Biopsy Results

[Rachel--24]

Well I finally saw my GI yesterday to discuss the results of my biopsy. It was normal which was to be expected after 4 months mostly gluten-free and 2 months completely gluten-free. Even though I expected it I was still sad to hear the results....I was told my biopsy was "text book perfect". I guess I was hoping for a miracle w/out having to do a gluten challenge.

The doc said I will have to do a challenge if I'm not satisfied with my improvement on the diet alone...although he doesnt recommend it for me. He didnt find anything else wrong which is good news. He believes whatever was going on with me before is not happening now most likely because of the gluten-free diet.

Basically he said I am on the right track with my diet and should continue with what I'm doing. He said either I have Celiac or another form of gluten sensitivity but what does it matter because the treatment is the same and its just gluten-free diet...plain and simple.

I think its easier for him to say than it is for me to accept. I wish I had been tested while I was sick but I cant change what happened....now I will continue to have questions until they learn more about DQ1 and DQ3.

I think if I wait about a year and if I'm feeling really good I'll test myself with gluten and see what happens. If symptoms return it will be "official" for me and I'll know for sure. Until then I'm sticking to the diet 100%.

[skbird]

Hi Rachel -

I just recently got my results back from my biopsy, or biopsies (had both colonoscopy and endoscopy done) and I was a little depressed about the results being fine, too. I mean, I expected this - one year gluten-free, if I had any damage at all would be really weird, but I thought there were other things to be found.

Anyway, I know you are wary of the DQ1 and 3 bit and we all like to have some hard facts to back up reality, but you know how much better you feel, that really should be enough to reassure you, and if it's not, then you need to look at why that's not enough. I type this, not because I'm insensitive, but because that was where I was at before when I got my EnteroLab results back, too. I get this attitude I don't like sometimes, it makes me say, "well, there's nothing wrong with me, so I obviously am making up the fact I have a stomach ache right now..." or whatever is causing me discomfort. It's a really dumb attitude, but I do fall for it every once in a while.

I have been seeing my old psychologist recently for this and he said, why can't you just tell people this is you and let them deal with it? Why be so concerned that they accept this info? He pointed out that I was wearing some really goofy shoes, shoes an adult woman in a business job like me isn't likely to wear (fyi, the shoes I was wearing are pictured here on this site: Open Original Shared Link ) and what do I say to people if they look at them funny? I said I don't care, I like the shoes, so what if someone else thinks they're silly? He said, ok, why don't you feel the same way about your diet? Who cares if there's no evident reason for me to follow it, I like it, so whatever? And I realized he had a good point.

Of course I still feel like I need to justify it somehow but I'm getting better at asserting myself. Acceptance, especially personal acceptance, comes in waves until you are there, and it feels natural. Each time I go through another little bout of bad attitude, it lasts shorter than the time before.

Take care,

Stephanie

[Rachel--24]

Stephanie,

I get what you're saying....as always.

The thing is I'm not concerned about what others think. Actually nobody questions me being on the diet and those who are close to me would be VERY upset if I went off the diet or cheated in any way. So far everyone is cool about the diet and they'll ask questions....nobody looks at me weird or anything like that. They actually have a more "protective" attitude about my food now....like they're questioning if I'm eating something "bad"...when I'm not. They wanna make sure I'm not cheating and I think its nice in a way.

The problem is that I was REAL sick and like I told the doctor if I dont have celiac but gluten foods make me sick...WHY are they making me sick?? Thats what bugs me. I wasnt sick my whole life...this came on very suddenly and it was like my body just quit on me. I sometimes wonder if something else happened which caused me to react to gluten and also to chemicals. Or am I bothered by chemicals *because* of the gluten damage?? See what I mean...so many questions. I wanted a definate diagnosis because I didnt want to wonder about other problems. Celiac Disease would have explained everything for me.

My doctor says that we cant possibly say I dont have celiac w/out the gluten challenge but I'm really just going by my genes as far as that goes. He doesnt feel the genes can rule it in or out but I mean really....what are the chances that I'm in the 2% that dont have DQ2 or DQ8...pretty slim.

I just worry about my health or not fully recovering on the gluten-free diet because thats not all thats wrong with me. At least with Celiac I would *know* that I'm still having some symptoms because it will take several months to feel 100% again.

[Guest nini]

Rachel, why can't you just accept that gluten is toxic and your body reacted badly to it, and off of gluten you are much better. I believe that the longer you go gluten free, the better you will feel, and you will become more confident in the positive dietary response. I'm not trying to be mean, I just want to point out that the diet is a healthy diet, you are healthier on it, bottom line, and you don't need to poison yourself ever with a gluten challenge to prove that gluten is bad for you.

Celiac is only one manifestation of gluten intolerance, yes there are others, BUT, as your Dr. said, the end result is that Gluten is BAD and gluten-free diet is GOOD. Don't stress about it!

[Rachel--24]

I believe that the longer you go gluten free, the better you will feel, and you will become more confident in the positive dietary response.

<{POST_SNAPBACK}>

This is what I'm hoping for. I dont cheat nor do I ever have the desire to...I would LOVE to eat all the gluten-free foods and bake goodies and order Kinnikinnick donuts...but right now I react to so many foods I have to stick to "simple". It frusterates me... BUT if these things were to improve as my other symptoms did...I will have the confidence that I'm doing the right thing even w/out an "official" diagnosis. I feel I cant even *enjoy* the gluten-free diet yet.

[Guest nini]

There are a lot of things that I can't eat either, but I enjoy the things I can have. I'm finding some things I can tolerate better the longer I go gluten-free... my daughter on the other hand can eat just about anything as long as it's gluten free.

It's only been what, 6 months that you've been gluten-free? For me it's been 2 1/2 years (with a few accidental glutenings) so I think in time you will feel a lot more comfortable with it all.

[Matilda]

..

[Rachel--24]

Gluten intolerance of all kinds is very poorly understood. Maybe some day in the future you will get a clear explanation of why you were so ill, but the really important thing is that you were clever enough to work it out for yourself without waiting for the years of research it will take for it to be properly understood, and you're getting better now. When you doubt it just think back to how you were feeling before.

<{POST_SNAPBACK}>

Thanks to everyone for your replies. I appreciate all feedback...nothing is too harsh for me and it does help me to deal with stuff as it comes. This is why I love this board.

Matilda,

This is what my doctor told me as well. He told me I've done a great job identifying the problem on my own and making dramatic changes to my health with the diet. I guess I sometimes doubt myself...which I shouldn't ...but hey...I'm not a doctor and never thought I'd be able to overcome what happened to me on my own. But somehow I did. So I guess I should be proud.

Nini,

I'm really hoping that alot of the food sensitivities will lessen with time. I'm really only entirely gluten-free for 2 months because even though I had a plain diet before that I wasnt aware of *gluten* being a problem so I wasnt extra catious at all. I was taking supplements with gluten and stuff like that. I'm hoping that after about a year of healing I'll see more improvement from my lingering symptoms.

[Rachel--24]

When you doubt it just think back to how you were feeling before.

<{POST_SNAPBACK}>

Oh yeah...this is something I do often. I go back to my old journal and I say WOW I've come a long way! I also remind myself of how licking envelopes would cause me to be in tears or how after eating Taco Bell bean burrito I broke out in rash and got very sick. Its funny how easy we can forget these things.

[Guest nini]

I think back to the days where I couldn't leave the house because I couldn't be far from the bathroom. The nights where I didn't get any sleep because I was up all night vomiting til I had nothing left to vomit and just "dry heaved" for hours... The days where I would lay on the couch all day in tears , hiding behind closed shades in a darkened room watching reruns of Matlock and In The Heat of the Night all day long and not really watching the shows...

So, if I still have some physical aches and pains... some occasional heartburn and indigestion... occasional bouts of cramping and diarrhea... I think I can live with those. It is getting better slowly but surely.

And !!!!!! I've lost over 80 pounds in 2 1/2 years just by eating gluten-free!

[4getgluten]

Rachel - I remember reading your early posts, and feeling really bad for you because you were so sick. It seems like now you are doing a lot better – thank goodness. Try not to worry about an official diagnosis. I don't have one either, and it does bother me sometimes. By the time my GI Dr. finally decided to test me for Celiac, I had already been on a gluten-free diet for 6 weeks. Well, I didn't do a gluten challenge prior to the blood test, and it came back negative. My GI Dr. was really pleased to inform me that I didn't have celiac disease and told me to go back to eating gluten. Yeah right - I never went to see him again. Luckily my primary care doctor is great. She told me I’m doing the right thing, and that the diet is very healthy.

I've questioned my self-diagnosis many times in the past 8 months but stuck to the diet anyway. A year ago, I felt so horrible; I was convinced I was dying. I had such painful stomach cramps, bloating and diarrhea that I was worried I had cancer. (Yes, I am worry prone – and yes, I did wonder if it was all in my head). Anyway, after many different tests, my doctors found nothing wrong with me - which is actually good news. Now, 8 months into the gluten-free diet I feel great.

When that self-doubt creeps in, here's what I remind myself of.... There's a guy I work with who is lactose intolerant. I only found out because years ago I sat next to him during a holiday lunch. The poor guy hardly ate anything that was served. Anyway, I didn’t give it much thought. I figured if he says he's lactose intolerant, then he must be. I've never asked him to prove it, or show me some test result that's says so, and I didn’t think any less of him as a result of knowing this. So far, no one has questioned me when I tell them I can’t eat gluten. So, why do I question myself?

I don’t mean to trivialize your illness; I realize that you were very sick. But, the point is, do what’s best for you. I think there's still a lot to be learned about food intolerances/sensitivities. Maybe someday soon, we'll have more information. In the meantime, listen to your body. Don’t let the self-doubt creep in. Just like your doctor said, whether it’s Celiac or some other type of gluten intolerance, the treatment is exactly the same.

I wish you the very best.

[Rachel--24]

Thats great Nini!

My attitude is improving already. Luckily I'm not like this everyday.

If I really pay attention its very obvious. I'm working now. For 21 months I stayed at home...crying everyday, not able to get out of bed half the time, staring at the TV blankly and not wanting to see anyone or go anywhere. I couldnt make it to work no matter how late in the morning they scheduled me...I'd still be at least an hour late if I made it there at all. Disability was my only option. Now I've been back 5 weeks and not ONE morning did I even feel too tired to get up AND I'm going in at 3 or 4 am! I'm loving having a purpose again and I find myself laughing and joking all day at work. No more tears. This would not have been possible w/out the diet. Everyone else can *see* it so thats why I have so much support with the diet but sometimes I have to stop and remember the way it was so that I can *see* it too.

[Rachel--24]

Rachel - I remember reading your early posts, and feeling really bad for you because you were so sick.  It seems like now you are doing a lot better – thank goodness. Try not to worry about an official diagnosis.  I don't have one either, and it does bother me sometimes.  By the time my GI Dr. finally decided to test me for Celiac, I had already been on a gluten-free diet for 6 weeks.  Well, I didn't do a gluten challenge prior to the blood test, and it came back negative.  My GI Dr. was really pleased to inform me that I didn't have celiac disease and told me to go back to eating gluten. Yeah right - I never went to see him again.  Luckily my primary care doctor is great.  She told me I’m doing the right thing, and that the diet is very healthy.

I've questioned my self-diagnosis many times in the past 8 months but stuck to the diet anyway.  A year ago, I felt so horrible; I was convinced I was dying.  I had such painful stomach cramps, bloating and diarrhea that I was worried I had cancer. (Yes, I am worry prone – and yes, I did wonder if it was all in my head).  Anyway, after many different tests, my doctors found nothing wrong with me - which is actually good news.  Now, 8 months into the gluten-free diet I feel great.

When that self-doubt creeps in, here's what I remind myself of....  There's a guy I work with who is lactose intolerant.  I only found out because years ago I sat next to him during a holiday lunch.  The poor guy hardly ate anything that was served.  Anyway, I didn’t give it much thought.  I figured if he says he's lactose intolerant, then he must be.  I've never asked him to prove it, or show me some test result that's says so, and I didn’t think any less of him as a result of knowing this.  So far, no one has questioned me when I tell them I can’t eat gluten.  So, why do I question myself? 

I don’t mean to trivialize your illness; I realize that you were very sick.  But, the point is, do what’s best for you.  I think there's still a lot to be learned about food intolerances/sensitivities.  Maybe someday soon, we'll have more information.  In the meantime, listen to your body. Don’t let the self-doubt creep in.  Just like your doctor said, whether it’s Celiac or some other type of gluten intolerance, the treatment is exactly the same. 

I wish you the very best.

<{POST_SNAPBACK}>

Thanks so much Karen

I think I have the ups and downs with doubting myself mainly because its still fresh for me. Just knowing myself I think by next year I'll be "over it" and I wont care about a diagnosis. Today I said I would test myself with gluten next year but I know that when faced with that option I dont see myself actually being able to go through with something like that. Truth is I'm terrified of the stuff and I dont think thats ever going to change. I also have plenty of people reminding me of how terrible I acted and still act if I'm glutened.

Thanks again for your kind words.