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Symptoms?


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28 replies to this topic

#1 mpost

 
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Posted 11 May 2005 - 12:57 AM

Hello All,
I have been lurking for a few days now, but since I am more confused than ever, I thought I would make that big leap.

I was looking for a comprehensive list of symptoms but I am reading that they are so vast depending on the individual. I hope none of you mind my adding my own story to this mix in the hopes that someone will say, "Hey, I did that!" This is a big jumble because I never paid attention to when anything happened.

I'll start with nerve damage in both of my feet. I've had surgery on one but not the other. I have no idea if this is in anyway related and as such, I feel silly bringing it up. After the surgery, the doctor stated that he didn't know how I was walking, other than building up a high pain tolerance, because I have almost no fat pads on my feet. I do know that my grandmother had the same problem so maybe this has nothing to do with it.

I don't know when this started - years back - sometimes when I stand up, I have to "wait it out." I feel like I am going to collapse. It is a strange feeling and I don't know how to describe it other than to say that I feel like I am going to collapse. Up until I had my daughter, I would refuse to sit down. It passes within a few minutes, but it is a dizzy, incredibly weak feeling. I also have severe joint pain during these episodes and also times without the feeling I am going to collapse.

About 10 years ago, I went to a doctor who said I was having "brain seizures" and I needed to relax. My jaw would lock and I would start trembling. People wouldn't notice unless they were talking to me. I would try to talk back - and actually thought I was pulling it off quite well - but then I was told that I was mixing up my words. For instance, I could put a sentence together but instead of saying "car," I would say something like "butterfly." As I would start coming out of it, I would have these intense cravings for Whole Milk and/or Liver. The doctor didn't even run any tests on me. He just said they were brain seizures and my body's way of telling me that if I didn't learn to relax, it would do it for me.

By the way, I am extemely anxious, perfectionist, and all of that. In other words, I stay stressed out.

Then I had to have my gall bladder removed. Three days after the surgery - and this is so embarrassing to say - I started the "chronic diarrhea" phase of my life. It has completely taken over my life. I had just started my final semester of my Bachelor's degree with one week into the semester when I had to have emergency surgery. I had just moved. In other words, I was stressed more than normal.

I am writing all of this because I have finally gotten the nerve to go to the gastro doctor. I didn't know where else to go. I have been dreading any type of exams, as well as the colonoscopy, but finally decided that my days have got to be planned around husband and daughter - and not the bathrooms along the route! The doctor tells me after a 10 minute talk, that he suspects I have either Crohn's or Ulcerative Colitis - both of which I researched to discover have been misdiagnoses of celiac disease. I only have one symptom - the major bathroom problem - for both of these conditions. But in looking at some of the lists for celiac disease, I have more than a couple.

I should also say that I am not losing weight. I have never been a tiny person, but after the birth of my daughter, I gained something like 60 pounds. I only gained 15 during pregnancy. The doctor said that it was just taking my hormones longer to catch up with the birth.

I guess at this point I am venting? I am just ready to move forward with my life. I put so much hope in going to this doctor thinking that he could "fix" me, and now he is suspecting me of conditions that I don't even two symptoms for. Can someone help me? I am supposed to go back to him in two weeks, at which point he will schedule a colonoscopy. I have already done the labwork so I will get the results then.

When I first found this site, I was going to just go gluten-free and see if that improved anything. Then I read here that I shouldn't do this until testing is completed. Could someone offer any sage advice? I would appreciate any suggestions. And I apologize for such a long post.

Thank you!
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#2 darlindeb25

 
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Posted 11 May 2005 - 03:00 AM

well--i will try this again--there is a post monster lurking here today--ate my post 2 times now--anyways--you sound celiac to me--the diarrhea is a definite synptom--you sound like i used too--email me if you would like to talk---darlindeb25@aol.com -----deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 KaitiUSA

 
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Posted 11 May 2005 - 03:09 AM

You said you were not losing weight....not all celiacs get this symptom. Some get weight gain, and some can be a perfect weight and still have it.
Some celiacs don't get symptoms so that's another thing that makes it hard to diagnose.
It sounds like you are a candidate for it. Yes, doctors misdiagnose for things like Crohns and IBS all the time..so make sure they check you for celiac and that celiac is not overlooked if you have it.
And make sure he gives you a full celiac panel:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA
Alot of doctors only do some of these tests which can lead to misdiagnosis...also a gene test would be good for you to have done. 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

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Feel free to email me anytime....jkbrodbent@yahoo.com

#4 lovegrov

 
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Posted 11 May 2005 - 04:47 AM

Celiac is, of course, a possibility and you should be tested. But for the anxiety have you ever tried either a medication or learning relaxation techniques? I know some people object to the medications, but after experiencing a severe personal loss, Zoloft is the only reason I'm semi-functional right now.

richard
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#5 emmybeans

 
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Posted 11 May 2005 - 07:18 AM

I personally am not willing to ingest gluten for the test....I know it bothers me so I've been "self diagnosed." I hate the way I feel after having gluten so I don't think I need a formal diagnosis..that's just my opinion. I'm not sure if there is a reason to be diagnosed other than validation..amybe someone else can shed some light on that. I also, like you, pretty much plan my life around where's the nearest toilet and i hate it. I've found that when i'm gluten-free I don't have that problem nearly as much (if at all). I too gained very little weight with my last pregnancy, but afterwards gained about 25 pounds, very quickly. I went from a gestational diabetic diet (low carb ie very little if any gluten) to just eating "normally"..I had debilitating stomach aches for almost two years before I figued it out!
I hope my experiences have at least made you feel that you are not alone.
Best wishes!
Laurie
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#6 mommida

 
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Posted 11 May 2005 - 07:59 AM

Get the testing done while you are hopefully still on a gluten diet.
It can rule out the long term problems associated with chronic "D". A gluten free diet can be helpful for IBS. A clear cut diagnoses will give you a peace of mind (after time grieving for a previous life).

Testing was not a good experience for me. I went on a gluten free diet before testing. I am self diagnosed because of my daughter's diagnoses. Her genetic test was positive for DQ2 and DQ8.

Laura
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#7 mpost

 
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Posted 11 May 2005 - 10:59 AM

Thank you all so much for responding. I was going to say that none of you would know how much that meant to me, but then again, if someone stumbled across all of this as I have, then you would! I don't know proper ettiquette for these boards, so feel free to correct me. I am including questions and responses to the whole thread.

Kaiti, thank you for the list of tests to request from the doctor. I've only seen him once so far, so I am not really sure how he will take my request, but I will be assertive!

Laura, why was the testing not a good experience? Is it not just bloodwork? At this point, I am thinking that I will undergo almost anything. I have been grieving for my previous life for the past 7 years - the pre- chronic "D" era. I met and married my husband after all of this started so he is amazed when we talk about things I used to do in terms of being active. The first website I came across seemed like I could just do this on my own without going to the doctor, but then I started thinking about my daughter. If I do have celiac disease, I would like to know so that I could do something about my daughter? At this point, I don't know what. She doesn't have any symptoms - she's 4 - but neither did I. I just don't want her to end up like this.

Richard, I did try a prescription of Paxil to help with the anxiety, but discontinued its use after about 5 months. I finally decided that I wanted to treat the problem. My anxiety was a secondary symptom to the other problem. I have always been high strung, but not anxious about leaving the house.

And Deb, thanks for the additional support through email! I might take you up on that.

I thought of one more thing after my original post that I hadn't thought of before. I don't know if any of you are into alternative medicine but I had gone to a kinesiology specialist. I won't go into the process because I realize how much like quackery it sounds. This was a year ago. After the testing, she told me that my body was full of toxins as a result of a digestion problem. She is not a medical specialist so she didn't mention any condition in particular. The interesting thing, besides saying that about toxins and digestion, was that when she went to plan my diet, she said that I could not have anything with wheat, etc. because my body doesn't like it! And I didn't tell her any of my symptoms before doing this.

I am excited that I might finally have some answers. I keep thinking - how hard can changing my eating habits be, as opposed to what I am already going through? Then I realize how much processed food I eat! I am not even going to think about vacations and restaurants at this point.

Thank you all so much!
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#8 SabrinaLuvsGluten

 
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Posted 11 May 2005 - 12:41 PM

Hi, I have been through some similar things...I also had problems that sent me to the neurologist, but it wasnt the same symptoms as you experienced..mine were more severe tingling, like my whole body was vibrating all over, and numbness, things like that...I also had to have emergency gallbladder surgery, and the diarrhea can caused from having the surgery, because you dont have a gallbladder anymore...My mother had diarrhea for a year afterwards, and everyone I know that has had the surgery has had problems with it. I also had problems with it, and still do off and on..I just had my surgery last September. I also am very stressed most the time, but I have changed my way of thinking, and prayed ALOT, and it has helped me. I hope you get some answers soon..but wanted to let you know that if the diarrhea didnt start until after you had the surgery, it could be because of the surgery...I would still check in to celiac disease though based on other things you have said. Good luck
Sabrina
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#9 ianm

 
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Posted 11 May 2005 - 02:29 PM

I don't know when this started - years back - sometimes when I stand up, I have to "wait it out."  I feel like I am going to collapse.  It is a strange feeling and I don't know how to describe it other than to say that I feel like I am going to collapse.  Up until I had my daughter, I would refuse to sit down.  It passes within a few minutes, but it is a dizzy, incredibly weak feeling.  I also have severe joint pain during these episodes and also times without the feeling I am going to collapse.

The dizzyness you are experiencing is something that I used to frequently experience when I would stand up. It is not a siezure, it is called vaso vagal (sp?) syndrome. It is an abnormal adrenaline response caused by your blood shifting when you stand up. It causes the heart to beat so hard it becomes inefficient and causes oxygen deprivation in the brain.

A siezure is very different. Siezures are basically electrical disruptions in the brain. They can happen anytime, anyplace. I had extensive test for siezures and it definitly was not the problem. Vaso vagal only happens in very specific instances like quickly standing up. Pain can also trigger a response like dropping something heavy on your toe. Since I have gone gluten-free I have not had any dizzy spells.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#10 mpost

 
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Posted 11 May 2005 - 02:53 PM

Thank you, Ianm, for the information on vaso vagal! I must not have made myself clear on that being separate from what the doctor termed a brain seizure. It is still good to have another answer. So the vaso vagal is not related to celiac disease? I am just happy to be getting answers.

Thank you for your response!
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#11 ianm

 
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Posted 11 May 2005 - 02:56 PM

I don't know if it is directly related but I was so fatigued, brain fogged and generally unhealthy that it made me very susceptible to the vaso vagal.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#12 jknnej

 
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Posted 11 May 2005 - 04:47 PM

Before you undergo testing like a colonoscopy or endoscopy, do the simplest thing: get the blood work done. It is SO easy. Then, if you have a positive in the blood, it would make more sense. From what I've seen, symptoms of celiac disease are ALL over the board b/c of the many other related conditions it brings. So I don't think any symptoms are abnormal!
I'm not saying don't get a colonoscopy; if your dr. thinks you need one then by all means. But why not do the easier test first? You really have nothing to lose by getting the blood test.
It all depends on you and how you want to go about it.
I had the blood test say positive and went gluten-free b/c my dr. was on vacation for a month. I feel SO much better gluten-free I decided I don't care if I'm diagnosed or not. I am still going to get the endoscopy just to make sure my insides are OK but even it says negative for celiac disease I will still stay gluten-free.
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#13 mpost

 
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Posted 11 May 2005 - 05:30 PM

Thank you. That is my plan. On the 26th, I return to the doctor to get the results of the last bloodwork. When I go in, I am going to request the Celiac panel and take a list of what that entails to make sure he gets everything.

I am sure that he will want to do the colonoscopy after chronic "D" for seven years, and I don't have a problem with that. I just want to make sure that he does the celiac panel, too.

I am also planning on doing the genetic testing for myself and my daughter.

Thank you for your response!
Misty
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#14 egardner

 
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Posted 11 May 2005 - 05:42 PM

I'm a newbie, but some advice...be proactive. Ask for what you want, which is the tests, and don't back down if he brushes you off with a "you can't possibly have that response" I got that answer even after I brought up celiac disease only to finally demand the tests and get positives! Don't give up on it, even if you don't have it, knowing will be peace of mind to investigate other diseases and treatments.
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#15 SabrinaLuvsGluten

 
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Posted 11 May 2005 - 09:30 PM

I think I am a bit confused about something. I have read some posts where some of you have said that you got positive blood test results, but wanted to get an endoscopy for a solid diagnosis. What else would make the celiac panel positive beside gluten intolerance/celiac? Would it be possible to have positive blood work, and not have any issues with gluten? Sorry if this is stupid but I just dont get it..
Sabrina
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