Diagnoised Celiac But With No Biopsy

[weebitts36]

I recently was diagnoised with celiac disease 2 weeks ago. My doctor only did so through several blood tests. Everything I read refers to a endoscopy for a biopsy to confirm this diagnosis. My doctor has me scheduled for a colonoscopy. Now my only syptmoms were constipation, extreme bloating, and occassional bloody diahera. All my friends tell me I need a second opinion before I make such a dramitic life change of a glutten free diet. Amyone have any input abiut this?

[visions20]

Dear Weebit36 , I was diagnosed with celiac about one year ago. I am a senior citizen and have enjoyed a healthy life. I go routinely for an annual physical each spring and the only thing different this time was I was slightly anemic and iron difficient. I had a colonoscopy and a endoscoptic exam of the stomach.When the doctor saw that there were no cilia in the duodenum he took a biopsy which confirmed ciliac. The blood tests afterwould also confirmen it.I had no symptoms.I contacted the celiac asso and researched it on line.I went on a glutten free diet and stuck to it and the biopsy a year later showed regrowth of the celia and I am no longer anemic or iron deficient. i have never had any distress or any other symptoms. I suspect I could eat glutten with no problems as I have done in the past. I know what it could lead too so I just remain glutted free. It is really not bad once you set your mind to it.

As to your question the absolute positive diagnosis is a boiopsy. Try to find a doctor who is knowledgeable in celiac. I called the local celiac society and asked them for a recommendation of a celiac knowledgable gastroenterologist . They were very helpful. I was shocked when I found out I had it as I had absolutely no outward symptoms. I was also glad that I cought it before I developed bad problems. I hope I have been helpful to you.Good luck.

[Lily]

Weebits36,

I saw a specialist for Celiac and he did the endoscopy with a biopsy. It was painless but confirmed the diagnosis. A colonoscopy wasn't suggested. I would listen to your body instead of your friends. Yes, it is a huge change in lifestyle, however, what's the harm in trying the diet for a short period to see if you feel better?

I wish you much luck.

Lily

[visions20]

Lilly

Celiac is serious business. I have no symptoms but stay on the diet.It is a hereditary condition and can lead to a very big list of major problems including cancer of the colon.My feelings is not to take a chance as I like life and like being healthy. Please contact the Celiac Society of America and find out about the disease. Good luck.

Visions20

[Guest LisaB]

Visions20,

I think Lily is saying the opposite of what your thinking she said. I see her point to be, that there is no harm in dealing with your life in such a way as to assume you have Celiac. If your friends are telling you that you have to have a diagnosis before trying the gluten-free diet because it is such a huge life change, they are not realizing that the diet isn't that hard and it is better to do the diet than not. Make sense?

I'm probably about as clear as mud here....Lily, where are you...

Lisa

[Lily]

Hi Visions20,

Yes, I know celiac is a serious business. I'm 35 and been sick all my life. It was my nutritionist who suggested 6 months ago that I go gluten free before I had an actual diagnosis. I didn't need the dignosis to tell me that she was right. LisaB is right about that I meant to say "assume you have celiac", no matter what your friends say. (I know what I mean, but don't always say it like I want.....I've still got that foggy brain thing going on ).

I too like life , and my biggest concern has been about the huge cancer risk that celiacs have. They say it takes decades to develop, but I've had symptoms since I was a baby and I've got 3 and 1/2 decades under my belt.

I have researched enough on the subject this past year to write my own book so I do know about the disease.

I was trying to offer some support about Weebits and his/her friends, I don't think they understand us unless they've been through it on their own.

Weebits, those biopsies seem to be fairly unreliable. Just listen to what your body is telling you, try the diet and see if you notice a difference. If you feel the need for a 2nd opinion, at least now you have an idea on what to have them test for. Because I had a kidney stone in the spring, all they wanted to run tests for intially (4 months) was kidney function testing. It's a long and frustrating road, but I hope you find the support you need here. It has helped me tremendously.

I'm truly sorry if I didn't communicate myself as well as I should have and caused some misunderstandings.

Here's to better health!

Lily

[granny]

Weebits36,

I saw a specialist for Celiac and he did the endoscopy with a biopsy. It was painless but confirmed the diagnosis. A colonoscopy wasn't suggested. I would listen to your body instead of your friends. Yes, it is a huge change in lifestyle, however, what's the harm in trying the diet for a short period to see if you feel better?

I wish you much luck.

Lily

Lily,

Are you saying that your doctor only did the endoscopy and was able to do the biopsy that way?? I thought that my doctor had indicated that he could do that but hadn't heard anyone else refer to the biopsy being done that way so wasn't sure. When my doctor tried to do the biopsy when doing the colonoscopy, he wasn't able to get into the small intestions because of a previous surgery so the effert was a waste.

Thanks for any help. Granny

[Guest jhmom]

From my understanding a colonoscopy is to view the large intestines and "some" of the small. The doctors can take a biopsy during a colonoscopy, mine did but my colon was "twisted" and he wanted to make sure I did not have colon cancer but I have never heard of Celiac Disease being diagnosed this way.

An endoscopy is where they put tube down your throat and can take a biopsy of your small intestines to check for damaged villi.

[Susan123]

I have had a couple of colonoscopies in my life as well as an endoscopy. My impression from my specialist is that the biospy is taken in the small intestine because that is where the damage is most prevalent. They are able to see the nature of the villi to see if damage has set in. They often recommend a colonoscopy to rule out other intestinal damage (IE Chrons, colitis etc) or damage from non-treated Celiac. In order words it gives you a full picture of what is going on. From my experience with the Colonscopy it very rarely gets to the point of the small intestine hence the endoscopy is needed. My suggestion is to have them both done at the same time like I did. If you have to go thru the prep you might as well do it all at once. Also, during an endoscopy they will put you under so you wake up and don't even know it happened. The only thing you will probably experience afterwards is a mild sore throat (from the tube- endoscopy) and an active stomach sound from the gas they use to illuminate your colon during the colonoscopy.

[Susan123]

to clarify above: The best way to diagnose Celiac is by taking several biopsies in the small intestine. This is done with an Endoscopy. The colonscopy gives the full picture.

[granny]

Thanks for the replies. It's wonderful to have a place to ask questions of people who have more experience with these things. I had gotten the wrong idea about this. My doc. had tried to do the endoscopy but had not put me to sleep and I couldn't swallow the tube so he was only able to do the colonoscopy. I really wish he had put me under because now I have to do it again and still have no answers.

Granny

[Guest shar4]

I had bot colonoscopy and endoscopy done at the same time. The only problem was that I was AWAKE for both. Trust me, not the way that I wanted to do it, but anyway. colonoscopy was fine but endoscopy was a mess. Doctor stated that everywhere that she looked was "oozing" and inflamed. I have to have a repeat endo, in a few months to see if things are looking somewhat better.

I certainly feel better, and remain optomistic that things will look better too.

Thanks for all the info.

Sharon

[eRinLuCyO1]

I recently was diagnosed with celiac disease in December, however I had a negative endoscopy. Over the course of several months my GI doctor gave me the blood test for celiac disease twice, and both times it came back conclusively positive. My doctor told me that even though the endoscopy came back with a negative biopsy she was sure that I had celiac disease. My mom doesn't know whether she wants to trust this or not so were sending the reports to another GI, however personally I feel that I probably do have it; I've had a lot of the symptoms for 2 years now. Anyone have any input? Thanks.

Erin

[bigapplekathleen]

HI there,

I am also a diagnosed celiac who only had blood tests and no colonoscopy or endoscopy/biopsy. I have responded so well to the gluten-free diet, though! When I have gluten now, I get horribly ill within an hour. My lief has been dramatically changed by following the gluten-free diet.

however, I will probably have to get the biopsy done soon. That will mean a month of eating gluten, which i am not sure I can or want to endure. At this point, i don't want to do annything that will jeopardize my health again.

If I had it to do over again, I would have had all the right work done before I started the gluten-free diet. Hindsight is always 20/20, right!?

kathleen

[aldociao]

Kathleen,

I'm confused. Please unconfuse me--I'm sure I'm missing something--the elusive obvious, I guess. I'm a self-diagnosed celiac disease since about 7 weeks ago, and I don't understand why so many on this board, like you, feel the need to have your obvious condition medically confirmed. Why put yourself through the pain of a "Gluten Challenge," as I think they call it, just to confirm what you already know?I can understand if you have doubts, but in your case--having had your "good"

gluten-free exeriences and the blood tests--and apparently in many others, it's as plain as feeling good compared to feeling rotten. And from what I've learned here, all the tests, including supposedly the best one, biopsy, might not accurately reflect whether you do have celiac disease given the often patchy inflammation of the intestines.

Frankly, I don't get it. I thought, well maybe it's for insurance coverage, but since this is a self-managed condition--after the testing is over--getting a medical diagnosis for insurance reasons seems not to apply here. But then, I don't know, are the tests expensive? If so, that is even more reason, as I look at it, not to have them done, especially when you know what the results will be, or should be. And if the results are negative, let's say, would you go off being gluten-free? I don't think you would, no matter what the doctors or the tests are telling you, knowing that your body is sending you a very clear message to stay away from gluten. What am I not getting? --Aldo

[Susan123]

I only know in my case I need confirmation. Too many other ailments can cause similiar symptoms. Yes I feel better but am I ignoring the real problem that could come back to haunt me 10 years from now. I also have a wheat allergy. So if I eat wheat am I damaging my insides or just having an upset stomach for a couple of hours. BIG DIFFERENCE. I think as Americas are options are endless and we feel we have a right to know what effects our body and what does not. Look how little information/ knowledgeable doctors are available to us that know Celiac. What is research going to tell us down the road 5 years, 10 years and so on. We will never know unless we search for answers. To search for answers is to get the latest tests done. Don't you think that the only way doctors will educate themselves on this disease is if people stand up and requests these test. Without the tests/records the disease is hugely underestimated therefore not important to the medical field.

PS A lifelong comittment to a very restrictive diet requires proof in my opinion!!

[seeking-wholeness]

Aldo,

There are many reasons why a person would want conclusive proof before committing to a gluten-free diet. One of these is that if you change your mind AFTER going gluten-free, you would have to do a gluten challenge to get (possibly) accurate results, thereby undoing all of the hard work you had just put in to begin healing! Other reasons include laying lingering doubts to rest (it's absolutely amazing how quickly humans forget how AWFUL they felt once they start to feel better--just ask any woman who's had more than one baby!), convincing skeptical family members (who can make life incredibly difficult for a self-diagnosed celiac), establishing the diagnosis for legal reasons (e.g. requiring a disbelieving divorced spouse to provide gluten-free food to a celiac child during visitations), proving a family history so doctors will agree to test your children, and educating the uninformed medical establishment and promoting research on celiac disease for the benefit of future generations.

All that said, I am not one of these people, though I certainly understand and respect their decision. I DO sometimes wish, however, that I had had the opportunity to be tested conventionally before the diagnosis walked up and tapped me on the shoulder and said, "Hi. I can explain everything!" After that point, given that I had been nearly gluten-free for almost a year and could not get accurate test results without gluten-loading, NOT going totally gluten-free immediately would have violated my personal ethics--I don't believe in deliberately damaging my body just to prove a point. I realize, too, that not having an official diagnosis may make my life difficult in the future, but I hope this never happens!

I hope this helps clear up your confusion!

[gf4life]

I agree with you Susan,

We do have to stand up and make the medical profession take notice. I am at the end of my gluten challenge right now, only 3 more days! It has been hard, but I do feel there are benefits to having a confirmed diagnosis. I have been sick all my life (I'm 31 now) and I have been told it was all in my head, or stress related indigestion, 16 years of IBS and the list goes on. I KNOW I have celiac disease, but I don't want to ever have any doctor look at me and treat me like I am a hypochondriac again!

It makes me very mad that I was ignored (and my children were also ignored) for so many years of seeking relief from the symptoms. If we don't make the doctors learn and show them the truth, it may take decades longer for them to "catch up" to what we all know about Celiac Disease.

In many cases Celiacs have other ailments going on (mostly from untreated celiac disease) and once they are gluten free they need to continue to see doctors for these ailments that are not fixed by the diet. This can cause many people to metaphorically run head on into a brick wall if they are self diagnosed...

Mariann

[aldociao]

Thank you all: Susan, Sarah, Mariann

You have convinced me, clearly and persuasively, that it does make sense to be tested. Some of the reasons given are obvious and I should have known about them, but several, like possible legal issues and, especially, the need to educate a mostly disbelieving and woefully celiac disease-ignorant medical profession took me by surprise--shouldn't they be learning about this in med school, and not from their patients? But, after a moment's reflection, I now see that this is probably the only way they are going to be educated about this condition. That thought alone would be enough to get me tested.

I wish I had tested before going gluten-free, but I agree here with Sarah's feelings. I don't want to knowingly subject my body to what is harmful. We do enough of that, unknowingly--and sometimes not so unknowingly--every day. I do understand, however, that there are situations where one's best option is to go off being gluten-free to prepare for testing because of the many good reasons you have given. Thanks again, for helping me to get it, finally. --Aldo

[mg5676]

Aldo, I am with you!!!! You said exactly what I was thinking too! I think that we as a society have been trained to get medical advice & always believe that the doctor is right, & that is just not the case a lot of the time.

Your body will tell you how you feel, that is the best way of knowing what is right for you & what is not. It's so simple & amazing. Your body doesn't need gluten whether you have celiac or not, it's actually quite harmful to the body even without an intolerance.

I too went undiagnosed since I was a young girl, and went through many doctors & unneccesary tests before I finally got the correct diagnosis. I refuse to have an endoscopy done, I already had the colonoscopy done a year & a half ago & they thought I had colitis, which it took me until just recently to find out that I in fact have gluten intolerance. A gluten free diet has made me feel healthy again, in only a month's time! Why keep going to doctors, when they only have very limited knowledge about this, when your best resource is your own body?

If you went gluten free even for 2 weeks, and then had gluten, your body would let you know how awful that is for you very quickly, now that is a diagnosis! Maggie

[Lily]

I too decided to have the confirmation on something I already knew. My nutritionist had a fit that I was willing to go back to the gluten challenge. Personally, I am tired of the doctor treating me like there is nothing wrong with me. I want hard proof in my medical records so we can pin some things down quickly if needed should I become ill with something else.

Granny, sorry it took me so long to notice this post. The message board is growing so I'm not seeing all the messages. Next time feel free to shoot me an email. I think you already got your answer, but yes, you can be confirmed by the endoscopy and they did several biopsies in my small intestines as well as my stomach I believe. I know from reading the reports that they took at least 3 biopsies in my small intestines. Best of luck.

Lily

[kvogt]

I chose not to biopsy. The diagnosis path for celiac disease is 1) blood test, 2) biopsy, then 3) improvement on a gluten-free diet. I don't understand why it is better to perform an invasive procedure, involving sedation before trying a diet change. There are no other diseases that improves on a gluten-free diet. Or that proves itself, once gluten-free for some month, when you ingest gluten. GI doctors can't make any money off of celiac disease, but they can make plenty by performing surgical procedures.

[gf4life]

kvogt, I know it is insane the way they have the diagnostic process set up for celiac disease, but at least it is not as bad as it used to be. They used to do a biopsy first, then go gluten-free for 6 moths, then a second biopsy, then a gluten challenge for 6 months , and longer if symptoms did not return immediately. All for a diagnosis, which should have been apparent by the absence of symptoms during the gluten-free diet!! I was willing to accept the gluten challenge for myself, but not for my kids. I am an adult and fully aware of what I am doing (although I still think it is insane to purposefully hurt oneself for a diagnosis, yet that is what I am doing...) , but I do not want to put my kids through the same. I am very thankful that I found a doctor for them who will do the gene test first and the biopsy, only if absolutely necessary. Once they are gluten-free I will never put them on gluten again for a challenge. So that is another reason why I am thankful they have a doctor who will test them properly. He doesn't want to put them on a gluten free diet, unless they need it, and he doesn't want to miss the diagnosis if they DO have celiac disease. So I know that he will do everything he can to know for sure one way or the other. If only more doctors would feel that way. My doctors are the opposite, they insist on putting me through every invasive procedure and inaccurate tests before even testing for celiac disease...I have fought for too long, and now my biopsy is tomorrow. This is my last day on gluten and I am so relieved. I am just praying that the doctor will find the damage in my intestines tomorrow, since she will never be able to check again, as I will not go back on gluten for all the money in the world!

Well sorry fo the rant. The past two months on gluten have been awful, so my mind is pretty messed up, along with my entire digestive system...

God bless,

Mariann

[Guest shar4]

Hi there, Thought I would add my 2 cents worth. I went to a Gastro, had mutiple biopsies taken during the endoscopy, and then, even though the biopsies confirmed the diagnosis, she had blood work done to confirm that it was "non-tropical sprue". Even though she agreed that it could not be tropical sprue, since I didn't go anywhere to contract it. (FLorida isn't considered a danger zone for this).

All I know is that I DO have it and I feel better without the gluten.

Thanks

Sharon

[Guest shar4]

Maribet, I do hope you get to feeling MUCH better.

sharon