My Unique Celiac Story And Questions.

[symphonyofdreams547]

around two years ago, out of no where i had developed severe stomach pain.   Never having stomach pain in my life it came as a surprise.   Long story short doctors ran every test in the book and couldn't find anything.  they referred me to a specialist who did tests for celiac disease.   the blood test came back negative but right on the verge of being considered positive.  during this time i developed a severe rash so the doctor said this has to be celiac.  he did an intestinal biopsy and confirmed suspicions with severe intestinal villi damage, i believe he also did genetic testing which came up positive.      after the pain went away life returned to normal and never had pain before or after this.   the strange thing is i feel no better what so ever doing a "gluten free" diet for extended periods and back to eating gluten.   recently i've watched videos from Dr. Osborn who said many people with celiac disease need to go on a 100 percent grain free diet not just remove wheat, rye, barley oats etc.   He said there's different kinds of glutens in rice, corn and other grains that act the same way to people and they need a completely grain free diet to reap the benefits.   

 

On a side now years ago pervious to even knowing what celiac disease was i went on a strict paleo diet of meat, eggs, fruits and veggies.  I felt like a million dollars, depression gone, energy up, joints better, sleep better etc.  then i slipped back into poor habits and went back to feeling bad immediately.    So this makes what Dr. Osborn say makes sense to me and i'm thinking about giving it another go.   anyone have any comments on this?  

[beth01]

Are you gluten free now?  Have you done an elimination diet to see if you have other food intolerances?  Many celiacs have multiple food intolerances and a food and system diary is the only way to figure them out.  If Paleo made you feel great, I would go back to paleo

[symphonyofdreams547]

Are you gluten free now?  Have you done an elimination diet to see if you have other food intolerances?  Many celiacs have multiple food intolerances and a food and system diary is the only way to figure them out.  If Paleo made you feel great, I would go back to paleo

 

currently yes i'm gluten free.   but i've gone periods on both gluten free and not without any changes.   I'm thinking about going strict paleo for a while then slowy adding in something to see how it goes.  like you said it could be dairy 

[bartfull]

I'm not sure I understand but it sounds like you're "back to eating gluten"? If so you are making a big mistake! If you had severe damage that means it would most likely take more than 2 years to heal. (It took me 3 1/2.) And yes, during that time I developed intolerances to lots of other things. Dairy is something a lot of us need to stay away from at first, and some folks have trouble with corn and soy.  

 

If paleo made you feel better, by all means, go back to paleo. Given time you will most likely be able to add back other foods, but gluten is a no-no forever. If you go off gluten and then back on, then off again you are not giving yourself a chance to heal.

[symphonyofdreams547]

I'm not sure I understand but it sounds like you're "back to eating gluten"? If so you are making a big mistake! If you had severe damage that means it would most likely take more than 2 years to heal. (It took me 3 1/2.) And yes, during that time I developed intolerances to lots of other things. Dairy is something a lot of us need to stay away from at first, and some folks have trouble with corn and soy.  

 

If paleo made you feel better, by all means, go back to paleo. Given time you will most likely be able to add back other foods, but gluten is a no-no forever. If you go off gluten and then back on, then off again you are not giving yourself a chance to heal.

Currently I've been gluten free for 3 months.   part of me questions the diagnosis because i never had stomach pain before or after.   but i do have a lot of mental type systems that might be related.   aren't biopsy's the best diagnosis the medical industry has?   much better than blood tests?     

[beth01]

I wouldn't worry if you have only been gluten free for three months.  Like Bart said, it can take a long time to heal.  I am a year past my diagnosis and am still not feeling well, but I was really ill before diagnosis and have been undiagnosed for most of my life.  I have multiple food intolerances, soy, dairy and eggs ( I can have small amounts of egg if it's baked into a recipe, but can't eat an egg).  I know there is something else bothering me, but having a really hard time pinning it down.  It takes time. With all the positive testing you had, the biopsy, the genetic tests, I wouldn't question your diagnosis.

[symphonyofdreams547]

I wouldn't worry if you have only been gluten free for three months.  Like Bart said, it can take a long time to heal.  I am a year past my diagnosis and am still not feeling well, but I was really ill before diagnosis and have been undiagnosed for most of my life.  I have multiple food intolerances, soy, dairy and eggs ( I can have small amounts of egg if it's baked into a recipe, but can't eat an egg).  I know there is something else bothering me, but having a really hard time pinning it down.  It takes time. With all the positive testing you had, the biopsy, the genetic tests, I wouldn't question your diagnosis.

 

how do you feel compared to before?

[cyclinglady]

There are over 300 symptoms that go along with celiac disease. Some folks have NO SYMPTOMS! Check out the University of Chicago's celiac website for more information. They are a leading researcher unlike the SCAM doctor you referred to in your first posting. Please be wary of any doctor who sells you product to help you heal! Check out government, university and peer supportive websites that contain published research.

Do you have lab copies of your test and biopsy results? If you post them we might set your mind at ease. It sounds like you have celiac disease.

The diet? Celiacs only react to gluten in wheat, barley and rye. If you feel better going grain free, then do it!

Oh, I had anemia -- no tummy aches and I baked with gluten from scratch almost daily. I was shocked about my diagnosis too!

I do not mean to sound harsh. It just makes me mad that some sites are not legitimate! I wish you well!

[symphonyofdreams547]

There are over 300 symptoms that go along with celiac disease. Some folks have NO SYMPTOMS! Check out the University of Chicago's celiac website for more information. They are a leading researcher unlike the SCAM doctor you referred to in your first posting. Please be wary of any doctor who sells you product to help you heal! Check out government, university and peer supportive websites that contain published research.

Do you have lab copies of your test and biopsy results? If you post them we might set your mind at ease. It sounds like you have celiac disease.

The diet? Celiacs only react to gluten in wheat, barley and rye. If you feel better going grain free, then do it!

Oh, I had anemia -- no tummy aches and I baked with gluten from scratch almost daily. I was shocked about my diagnosis too!

I do not mean to sound harsh. It just makes me mad that some sites are not legitimate! I wish you well!

 

No i don't have the reports because i was so sick at the time i was basically in survival mode.  

Here's what i remember.

1) anti body blood test came back negative right below cut off

2) intestinal biopsy came back positive for villi atrophy

3) they said they also found i think it was a bunch of white blood cells in intestine showing something attacking it.  I'm not 100 percent sure white blood cells is the right term but it was something like that i remember

4)  genetic testing came back positive.  

 

The main thing that makes me skeptical is it seems like nowadays it seems like gluten free is the new fad.  everybody thinks they have a gluten intolerance.   the skeptical part of me says doctors diagnose it to people they can't figure out whats causing the problem.   my best friends girlfriend had the exact same stomach thing i had that was very temporary and they said she had celiac disease also.  I'm not saying celiac disease doesn't excist because i'm sure it does, it's just i'm skeptical on the high rates of diagnoses.     but i'm going to take your guy's advice and go 100 percent gluten free for a long time and see if anything improves.   i apologize for being skeptical and don't want to down play your guy's conditions.  

[Celiacandme]

I'm a little confused. You were diagnosed around two years ago with celiac disease? Is that correct? But you've only been recently gluten free for 3 months? Am I understanding that you went gluten free and then ate it again?
 

If your biopsy confirmed it then you have it and it is so very, very important that you comply 100% to a gluten free diet. The doctor that studies your biopsy, describes your villi and gives your diagnosis isn't going to do this for kicks. This can become life threatening and I'd hate to have that happen to you because you are being skeptical. The part of your last post saying that "nowadays it seems like gluten free is the new fad" is the exact thought process of those in this world that can put those of us with this serious autoimmune disease at risk for setbacks and additional problems. That thought process would probably cause individuals that serve food at restaurants to not care about cross contamination and so on. I could go on here but you need to realize that this can be a very serious disease. This disease is not a fad. Not for me or any of us on this board diagnosed. Choosing to follow a "fad diet", having an intolerance to gluten, having an allergy to rye or wheat or whatever is different from celiac disease. Try not to focus on why others eat gluten free. Focus on not eating gluten because it is truly harmful for you.

 

I would suggest reading Celiac Disease: A Hidden Epidemic by Peter H.R. Green, MD and Rory Jones.

 

I'm sorry if any of this came off wrong. I would just hate to see something more happen to you. So many people go undiagnosed. You are lucky that you've received yoru diagnosis and can do what you need to do to heal your body. Good luck with staying on the diet for good and make sure you remove any chance of cross contamination in your kitchen. Check any medication or vitamins you take. Make sure everything is gluten free! Best wishes!

[beth01]

I feel better than I did pre-diagnosis.  I used to get migraines really bad and have only had one in a year since going gluten free.  I also had a lot of joint, muscle, and nerve pain that has improved greatly in the last year.  I was frustrated at around the same time you are, you think you should be feeling better, but it takes time.  Most people go through a transition where they feel better going gluten free, then all of a sudden you feel like crap again.  This disease is really hard on your body, from head to toe. It all varies from person to person.

 

How are you not feeling well?  Are you still having stomach issues?  Did you have all your vitamin levels checked also?  Your thyroid levels?  Some doctors only know how to test for Celiac, then leave you in the lurch with all your other labs, or don't do proper follow up testing.

[bartfull]

You've been given a lot of good advice here but I don't think any of us mentioned the Newbie 101 thread in the coping section. Please read the info on the cureceliac.com page (uncluding the links) and then read the Newbie thread (including the links). And please, take this seriously. Staying on gluten can lead to all kinds of nasty things like cancer, lupus, rheumatiod arthritis, and lots of other things.

[symphonyofdreams547]

I'm a little confused. You were diagnosed around two years ago with celiac disease? Is that correct? But you've only been recently gluten free for 3 months? Am I understanding that you went gluten free and then ate it again?

 

If your biopsy confirmed it then you have it and it is so very, very important that you comply 100% to a gluten free diet. The doctor that studies your biopsy, describes your villi and gives your diagnosis isn't going to do this for kicks. This can become life threatening and I'd hate to have that happen to you because you are being skeptical. The part of your last post saying that "nowadays it seems like gluten free is the new fad" is the exact thought process of those in this world that can put those of us with this serious autoimmune disease at risk for setbacks and additional problems. That thought process would probably cause individuals that serve food at restaurants to not care about cross contamination and so on. I could go on here but you need to realize that this can be a very serious disease. This disease is not a fad. Not for me or any of us on this board diagnosed. Choosing to follow a "fad diet", having an intolerance to gluten, having an allergy to rye or wheat or whatever is different from celiac disease. Try not to focus on why others eat gluten free. Focus on not eating gluten because it is truly harmful for you.

 

I would suggest reading Celiac Disease: A Hidden Epidemic by Peter H.R. Green, MD and Rory Jones.

 

I'm sorry if any of this came off wrong. I would just hate to see something more happen to you. So many people go undiagnosed. You are lucky that you've received yoru diagnosis and can do what you need to do to heal your body. Good luck with staying on the diet for good and make sure you remove any chance of cross contamination in your kitchen. Check any medication or vitamins you take. Make sure everything is gluten free! Best wishes!

 

 

Now  that i think about it, it's been around 3 and a half years since diagnosed.    late 2011 is when i was diagnosed.  during the period i was completely gluten free for chunks of time varying from a month to 6 months.   None of that came off wrong, and i appreciate your advice.   I'm going to go on a 100 percent paleo type diet for a while and then slowly ad in some other stuff, but at a minimal keep the gluten foods out.  

[symphonyofdreams547]

I feel better than I did pre-diagnosis.  I used to get migraines really bad and have only had one in a year since going gluten free.  I also had a lot of joint, muscle, and nerve pain that has improved greatly in the last year.  I was frustrated at around the same time you are, you think you should be feeling better, but it takes time.  Most people go through a transition where they feel better going gluten free, then all of a sudden you feel like crap again.  This disease is really hard on your body, from head to toe. It all varies from person to person.

 

How are you not feeling well?  Are you still having stomach issues?  Did you have all your vitamin levels checked also?  Your thyroid levels?  Some doctors only know how to test for Celiac, then leave you in the lurch with all your other labs, or don't do proper follow up testing.

 

My symptoms are just an overall lack of health.  not that i'm sickly or anything, it's just i want amazing radiant health and great energy levels.   moderate depression and anxiety along with just less energy than i'd like are my biggest symptoms. No stomach pains, though i would get diarrhea usually 50 plus percent of the time within hours of eating a lot of bread at a restaurant.  Also i was getting really bad acid relux when i was eating whatever.   now that's pretty much gone.  

 

Vitamin levels are fine, but thyroid is something i probably need to check.   i really don't want to go on thyroid meds so hopefully if it out of wack going gluten free will take care of that.   

[bartfull]

A month or six months is not long enough to really see much improvement. I can't stress it enough - you need to be 100% gluten-free for life. And you will most likely need to be gluten-free for a year or three to see full healing. Once you are totally healed you can add just about anything (except gluten of course) back to your diet. And you will most likely find that little health problems that you would never connect to gluten start clearing up.

 

Some of the surprise symptoms I discovered were, chronic hiccups, swelling feet, charlie horses at night, semi-frequent headaches, and a bunch of other little things I can't remember off the top of my head. ALL of them are gone now.

[symphonyofdreams547]

You've been given a lot of good advice here but I don't think any of us mentioned the Newbie 101 thread in the coping section. Please read the info on the cureceliac.com page (uncluding the links) and then read the Newbie thread (including the links). And please, take this seriously. Staying on gluten can lead to all kinds of nasty things like cancer, lupus, rheumatiod arthritis, and lots of other things.

 

thanks for the advice and the recommended reading material.  I'll read all of that 

[symphonyofdreams547]

A month or six months is not long enough to really see much improvement. I can't stress it enough - you need to be 100% gluten-free for life. And you will most likely need to be gluten-free for a year or three to see full healing. Once you are totally healed you can add just about anything (except gluten of course) back to your diet. And you will most likely find that little health problems that you would never connect to gluten start clearing up.

 

Some of the surprise symptoms I discovered were, chronic hiccups, swelling feet, charlie horses at night, semi-frequent headaches, and a bunch of other little things I can't remember off the top of my head. ALL of them are gone now.

How are you feeling now in comparison?   not just those weird systems being gone but just overall well being?

[symphonyofdreams547]

two other physical symptoms i have that bugs me looks wise is my hair thickness isn't what it used to be.   not balding or shedding, but just lacks body and fullness.   also a lot of puffiness around eyes which really bugs me.   

[bartfull]

I feel GREAT!! My energy level is higher, I have few aches and pains (considering I'm in my 60's), my psoriasis is gone, my digestive problems are gone, my brain fog is better. All in all, I feel better now than I have since I was in my 30's.

 

I won't kid you, it was not easy. I pretty much stayed on an elimination diet for three and a half years. I stuck to foods I knew didn't make me sick and it was pretty boring eating mostly the same stuff every day. Every once in a while I would try to add something back and most of the time it was without success. But finally I had success with one item, and slowly added the rest back. As of now the only foods besides gluten that bother me are guar gum (gives me stomach pains) and nightshade veggies - I can eat them but only in limited amounts or I get joint pains.

 

About the hair? Try sublingual biotin. I take that, plus sublingual B12, 5,000 IU's of D3, calcium, magnesium, zinc, and vitamin C. I had some serious vitamin deficiencies and I believe that upping my vitamin intake helped a lot with the healing. And it wasn't easy finding any vitamins that were free of gluten, soy and CORN, which I was also intolerant to. But once I did, wow, what a difference!

[Celiacandme]

Out of curiosity, when is the last time you went to the doctor? Didn't your doctor want to do some sort of follow up? Did they not voice to you how important it is to be 100% gluten free for the rest of your life. It is amazing how many physicians don't understand this disease. Have you had your vitamin levels checked and a complete physical recently? I hope that you have a good doctor that you trust or that you are able to look for a new one. Give your body a lot of time to heal. Like mentioned already it can take years.

[symphonyofdreams547]

I feel GREAT!! My energy level is higher, I have few aches and pains (considering I'm in my 60's), my psoriasis is gone, my digestive problems are gone, my brain fog is better. All in all, I feel better now than I have since I was in my 30's.

 

I won't kid you, it was not easy. I pretty much stayed on an elimination diet for three and a half years. I stuck to foods I knew didn't make me sick and it was pretty boring eating mostly the same stuff every day. Every once in a while I would try to add something back and most of the time it was without success. But finally I had success with one item, and slowly added the rest back. As of now the only foods besides gluten that bother me are guar gum (gives me stomach pains) and nightshade veggies - I can eat them but only in limited amounts or I get joint pains.

 

About the hair? Try sublingual biotin. I take that, plus sublingual B12, 5,000 IU's of D3, calcium, magnesium, zinc, and vitamin C. I had some serious vitamin deficiencies and I believe that upping my vitamin intake helped a lot with the healing. And it wasn't easy finding any vitamins that were free of gluten, soy and CORN, which I was also intolerant to. But once I did, wow, what a difference!

That's encouraging you feel that much better, especially feeling better in 60's than 30's.  I'm only 28 so i should be feeling amazing.   I'm going to give the food elimination diet a go and see how things go.   

[symphonyofdreams547]

Out of curiosity, when is the last time you went to the doctor? Didn't your doctor want to do some sort of follow up? Did they not voice to you how important it is to be 100% gluten free for the rest of your life. It is amazing how many physicians don't understand this disease. Have you had your vitamin levels checked and a complete physical recently? I hope that you have a good doctor that you trust or that you are able to look for a new one. Give your body a lot of time to heal. Like mentioned already it can take years.

 

 

the two doctors i worked with both worked in hospitals so really they rushed to get me out.   basically they sent me home with a list of foods to eat and that's it.    i had a follow up with a different gastrologist and she thought the pain was something else other than celiac disease but said i have celiac disease and should avoid all gluten.   so that's the extent my work with them except a stack full of bills.   i haven't gotten a full vitamin and mineral panel recently so i should probably do that