiac for a long time and not know about it. As Kaiti already said, the average is 11 years. I'm also 28. I had pain for 7 years and I believe I had it before that also, just not triggered. A tooth surgery triggered the celiac symptoms with me. After that tooth surgery I also became allergic to aspirin. Known triggers of celiac can be stress or surgeries. You mentioned you had a lot of stress. Maybe that was it.

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I want to thank you all for replying, it makes me feel much better, and I now have notes to take to my doctor and will hopefully get tested. My insurance is very good, so I should have no issues there (and I'm in Canada, so most of it is covered anyway).

Just on other question, how long (for those of you who got diarrhea form the Celiac) did it take for the D to "go away"? I'm just wondering, if it takes months, that is fine with me, I just want o stop relying in drugs like Imodium to treat it. (If indeed I am diagnosed with Celiac).

Thanks again, you all are great!

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For me I did not have D with it but I had other symptoms. It varies from person to person for how long it takes for symptoms to go away. My symptoms got significantly better after 3 months but it was a few more months after that until I was back to normal. For some people they can feel better within days...for others it can take months...it depends on how much damage is done and so forth.

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I had diarrhea when I got glutened, I think it took a week or two after I knew what the culprit was. My doc put me on fiber pills, Citrucel, he said they work on diarrhea and/or constipation.

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Hi, Christien,

I am also in Canada. Welcome to the forum. There are several other Canadians on here, but as far as I know we are the only two males. If there are any other Canadian guys active here, please make yourself known.

I'm just outside Toronto. Where are you?

BTW, cats rule the world. Humans only exist to serve them. We own a pet food and supply store. Two cats live at the store and tolerate our presence; four more occupy the house that we maintain for their benefit.

Peter

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Hi and welcome CatWhisperer! (ok I'm a dog person but I've had two wonderful cats in my life, Kitty Thom and Nana (who is male, don't ask about the name!)

About the D.... I have similar diagnoses to you IBS for 11 years and then found out its Celiac. However I still have some issues with the D.... when I first went gluten-free I was totally better in a couple of weeks, I didn't have the runs, life was wonderful.

Then back in April, I went to the panhandle of Florida for a week to visit my brother and was glutened, not just every day but virtually at every meal. Wow was I sick... I see why some people call D the runs.... anyhow... since then I've been totally gluten-free and yet I still have had the runs... I just can't stop them. Well like Judy my Dr. told me that fiber may help... so I'm using Metamucil the kind you mix in water (sheesh I hope its gluten-free, pretty sure it is), I was told it helps promote regularity... its not just for constipation, its for either problem.. C or D.

I started with just one dose a day.... (it really gives me gas, but it says your body adjusts) and now I'm up to the recommended dose on the package... 3 x per day and guess what... no D at all.

I'm still wondering why after I went totally gluten-free again the D didn't clear up on its own... but this has worked for me perfectly. I'm going to start to test other things... go dairy free for a while, soy free and see if I can identify other sensitivities.

Good luck, Susan

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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