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Do I Have This Disease?
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9 posts in this topic

Hi. I know you all aren't doctors, and I do have an appt. to see a gastroenterologist in a week, but I'd like to hear what you think. I have had abdominal trouble for years, which was always attributed to Irritable Bowel Syndrome. I even had both Upper and Lower GIs done 2 years ago, which came back normal. But nothing ever stops the pain and bloating. Recently, I have had another strange thing happening...(sorry about being so descriptive)...which is oily diarrhea and gas. Sometimes I feel the horrible cramping, but when I visit the toilet all that comes out is gurgling gas. Then afterwards I notice that there are pools of yellowish oil floating on the water. I usually have diarrhea, but sometimes constipation. But the worst thing is the cramping. It doesn't seem to get any better after a stool, either. You'd think that would relieve it, but it doesn't. As far as the other symptoms of celiac disease, I do have a lot of body aches and am tired all the time, but this was always attributed to Fibromyalgia. (I think "Fibromyalgia" is just another word for, "We don't know what's wrong with you".) The one thing is DON'T have is weight loss. I am about 40 pounds overweight, and have a very hard time losing it. This makes me think it may not be celiac disease. Also, wheat products bother me a lot - especially whole wheat, as do oats. But other things bother me too, such as nuts, carrots and spinach. What do you think?

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Sounds like classic celiac to me...... Make sure you stay on gluten though until all the testing is complete......

Oh, and by the way, Welcome to the Board!!!!

Karen

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Sounds like it could be celiac. You should get a full celiac panel done to check for it.The following is the panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Everyone has different symptoms and there are over 200 symptoms-you do not have to have any symptoms at all. Some people gain weight instead of lose it too.

Alot of doctors are not up to speed on things with celiac.

Welcome to the board-this is a wonderful site...we have people on here who are very knowledgable and are very supportive.

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Hi.  I know you all aren't doctors, and I do have an appt. to see a ..(sorry about being so descriptive)...which is oily diarrhea and gas.  Sometimes I feel the horrible cramping, but when I visit the toilet all that comes out is gurgling gas.  Then afterwards I notice that there are pools of yellowish oil floating on the water.  I usually have diarrhea, but sometimes constipation.  But the worst thing is the cramping.  It doesn't seem to get any better after a stool, either.  You'd think that would relieve it, but it doesn't.  As far as the other symptoms of celiac disease, I do have a lot of body aches and am tired all the time, but this was always attributed to Fibromyalgia.  (I think "Fibromyalgia" is just another word for, "We don't know what's wrong with you".)  The one thing is DON'T have is weight loss.  I am about 40 pounds overweight, and have a very hard time losing it.  This makes me think it may not be celiac disease.  Also, wheat products bother me a lot - especially whole wheat, as do oats.  But other things bother me too, such as nuts, carrots and spinach.  What do you think?

<{POST_SNAPBACK}>

Yep, that was me nine years ago. Except for the 40 lbs overweight, which happened to me later after my 3rd divorce, but that's another story. And don't worry about being descriptive, we've read and/or posted it all. We're here to help. And the tiredness is very common when you have celiac disease. I mean, not the lack of sleep tired but swimming upstream in a molasses river in January total exhaustion fatigue. Although a classic symptom of celiac disease is unexplained weight loss, that doesn't mean you can't be overweight too. I was and still am, only more so now. And the problems you have with other foods may be because of damage to the small intestine. After going gluten-free, it should show signs of improvement as it heals. The problem I found with celiac disease is that because there isn't a way to help us with pharmocology of one sort or another it is almost like an "orphan" disease. But going gluten-free isn't the worse thing in life. Keep us posted!

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I mean, not the lack of sleep tired but swimming upstream in a molasses river in January total exhaustion fatigue. 

<{POST_SNAPBACK}>

Nettiebeads,

I love your description of the exhaustion we feel!!!! LOL! :lol:

Karen

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Nettiebeads,

I love your description of the exhaustion we feel!!!! LOL! :lol:

Karen

<{POST_SNAPBACK}>

Well, every now and then I let my southerness out. Glad you liked it.

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This is a post by Lisa Baker that was sent to the moderators by accident:

WELCOME TO THE CLUB! I was diog. with a poss. biopsy about three weeks ago and I have had and still do, have the same exact symptoms that you do. I NEVER get too far from a bathroom and the warning bell is a short one.

Take advantage of all the informed peps on this site to help guide you and it will give you some satisfaction that you are not alone -- truely, others share your "pain".

Everyone here can work you through your frustration and you get to know who knows best about a certain subject. Keep checking in and read the posts, go to the forums and choose a subject. Learn-learn-learn. You are your best Dr. because you know your body more than anyone.

(but don't forego the MD"S - inform them)

Keep the faith and as someone told me, "be grateful, Celiac Disease does not controll your life, you controll Celiac." The power is within.

Lisa B.

(just noticed, I have THREE squares....whoah)

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Thanks a lot. That panel you mentioned...do I need to ask the doctor specifically to do those tests, or will he automatically do all that based on my symptoms?

Wanda

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Also, one more thing...I read something about a Selective Carbohydrate diet. (Was that what it was called?) Have any of you tried this? If so, is it hard to stay on? It seems so detailed and difficult. Is it necessary to be that drastic, or does just cutting out the gluten do the trick?

Wanda

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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