In Denial?

[ladybug03]

Hi Everyone!

I have possibly been (or still am) in denial about having celiac disease. I was diagnosed with celiac disease in 2003 after having a postive biopsy and blood test. (I was also anemic). The genetic test, however, came back negative. I was instructed to follow a gluten-free diet, which I did for a short time (a few weeks). I have to say I felt better eating that way, but as soon as the last test (the genetic test) came back negative, that was all I needed to hear to go off of the gluten free diet.

My symptoms and my weight issues also were reasons why I felt maybe I was misdiagnosed. The reason I went to a doctor in the first place was because I was having "attacks". I literally would pass out from having such severe gastric pain followed by diarhea. On a daily basis, though, my bowels didn't bother me too much. But these episodes were debilitating when they occurred. I tried to follow IBS types of restrictions, but they did not help. Things like pizza and beer were instant triggers. But other wise I seemed to tolerate most gluten foods without an attack. I was also overweight at the time of the diagnosis. I have read that some people can be overweight and have celiac disease. I wasn't always overweight. I seemed to become more overweight around the height of all of these problems. I seemed to eat to feel full and at times could never really accomplish that. But I also wondered if those were just stress/compulsive eating type issues (college, etc.).

I am still anemic. I am not gluten free, either. I actually had to have four units of blood via transfusion before the birth of my son. This was before any blood loss had even occurred. All of these issues have made me rethink not being gluten free. I'm sure this sounds so ridiculous to those of you that are gluten free, but I feel like it is such a sacrifice if I am wrong, and not really suffering from celiac disease.

In a possibly unrelated symptom issue, I also suffer from chronic cracks in the corners of my mouth that seemed to go away when I was gluten free. The doctor told me it was some fungal related problem, but now I am wondering if it is all inter related.

I know this was lengthy, but if anyone has any insight, I would really appreciate it!!

[melmak5]

I am still new at this game, but my understanding is if you were diagnosed via blood tests and endoscopy, you have celiac... for the rest of your life.

Some people are asymptomatic, but are still doing damage to their small intestines.

For me, I didn't really feel like going gluten free was a choice or not. The amount of pain I was in, coupled with the regurgitation of almost everything I ate and the non-stop burping, fatigue, bleeding, and D, were ruining my life... to the point I was questioning if it was worth continuing.

The reason I say this is, I think you should be aware of my bias. So the following is in perspective...

I think you should stop eating gluten. I know it is a personal choice, one only you can make, but you are damaging your body and it sounds like many of your problems/symptoms may clear by not eating gluten. Is it hard, yes. Is it fun, no. Will it make you feel better, sounds like most likely yes.

Perhaps there is a local support group you can join that might help with the transition. Best of luck and I hope you start feeling better soon!

[gfpaperdoll]

oh you most definitely have celiac. A positive biopsy is the proof., plus oMG you were also positive via blood test!!!!! What are you thinking??? It never goes away. You are fortunate if you delivered a healthy baby & are still alive & healthy.

The idiot doctor (sorry, sometimes we get a little over emotional, well i do!!) that said you do not have the genes only meant that you do not have DQ2 or DQ8 which is all he knows. BUT we know that 1% to 3% of biopsy diagnosed celiacs do not have DQ2 or DQ8. I have a friend that was dxd via biopsy & she is double DQ1, she is 54, has osteoporosis, & also has HS a serious auto immune disorder of the sweat glands. She was diagnosed one year ago, after I sent her the book "dangerous Grains" My sister is double DQ1 & dxd via blood test & enterolab.com, both these people are also dairy free.

I am sure that I will not be the only one on here begging you to please go to Enterolab.com & get the gene test. We would all love to know what genes you have !!!!!! You could aslo be a DQ3 or a couple of others.

The limited knowledge of the doctors only say you have the celaic genes if you have DQ8 or DQ2 but those of us who live with this illness know better. Double DQ1 is really not a good thing to have... the few doctors that do recognize "gluten intolerance" in addition to celiac know that there are more genes involved than just two. The treatment is the same - avoid all gluten. If you have DQ1 there is also a lot of neurological problems that come with that & additional food allergies for some. You can have that with the other genes also, I am just more familiar with the DQ1 symptoms. My whole family has DQ1 & I have a grandson & a grandaughter that is also double DQ1.

SOOOOOO, would you please look into tgetting the

[gfpaperdoll]

My computer is messing up & I was about to lose my post so I had to start another one, sorry.

anyway, Would you pleeeeeeeease consider getting the gene test from Enterolab.com???

there is also a lot of information there that you might want to check out.

I am very interested in your gene results as I am sure that others will be.

oh & welcome to the boards, you will get a lot of good information here.

[AndreaB]

If you have a positive biopsy you have celiac. There are not two ways about it. A positive on the bloodwork is further proof. Not all the genes for celiac have been identified as of yet. You may not have the main ones but you have celiac.

You need to go gluten free and don't look back. This is for life.

[gfpaperdoll]

me again, I hate to be an alarmist but one reason besides good health that I am gluten-free/DF is to avoid cancer. My mother died of colon cancer. ( we did not know about gltuen then)

today there was an article in the paper about a woman that is in the last stages of stomach cancer, she is dying at 35. They took out her stomach & some esophagus etc a couple of years ago & she has had chemo etc & now it is spreading. of course she is not gluten free... there was a picture of her & her 7 year old daughter. the daughter was blond with blue eyes. I try not to categorize & I know that the Italians get celiac a lot & the Spanish & people that have black hir & brown eyes get celiac. BUT, if you have stomach cancer at 31 or so, & your child is blond & blue eyes, I would be 95% sure you have celiac.

Then there is the guy at my office in his 40's & his mother is a dxd biobsy celiac & he has skin cancer, but there again he sees no need to be on the diet...

[Katydid]

I had to relply when you mentioned 'pizza and beer'. This was the first trigger my husband recognized; however it took the doctors 15 more years to figure out that it was celiac.

As the other posters have said, there is no doubt you have celiac and you need to go gluten free right away to protect your health

YOU CAN DO IT - I KNOW YOU CAN! And if you have any questions or need any help, there are thousands of us here to support you.

[ladybug03]

me again, I hate to be an alarmist but one reason besides good health that I am gluten-free/DF is to avoid cancer. My mother died of colon cancer. ( we did not know about gltuen then)

today there was an article in the paper about a woman that is in the last stages of stomach cancer, she is dying at 35. They took out her stomach & some esophagus etc a couple of years ago & she has had chemo etc & now it is spreading. of course she is not gluten free... there was a picture of her & her 7 year old daughter. the daughter was blond with blue eyes. I try not to categorize & I know that the Italians get celiac a lot & the Spanish & people that have black hir & brown eyes get celiac. BUT, if you have stomach cancer at 31 or so, & your child is blond & blue eyes, I would be 95% sure you have celiac.

Then there is the guy at my office in his 40's & his mother is a dxd biobsy celiac & he has skin cancer, but there again he sees no need to be on the diet...

After reading all of the posts this morning I cried. Both because I am sad to think that I truly have celiac dx, but also because I am relieved to know that I should not be questioning it anymore. I also failed to mention that my father already had a colectomy due to ulcerative colitis with a precancerous conditon and my brother also has ulcerative colitis. This same brother also had a melonoma removed from his arm and was lucky enough to be told that they got it in time. They were both instructed to go gluten free and they do not. My father's family (a very large one at that) almost all have some sort of bowel issue (diverticulitis, colostomies, etc.) My cousin that has diverticulitis just had a mole removed that was melenoma. Both my brother and my cousin are young, too. I think this is scary thinking that all of this could be interconnected, but it is also a relief to know there is something that can be done. Thanks for all of your input!!!

[ladybug03]

My computer is messing up & I was about to lose my post so I had to start another one, sorry.

anyway, Would you pleeeeeeeease consider getting the gene test from Enterolab.com???

there is also a lot of information there that you might want to check out.

I am very interested in your gene results as I am sure that others will be.

oh & welcome to the boards, you will get a lot of good information here.

I will be sure to do a genetic follow up with the information you provided me. I am still learning about all of this, so I will print out what you wrote, go to the website, and I will report back with what I find.

Thanks!!

[nikki-uk]

...and consider yourself very special (well you don't want to be like the 'common coeliacs' ) as you don't have the 'usual' genes.

I'd be interested also as to what genes you have

[Nancym]

Research this yourself but I've read that not all the genes for Celiac disease have been identified. Some percentage of people with celiac disease, do not have the known genes, so they must have some other gene.

Yes, you're in denial. You could end up with cancer or severely compromised health if you don't take the diet seriously. I mean... think about it, is making a change to your diet so horrible that you're willing to jeopardize your life and the quality of your life just to eat a certain food?

Edit: Read through the rest of the thread and see you understand now that your family probably has the same issue you have. Good! I've given up a lot of foods over the years, all grains and dairy, sugar and starches. I just recently gave up diet pop. It isn't easy but at least part of that sadness is due to your addiction to them. Once you've been away from them for awhile you'll find it isn't that hard.

[Darn210]

If you don't do it for yourself, do it for your son. He needs a healthy and happy mom. He may also need your support if he finds out later in life that he needs to go gluten-free. You need to be his best example and mentor.

[confused]

I am one of the ones that do not have the main celiac genes, but i did have an positive blood work, diagnosed DH and postive enterolab results. I would never not go on the gluten free diet cause i dont have a main gene. I have felt the best i have ever felt giving up gluten, casein, soy and garlic then i have ever felt. I have lost weight and get compliments all the time how im looking so much healthier and happier. I am so glad i never said oh i dont have the gene i am fine. I would still be in bed messing out on my kids and my life back. So please go gluten free, you wil be amazed on how well you will feel. I would also have your child tested asap.

I thinks sometimes genes are a good diea and sometimes they are a bad idea. If everyone just went by the genes then many people would never know they are truely celiac.

paula

[gfpaperdoll]

Forgot to say that we will help you through this, one little step at a time.

Also, you can contact your local celiac support group for local restaurant information etc

So be sure to ask us any questions that you want to. & please do not be too overwhelmed, it is really not that hard to go gluten-free if you have some help & support.

[JNBunnie1]

Hi Everyone!

I have possibly been (or still am) in denial about having celiac disease. I was diagnosed with celiac disease in 2003 after having a postive biopsy and blood test. (I was also anemic). The genetic test, however, came back negative. I was instructed to follow a gluten-free diet, which I did for a short time (a few weeks). I have to say I felt better eating that way, but as soon as the last test (the genetic test) came back negative, that was all I needed to hear to go off of the gluten free diet.

In a possibly unrelated symptom issue, I also suffer from chronic cracks in the corners of my mouth that seemed to go away when I was gluten free. The doctor told me it was some fungal related problem, but now I am wondering if it is all inter related.

I know this was lengthy, but if anyone has any insight, I would really appreciate it!!

Two comments from me. One is, YOU FELT BETTER OFF GLUTEN!!!! Who cares if you have celiac disease, really? What's more important, being happy and healthy and doing whatever you want whenever you want without fear of illness, or getting to eat certain foods you don't want to give up and feeling like crap all the time?

There is a great deal of misunderstanding when it comes to weight issues and Celiac. What Celiac does is make you unable to absorb nutrients. Some people's bodies respond by being underweight and malnourished-looking, like mine did. Some people's will behave like those starvation diets that don't work, and they gain weight from the calories in the food because the body thinks its starving, so it doesn't want to release any of the calories. They're two different metabolism types, with the same disease.

My second comment is that you most likely are suffering from a fungal issue, due to the unhealthiness of your system on gluten. The more you damage your intestines, the harder time they have of fighting off invaders. Did you know that 80% of the immune system response to an invader is related to the digestive tract? The digestive tract is also responsible for over half of your hormone production, another reason to let it heal! (My libido went up, seriously.)

[gfpaperdoll]

ladyBug, How are you doing? I have been thinking of you...

[Guest thatchickali]

I will admit I didn't read the responses because I am in a little bit of a hurry, but if you didn't have the stool test for celiac, that is supposed to be the most accurate way of diagnosing. I had a negative blood test, but still felt bad and finally had a positive stool test. If you want to be sure I would have that done through enterolab.

[Lisa]

I will admit I didn't read the responses because I am in a little bit of a hurry, but if you didn't have the stool test for celiac, that is supposed to be the most accurate way of diagnosing. I had a negative blood test, but still felt bad and finally had a positive stool test. If you want to be sure I would have that done through enterolab.

It is my understanding that Enterolabs can NOT diagnose Celiac Disease.

[AndreaB]

It is my understanding that Enterolabs cannNOT diagnose Celiac Disease.

You are correct. They cannot and do not diagnose Celiac. They only tell you whether you have a sensitivity to gluten.

[gfpaperdoll]

I think I have a solution for this nit picking junk, I think I will only refer to the condition that keeps us from eating gluten as a "GLUTEN PROBLEM". SO IF YOU HAVE A GLUTEN PROBLEM ENTEROLAB.COM IS THE BEST PLACE TO GO. and in my opinion in the long run it is the cheapest way to go also. well unless you want to continue eating gluten until you are half dead and hospitalized and maybe they do a biobsy & find that you have villi damage, or you might just die of cancer or something else before that happens.

which really none of this applies to the orginal poster here as she has a positive biopsy & a positive blood test BUT does not have DQ2 or DQ8. So those closed minded people that say that you cannot have CELIAC DISEASE if you do not have DQ2 or DQ8 might want to tell this person that the GLUTEN PROBLEM is no big deal, just like her doctor did. in the mean time she is having health issues and her family has a history of colon problems with colonoscopies...

of course I am double DQ1 so I do not have celiac, I only have a GLTUEN PROBLEM. My mother died of colon cancer, but we think that she only had a GLUTEN PROBLEM, since we did not know about gluten then & never had her tested, she just died young... My double DQ1 sister (in the medical field) was positive via blood test for celiac, but we know that she does not have celiac because she is double DQ1 so she only has a GLUTEN PROBLEM, as also proven thru her test at enterolab.com.

My friend that tested positive via biopsy also has a GLUTEN PROBLEM because she is also double DQ1 as tested thru enterolab.com, she also has osteoporosis cause by a GLUTEN PROBLEM, & HS another auto immune disease.

How many people can afford & do get the gene test after a positive biobsy? & the few that do might be like this poster, they do not have DQ2 or DQ8 & are told that it is okay to eat gluten as that is not their problem because they do not have the gene for celiac.

Momma Goose I see that you are positive via biobsy. Do you know which genes you have?

[Lisa]

I think I have a solution for this nit picking junk, I think I will only refer to the condition that keeps us from eating gluten as a "GLUTEN PROBLEM". SO IF YOU HAVE A GLUTEN PROBLEM ENTEROLAB.COM IS THE BEST PLACE TO GO. and in my opinion in the long run it is the cheapest way to go also. well unless you want to continue eating gluten until you are half dead and hospitalized and maybe they do a biobsy & find that you have villi damage, or you might just die of cancer or something else before that happens.

which really none of this applies to the orginal poster here as she has a positive biopsy & a positive blood test BUT does not have DQ2 or DQ8. So those closed minded people that say that you cannot have CELIAC DISEASE if you do not have DQ2 or DQ8 might want to tell this person that the GLUTEN PROBLEM is no big deal, just like her doctor did. in the mean time she is having health issues and her family has a history of colon problems with colonoscopies...

of course I am double DQ1 so I do not have celiac, I only have a GLTUEN PROBLEM. My mother died of colon cancer, but we think that she only had a GLUTEN PROBLEM, since we did not know about gluten then & never had her tested, she just died young... My double DQ1 sister (in the medical field) was positive via blood test for celiac, but we know that she does not have celiac because she is double DQ1 so she only has a GLUTEN PROBLEM, as also proven thru her test at enterolab.com.

My friend that tested positive via biopsy also has a GLUTEN PROBLEM because she is also double DQ1 as tested thru enterolab.com, she also has osteoporosis cause by a GLUTEN PROBLEM, & HS another auto immune disease.

How many people can afford & do get the gene test after a positive biobsy? & the few that do might be like this poster, they do not have DQ2 or DQ8 & are told that it is okay to eat gluten as that is not their problem because they do not have the gene for celiac.

Momma Goose I see that you are positive via biobsy. Do you know which genes you have?

No, I have not pursued any gene testing. A positive biopsy with total villi blunting was indication enough for a Celiac diagnosis. I have never been critical of Enterolabs, but I prefer more conventional means to diagnose by blood work, endoscopy/biopsy and positive dietary response.

[submarinerwife]

I think the proof was in when you felt better being gluten-free! I have felt so much better on the diet and could never imagine going back it is just so nice to be healthy. And yes some people gain weight instead of losing it. I am one of those people, at my worst before being put in the hospital I gained 40lbs in 2 months! Now I am back down to 120lbs from 185lbs (am 5'5" with a small bone structure I was only 95lbs when I got married.) and feel great! The diet seems daunting at first, but there are so many good things you can eat that even my currently gluten eating children prefer my gluten-free foods! I rarely miss any glutinous stuff and when I do I just remember how close my two children came to not having a mother anymore! Please reconsider the diet. I have not had the genetic test done on myself only the blood and absorption test. Positive celiac reaction on both. I was also very anemic before being gluten free and now I have no problems with it at all. I don't even have to take supplements! I have finger nails (never had those in my life!) and my hair stopped falling out and even turned brown again! (was a dingy greyish/brown). So Please reconsider and start the diet.

Good Luck and Best Wishes

[AndreaB]

gfpaperdoll,

I can see that you are very sentsitive to this issue.

I, in no means implied that just because someone doesn't have the DQ2 or DQ8 genes that they do not have celiac or should not go on the diet. I used enterolab myself. The point is that they cannot diagnose celiac.

If someone feels better off gluten they shouldn't eat it.