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So Dissapointed...

HelpinOhio

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HelpinOhio Explorer
HelpinOhio
Posted

If you have read my other threads you know that Ive been dealing with some mystery illness for the past 7 years, if not more. Im only 18 years old so thats a large portion of my life. About 2 years ago I had to quit high school and go to a different place and later onto the computer classes, I cant concentrate enough to even do them. Ive been stuck in my house most the time for the past 10 months because I feel and look too bad to do anything. Its horrible. I try to do stuff and have an normal life buts its impossible and I fail horribly.

I was tested many times for many different things including being treated for possible mental disorders, and nothing ever worked out. They never really found anything in those 7 years. My mom was diagnosed with Celiac Disease many years ago, and I didnt learn she had it until about 1 1/2 years ago (she doesnt follow the diet). I thought that Celiac Disease might be it. Over a year ago I got the blood test for Celiac Disease done twice at different doctors, it came back negative both times. I thought it may have been because I had already started on a majority gluten free diet before that. I was tested again about 2 months ago after eating gluten regularly for many months and added gluten for a month prior. It came back negative again. I got the endoscopy done about 1 month ago, and again it came back negative. My main symptoms are similar to a serious disease like Lupus, but Ive got my ANA tested and it came back negative no signs.

Now Ive been on a 100% (at least 99.9% incase I missed a tiny bit) gluten free diet for almost a month now and Im seeing no improvements. My stomach felt funny at first, but since then there has been no change. Im so disappointed because I thought I had finally found out what was wrong with me and what had ruined my life and my childhood. I thought this was going to be some miracle cure and everything was going to be all right and my new life would start and I would finally be able to live. I guess its not that simple. The only other things that it could possibly be are not curable.

Im going to continue on the gluten free diet for at least another month if not two just to give it more of a chance and make sure. Thats all...Thanks for everybody that tried to help me on here but it looks like this is not it.

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Lisa Mentor
Lisa
Posted

Hello Ohio,

May I ask, have you been tested for Lyme Disease?

Gfresh404 Enthusiast
Gfresh404
Posted

I'm sorry to hear that. But, like you said, try to stick with the diet for a little longer. It takes some people many months before they starting noticing improvements. That said I would also continue to look for other possibilities. I know it's frustrating, but if you keep searching you will find your answer. I was tested for celiac three different times, all negative. But I never gave up and eventually discovered that gluten was the problem.

Also, I'm sorry but I have not been following your other posts. What symptoms are you experiencing? And have you ever been tested for food allergies or have you ever done an elimination diet?

HelpinOhio Explorer
HelpinOhio
Posted
  • Author

Momma Goose, yes I have been tested for Lyme Disease. I was just tested for it about 6 weeks ago along with many other things. I think Ive been tested for it in the past as well.

GFresh404, here is a topic I made with a list of about 90% of my symptoms: https://www.celiac.com/gluten-free/index.php?showtopic=56173 .

I don't think Ive been tested for food allergies, and haven't went on an elimination diet yet.

oceangirl Collaborator
oceangirl
Posted

HelpinOhio,

Not to be too nitpicky, but Lyme is difficult to diagnose and can mimic many other things, notably lupus among them. The ONLY lab in the country that is considered accurate (according to many, many I know who took YEARS to be accurately diagnosed with Lyme) is a lab called "IgeneX" lab- it's in California. I am currently in the process of getting my son's bloodwork sent to them; he's tested negatively to Lyme multiple times but his symptoms warrant further investigation.

Just something to keep in mind...

Good luck and feel better,

lisa

Foxfire62 Newbie
Foxfire62
Posted
If you have read my other threads you know that Ive been dealing with some mystery illness for the past 7 years, if not more. Im only 18 years old so thats a large portion of my life. About 2 years ago I had to quit high school and go to a different place and later onto the computer classes, I cant concentrate enough to even do them. Ive been stuck in my house most the time for the past 10 months because I feel and look too bad to do anything. Its horrible. I try to do stuff and have an normal life buts its impossible and I fail horribly.

I was tested many times for many different things including being treated for possible mental disorders, and nothing ever worked out. They never really found anything in those 7 years. My mom was diagnosed with Celiac Disease many years ago, and I didnt learn she had it until about 1 1/2 years ago (she doesnt follow the diet). I thought that Celiac Disease might be it. Over a year ago I got the blood test for Celiac Disease done twice at different doctors, it came back negative both times. I thought it may have been because I had already started on a majority gluten free diet before that. I was tested again about 2 months ago after eating gluten regularly for many months and added gluten for a month prior. It came back negative again. I got the endoscopy done about 1 month ago, and again it came back negative. My main symptoms are similar to a serious disease like Lupus, but Ive got my ANA tested and it came back negative no signs.

Now Ive been on a 100% (at least 99.9% incase I missed a tiny bit) gluten free diet for almost a month now and Im seeing no improvements. My stomach felt funny at first, but since then there has been no change. Im so disappointed because I thought I had finally found out what was wrong with me and what had ruined my life and my childhood. I thought this was going to be some miracle cure and everything was going to be all right and my new life would start and I would finally be able to live. I guess its not that simple. The only other things that it could possibly be are not curable.

Im going to continue on the gluten free diet for at least another month if not two just to give it more of a chance and make sure. Thats all...Thanks for everybody that tried to help me on here but it looks like this is not it.

What are your symptoms?

HelpinOhio Explorer
HelpinOhio
Posted
  • Author
What are your symptoms?

I posted the link to the thread I made with all my symptoms in my last post.

Here it is again: https://www.celiac.com/gluten-free/index.php?showtopic=56173

Just click that link and it will bring you to the thread where I wrote down 90% of my symptoms.

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mommida Enthusiast
mommida
Posted

Hello Ohio,

There is enough evidence to prove a gluten free, casein free diet can help in a lot of auto-immune disease cases.

I want you to continue on a gluten free, casein free diet because of the family history and the Celiac testing seems to be done. Then I suggest you keep a food journal and do a rotation diet starting with the top 8 allergens (well wheat is in the gluten so I wouldn't add that back in). I have seen first hand with my daughter that allegery testing can be completely useless, and yet delayed food reactions can be so extemely devastating to an individual's body.

It took me about a year to feel comfortable on the diet, and stop having slip-ups with hidden gluten. It will give a chance to be pro-active and in charge of part of your health care while you wait for a medical breakthrough with your doctor.

My thoughts and prayers are with you. All the things on your shortlist for testing, MS, Lupus, and Lyme aren't easy to diagnose and you need to be working with a specialist.

Hang in there kiddo! Keep posting here, this board cares and can be the best virtual friends ever.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Hello HelpinOhio,

Just wanted you to know that I'm also reading along and wishing you good health. I've only known about my celiacs since March and my reactions were so straight foreword that my dr. didn't even run any tests other than a food allergy panel. So I don't feel qualified to give you advise other than this...

I've done a little research on the foods I've been asked to give up. Mainly grains, dairy and soy. I found that all of these have long lists of reasons why they sould not be eaten by anyone, celiac or not. I discourage my family from eating these and refuse to feed them to my pets.

Please try an elimination diet and food journal as the other posters have suggested. Even if you never find the name of what is making you ill, good nutrition can't hurt.

HelpinOhio Explorer
HelpinOhio
Posted
  • Author

How hard is it to eliminate Casein, Dairy, Soy, and Gluten at the same time?

Ive noticed that a lot of the gluten free food Ive been eating has either Casein, Dairy, or Soy in it so Im guessing it will be incredibly difficult to eliminate all of those at the same time.

I already know for a fact that I have some lactose intolerance, so Ive been staying away from most dairy products, but if something just has a small bit then I still eat it.

Ahh this is so frustrating. Im willing to try almost anything though.

GFinDC Veteran
GFinDC
Posted
How hard is it to eliminate Casein, Dairy, Soy, and Gluten at the same time?

Ive noticed that a lot of the gluten free food Ive been eating has either Casein, Dairy, or Soy in it so Im guessing it will be incredibly difficult to eliminate all of those at the same time.

I already know for a fact that I have some lactose intolerance, so Ive been staying away from most dairy products, but if something just has a small bit then I still eat it.

Ahh this is so frustrating. Im willing to try almost anything though.

I'd say it' not hard at all to eliminate Casein, Dairy, Soy, and Gluten at the same time. That's my usual diet. You probably will find it easy if you do your own cooking from scratch, using whole ingredients. Taters, carrots, rice, eggs, meats, fruit, etc. I try dairy once in a while but it always causes a reaction for me. If eat dairy I have a very hard time getting any sleep. Sometimes for a couple 3 days running. Like this afternoon I ate about 1/3 of a single Tostitos Cool Ranch chip, just to see what it would do. They have some dairy in them. I am feeling the buzz still tonight 8 hours later.

Korwyn Explorer
Korwyn
Posted
Now Ive been on a 100% (at least 99.9% incase I missed a tiny bit) gluten free diet for almost a month now and Im seeing no improvements. My stomach felt funny at first, but since then there has been no change. Im so disappointed because I thought I had finally found out what was wrong with me and what had ruined my life and my childhood. I thought this was going to be some miracle cure and everything was going to be all right and my new life would start and I would finally be able to live. I guess its not that simple. The only other things that it could possibly be are not curable.

Im going to continue on the gluten free diet for at least another month if not two just to give it more of a chance and make sure. Thats all...Thanks for everybody that tried to help me on here but it looks like this is not it.

Hi HiO, :)

I was gluten-free for about a 1 1/2 weeks, and was actually starting to feel worse. So on a chance, I also cut out Dairy. Within a week I started feeling better. Turned out that as my system started to purge itself of the reaction gluten, my reaction to cow's milk and all related substances (which I am also allergic to).

Also, are you checking any meds for gluten? The generic tylenol we buy from Costco has starch as a binding agent in it, so I can no longer take it. A lot of OTC and prescription meds have gluten in them.

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