I Am Desperate

[SkwurlyGurl]

I will try to make this as short as possible. I need help and I can't seem to find a doctor who will listen to me. If I am lucky, I have a bowel movement once a week. It's usually once every 10-14 days. And, when I do, it hits immediately. I have severe diarrhea when I go - I get sweaty and chilled at the same time and about 1/3 of the time I pass out. When I was a child, my mother (a nurse) did some research and diagnosed me with a gluten intolerance. She took me off of everything gluten-related. My frequent diarrhea stopped. When I moved away from home I resumed eating what I wanted. That was okay for a few years and then the infrequent bowel movements started. The first passing out episode happened when I was about 24. I had a colonoscopy and was only told my colon doesn't operate the way it should. I was told to eat more fiber. I did and things did not get better. Now, I'm 35. At times, I go for 3 weeks without moving my bowels. I have been told it's IBS, but no medication seems to help. I can't get a doctor to even address the gluten thing; they dismiss it, almost with a laugh. I know this is not normal. I'm frustrated. I'm tired of crying over it and I am sick of scaring my boys every time I need to go to the bathroom. I don't know what to do. Could this, in any way, be related to Celiac? How can I make someone listen to me? I can't afford taking all this time off to go to different doctors and "specialists". I don't know where to turn and am at my wits end. Can anyone please offer me some advice? Or just a point in the right direction?

Thank you for reading!

[GlutenKing]

You told you was on gluten diet and it was bad. Then you stopped and it was fine. Then you started again and it was bad again. Why don't you go out off gluten diet again and it will be fine again(possibly)? You need someone to tell you that you are celiac? Your mom already told you. Give it a try and you'll see, can't lose anything. In fact, maybe you'll even save some tears;)

Good Luck.

[ravenwoodglass]

I think you should just go back to being gluten free. When you are diagnosed as a child and then put on the diet you heal. It can take some time before you have enough damage to become clearly symptomatic again. You now have enough damage again. You don't need a doctors permission to be gluten free. Have you told your doctors you were celiac as child and went off the diet?

[SkwurlyGurl]

I love my mother, but she isn't a doctor. I just want a definitive answer. It does make me wonder when doctors won't even address it. On top of this, my grandfather had colon cancer, so I wonder if that has something to do with it. I just don't know.

[ravenwoodglass]

I love my mother, but she isn't a doctor. I just want a definitive answer. It does make me wonder when doctors won't even address it. On top of this, my grandfather had colon cancer, so I wonder if that has something to do with it. I just don't know.

It can be difficult to diagnose celiac, especially in children. The fact that your symptoms resolved when you were taken off gluten was significant. Your Mom may not be a doctor but as a nurse she does have valuable knowledge. You mention that you had a colonoscopy but not an endoscopy. If you need a doctor derived diagnosis then an endo needs to be done, but those can have false negatives as can the blood test. If you need the doctors diagnosis to get back on the diet go back to your GI, be as clear as you can about your history and the fact that you were gluten-free for a long time and when you went off the diet. You may have enough damage to be able to be diagnosed if they will look for it. You have to continue eating gluten until all the tests are finished. After your tests are done, as in the day they do the endo, get back on the diet. The diet and your reaction to it are the best diagnostic tool there is, IMHO.

[Mango04]

I agree with the idea of just going gluten-free. It will save you lots of time and stress in a doctor's office and will very likely give you the answer you've been looking for...

[SkwurlyGurl]

Thank you all for your input. I guess I don't really need an official diagnosis if being off gluten makes me feel better. What throws me off is the constipation thing. As a child, I had diarrhea constantly. Guess I'll do some research and start living gluten-free.

[hannahp57]

My symptoms didn't crop up as a young child.. i was a preteen. and for me it was normal for me to have a bm maybe once a week. sometimes it was more frequent but not often. also when i did go it was usually diarhhea or would soon become diarhhea. i never heard of celiac so i became much worse before we found a diagnosis. my advice is to find a different dr. one who will listen and who knows a little bit more about your particular problem... like a gastro dr. the diagnosis isn't quintessential but if you are someone who may need financial assistance because of the increased price of food and maybe for insurance purposes i would try to get the diagnosis. but get one soon because gluten = damage to your system. the faster you try to heal the better

[MissyJoy]

Thank you all for your input. I guess I don't really need an official diagnosis if being off gluten makes me feel better. What throws me off is the constipation thing. As a child, I had diarrhea constantly. Guess I'll do some research and start living gluten-free.

I agree with the others - go gluten free (or possibly only eat whole foods for a while and add back in things like soy, rice, corn and dairy - these things can cause problems too). But you do need to take control over your bowel movements! That is not healthy to allow your bowels to only empty once a week.

Because of decades of chronic constipation and troubles digesting grains and dairy, my colon quit working. I had to give it some help. My nutritionist recommended I use a natural product called "CALM", its calcium and magnesium in powder form. I experimented with how much my colon needed to move once a day with almost solid stools. (Because of the rectal damage, I don't want stools to be too solid). So I drink CALM once in the morning in hot water, and bowel movements are guaranteed for me later that day. I started with 1 tablespoon of CALM for the first months, but now after a month of going grain free, I only need 1/2 teaspoon, which I think is because my diet is better and my colon is healing.

I hope that helps!

[OptimisticMom42]

I have severe diarrhea when I go - I get sweaty and chilled at the same time and about 1/3 of the time I pass out.

Don't let the constipation confuse you. When my celiacs started this time I would be constipated for a week then explode. I would be so cold and pale my co-workers thought I had the flu (I didn't explain ). Removing dairy and soy from my diet stopped the explosions but then I just didn't go at all. Taking out the gluten solved the missing bm mystery!

Just get back to the basics, meat, eggs, veggies, fruit and rice. Your bowels will thank you!

[GFinDC]

Hi SkwurlyGurl,

First off, I Love your screename! Hmm. I think I've met you before, perhaps many times in fact. Just kidding! Sounds like you know what the problem is already. If you really want a doctor opinion, ask for the celiac blood panel. Or try the Enterolab testing perhaps. There is also a Biocard test available in Canada.

[Evie4]

My constipation was getting really bad, it required laxatives then those stopped working. I tried ALL the recommended stuff...fiber, water, exercise etc. etc. A year ago I greatly reduced (~95% free) gluten from my diet and it immediately alleviated my constipation. I'm now going 100% and hoping that my 16 year struggle with diagnosed IBS will if not resolve itself, at least get better. I've noticed that my intolerance for gluten has gone up in the past year and now smaller amounts effect my ability to go daily.

I had episodes of diarrhea with chills, nausea etc. when I ate too much saturated fat. It seemed to happened whenever I ate rich foods and I thought perhaps my tolerance for fat was low as I eat pretty low fat, and I eat very lightly. If I eat too much fatty ice cream I will feel nauseous and my heart starts racing. It could be something else...so much stuff in processed foods. We make our own now from organic milks and I have no problems.

I am struggling at the moment with how I will deal with educating those around me. I can't bring myself to pollute my body in hopes of getting a diagnosis. Then there is the possibility that it is 'only' intolerance, and that much I've figured out myself. I'm getting a lot of support from my husband and my best friend. I'm going to a family reunion in a couple weeks and it's making me nervous. I guess part of me thinks if I got an official diagnosis, it would be easier to justify my gluten-free diet to everyone. I can see some challenging conversation already. I'll stick by my guns and bring my own food I'm trying to remind myself to focus on the positive, which is I have improved my condition through going gluten free.

[SkwurlyGurl]

Thank you so much again - ALL of you. Just your support and encouragement gives me hope and makes me feel a lot less crazy! I've been reading through the forums a lot and I have come to find that I am not the only one who has had a hard time getting a doctor to listen. So, tomorrow - it's off to the library for me. I've got a lot of studying to do!