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KrisT

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KrisT Explorer
KrisT
Posted

Greetings!

I have started eatting gluten free (one week now) after a member of my other support group suggested it. I have a long story, so I'll try to make it short.

1994 had saline breast implants put in, 1995 became severely ill with all kinds of unexplainable stuff, 1996 diagnosed with Fibromyalgia, .... many years, illnesses, and nearly complete disability later..... April 2005 found out I had faulty implants and was filled with infected fluid for a decade! June 2005 had implants properly removed with an immediate 80% recovery of most symptoms.

Now it is summer 2006 and I have recovered most of my life back. But the one thing that hasn't recovered is my digestion. It seems that my symptoms are not normal to all of the other implant victims, so it was suggested that I might be celiac. I did a little research and found that in fact I do have all of the symptoms of celiac! So I have started the gluten free diet.

I have chronic diarhea. I mean I could buy stock in Immodium!! I get constipated for a few days and then bam, horrible painful cramping diarhea that feels like my intestines are trying to escape my body! It lasts for many hours and I am literally on the couch or in bed because I cannot function through the pain, nausea, and cramping. I have lived with this for nearly 11 years now. It has never seemed to matter what I eat, although I never considered gluten. I get bloated, and nauseas so easily. I also have what was diagnosed as psoriasis on my elbows but no matter what they give me it won't go away! I have even tried every homeopathic thing there is. I eat mostly organic, and mostly healthy foods. I am very health conscious and pro-natural! I am so tired of getting sick with nearly every meal. My family is tired of it too!

What I am wondering is this.... I have no medical insurance and cannot afford to go get any type of testing done, however I NEED an answer. I saw that there is a home blood test kit for only $99, which I could afford. Has anyone tried it? Is it accurate? And if I test positive then when can I expect to feel any better??

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jerseyangel Proficient
jerseyangel
Posted

Hi KrisT--welcome to the board :)

I'm sorry that you've had to endure so much. Honestly, I don't know anything about the test you talked about--I've heard of it, but don't know if it's reliable or not.

If you truly can not be tested, you could go gluten-free and see if it helps your symptoms. A positive response to the gluten-free diet is a valid diagnostic tool--and you don't need a doctor's permission or a prescription to try it. If you deceide to do this, you will need to be 100 percent gluten-free. That includes foods, personal care products, medications, vitamins. You'll need to go thru the kitchen and replace any wooden utensils and boards, collander and any scratched non stick pans. Until you are feeling better, it's a good idea not to eat out to avoid cross contamination.

There is a lot of good information here--I suggest you read thru some of the posts and get a feel for how to begin living gluten-free. Feel free to ask any questions that come up--and you can PM me anytime :)

amybeth Enthusiast
amybeth
Posted

I'm a person who likes to understand everything and wants to have the answer. Is this the reason why you are seeking a specific diagnosis?

You mentioned you have already started eating gluten free. Do you feel a bit better? Have your symptoms lessened? (one week may not be enough time to tell this)

I know of several individuals who have gone on the diet and felt so good that they never sought a diagnosis. They just changed their eating habits permanently and are VERY happy with that. Being an answer seeker, that would be difficult for me to swallow......

If you need the diagnosis for another reason - eliminating other conditions, etc. then you may have to start eating gluten again in order to get a proper diagnosis. The villi begin to heal very quickly once gluten is removed from the diet. In fact, after being sick for over 5 years, my villi healed completely within just 6 mo on the diet. Of course, if I eat gluten again the damage will start all over...........

I wish you luck! Everyone here understands and will be a terrific support system.

Guest Robbin
Guest Robbin
Posted
:) Welcome Kris! I recommend Enterolab if you want some confirmation from a medical authority. I am a person who always questions myself and would always wonder for sure, so I went that route. It is a little expensive, depending on what you have done, but for me it was worth it and you do not have to go back to gluten eating to have the tests. Many of us on here have had testing with them and I have nothing but good things to say regarding Dr. Fine and his staff. (Enterolab.com) If, on the other hand, you are ok with dietary response only, many on here have just quit gluten and felt better and that was it for them. (I had family members who would never have believed me so I really needed to have the tests to end doubt for myself and them once and for all) This forum, I truly believe, saved my life and we all support each other on here. If you ever have any questions, just ask--take care and keep us posted on your recovery/progress.
KrisT Explorer
KrisT
Posted
  • Author

Thank you all!

Yes, I am a person who needs answers just because of my past medical history. So many misdiagnosed problems and so many lost years of living! I did start eatting gluten free and felt amazing for about 6 days, except for the constant hunger (is that normal?), but then on days 7&8 back to the same old sickness routine. I feel like I am addicted to immodium and zantac and I would really love to never have to take either one again.

I am eatting gluten free, but I am not looking at my personal care products or changing my kitchen untensils yet. I didn't even think I had to go that far! I think I will hold off on those things and get the test done. I simply can't afford to make those changes unless I know for sure that is the answer. For me, much of this is a financial issue.

Are there any celiacs who recieve disability because of it? I have thought many times about trying to apply for disability, but I never did because I am trying really hard to convince my body that it can heal. Although for all of the things I have suffered it wouldn't be too terribly difficult to apply for it. Then again, I really don't want half of the things I suffer from on my medical records so that one day I can actually get insurance. Its all so frustrating!!

Thanks for the help!!

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you all!

I feel like I am addicted to immodium and zantac and I would really love to never have to take either one again.

Are there any celiacs who recieve disability because of it? I have thought many times about trying to apply for disability, but I never did because I am trying really hard to convince my body that it can heal.

Thanks for the help!!

First what form of Immodium do you take? The liquid is not gluten free and I would call and check the gluten status of the other types also to be on the safe side. I continued to use the liquid as a preventative so that I could go to the store, pick kids up from school etc in the 1st year gluten free and thought either the diet wasn't working or that I had gotten CC.

If you think you need to get diasability do not wait to apply. If you wait too long you won't qualify because you will not have enough time working to get it. I found this out the hard way. If you are celiac however and you do not have other problems due to years of misdiagnosis after a time on the gluten-free diet you should be able to feel well enough to work. I did not show up on blood tests and noone told me to try the diet. This delayed my diagnosis by almost 10 years. As a result I do have some permanent damage. I am fortunate that I can choose not to work outside the home but I would be in a severe bind if that was not the case.

Rikki Tikki Explorer
Rikki Tikki
Posted

Welcome Kris:

If you feel better with the gluten free diet is that enough for you? I don't think you must have the diagnosis and if you don't feel well can't the doctor just take you off work?

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KrisT Explorer
KrisT
Posted
  • Author

Hello all.

I guess I need to clarify something. I haven't had a job in many years because of all of my health problems. I have my own business that I started last year after my surgery, but I don't have to work any more than I set for myself. I was referring to a more permanent disability... but I see now that celiac disease does not require that.

The diet changes won't be enough to settle my mind. I have to have an answer to get me to that goal of inner peace. If it wasn't something that I have suffered long term, then it wouldn't be such an issue, but what if the diet makes me feel better but I am not celiac? Then what is wrong?? For the last year I thought my problems were all related to fungus, candidaisis. I fought that like crazy, felt soooo much better, but a year later and I am not healed and getting sick all over again even though I know I have fought off the candida. It was a false sense of accomplishment because I wasn't fighting the right battle. I obviously did have a candida problem because I did get better to some degree, but not healed. Now the gluten free could do the same thing to me, and in the meantime I am still causing permanent damage by not having the answer. Wow, how frustrating this all is. I don't know about all of you, but I have been incredibly depressed over the possibility of being celiac and every time I go to the store or go to eat I cry.

Thank you for the support! It always helps so much to know you aren't the only one.

Mayflowers Contributor
Mayflowers
Posted

You've had these severe symptoms for 11 years and you never went to a GI? In my twenties I didn't have constipation but I had severe cramping and then diarrhea. I went to a regualr internest after just a month or so of symptoms, (not 11 years!) and was diagnosed with Irritable bowel syndrome. You should really see a GI and not be asking us. It could be serious.

KrisT Explorer
KrisT
Posted
  • Author
You've had these severe symptoms for 11 years and you never went to a GI? In my twenties I didn't have constipation but I had severe cramping and then diarrhea. I went to a regualr internest after just a month or so of symptoms, (not 11 years!) and was diagnosed with Irritable bowel syndrome. You should really see a GI and not be asking us. It could be serious.

Its great that you had doctors that would diagnose you. I was diagnosed many years ago with IBS and have never had a doctor take my complaints seriously enough to order any tests. I have begged for help and received none. I was never sent to a GI even when I asked to go. Then after a few years of illness I was left without medical insurance. I have had no insurance for about 6 years. When I did have insurance it wasn't good enough to allow the doctors to really diagnose me properly. I think as soon as they saw my coverage they shyed away from any real care they could have given me. I had to borrow money to have my implants removed and am now in serious debt. You are right that it could be serious, but there isn't anything I can do about it other than research for myself and try different things. Imagine if you hadn't gotten any care after a month and were left to fend for yourself. Imagine if every time you asked for help you were told that its all in your head and there isn't anything wrong with you. Imagine having absolutely no faith in the medical community. That's how it got to be 11 years. Not because I didn't try to get help.

CarlaB Enthusiast
CarlaB
Posted

Don't feel bad about not trusting the medical community. I never trusted doc's enough to ask them about what was wrong with me. Several visits to the emergency room, and no doc ever questioned my symptoms or suggested I look further into what was wrong with me ... like it was normal to need an iv for rehydration. My roommate in college was the first one to take me to the er, the doc basically said it was all in my head. I hadn't gotten out of bed except for classes for weeks at the time. I was finally diagnosed at age 43. I was also the kid who always had a belly ache.

There are good docs out there, for sure, but there are also ones who just follow protocol, think celiac is rare, and misdiagnose.

I got tested by Enterolab. You can get the answers you want. Docs don't usually accept it as a diagnosis, which is good because it means you have no pre-existing condition. www.enterolab.com

If you do have a gluten intolerance, your intestines should heal and you should be able to work again. At least Enterolab would be able to tell you if this was your problem so that you know whether you should keep looking or not. I recommend getting the casein and soy sensitivity tests, too. I got the one for casein and was shocked that it came back positive. I never got better until I eliminated it. I wish I had had the test done for soy as well.

KrisT Explorer
KrisT
Posted
  • Author
Don't feel bad about not trusting the medical community. I never trusted doc's enough to ask them about what was wrong with me. Several visits to the emergency room, and no doc ever questioned my symptoms or suggested I look further into what was wrong with me ... like it was normal to need an iv for rehydration. My roommate in college was the first one to take me to the er, the doc basically said it was all in my head. I hadn't gotten out of bed except for classes for weeks at the time. I was finally diagnosed at age 43. I was also the kid who always had a belly ache.

There are good docs out there, for sure, but there are also ones who just follow protocol, think celiac is rare, and misdiagnose.

I got tested by Enterolab. You can get the answers you want. Docs don't usually accept it as a diagnosis, which is good because it means you have no pre-existing condition. www.enterolab.com

If you do have a gluten intolerance, your intestines should heal and you should be able to work again. At least Enterolab would be able to tell you if this was your problem so that you know whether you should keep looking or not. I recommend getting the casein and soy sensitivity tests, too. I got the one for casein and was shocked that it came back positive. I never got better until I eliminated it. I wish I had had the test done for soy as well.

Thank you Carla!

I am going to do my best to save up the money for the Enterolab test. I am amazed as I read all these posts at how many other things could be going on, so many alergies. I wonder how half of the people on here eat at all!

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