Do You Recommend Biopsy?

[lauradawn]

I recently had all 3 blood tests showing antibodies for gluten intolerance. I tested strongly positive. It doesn't seem like there is alot of benefit to the biopsy other than to know 100%. To me it seems as though there are other ways to make sure. Like a gluten-free challenge. OR From my understanding those blood tests are pretty accurate. I have already started a gluten-free diet, and have made some improvements. In fact today I had a major set back that I havn't seen since my gluten-free diet. I think I cross contaminated soy cheese with reg cheese.

What's your opinion about the biopsy?

[kejohe]

Unless the cheese was pre-shredded and dusted in flour, you should be okay, block cheese (for the most part) is gluten-free.

Regarding getting the biopsy, I would recommend it. Your insurance company will be much more likely to pay for treatments if you are biopsy dx'd. Also, if you have or want to get a flexible spending account you must be biopsy dx'd for them to pay for your gluten-free foods. I'm not sure on this one, but to get a tax break for gluten-free foods, you may also need to be biopsy proven.

[seeking-wholeness]

Laura,

My understanding is that a positive blood test is quite reliable, while a negative blood test is worthless. The reason for this is that the medical establishment has selected its tests to ensure that NO ONE gets put on a gluten-free diet unnecessarily (which seems to be widely perceived as a fate worse than death). The upshot of this philosophy is that many gluten-sensitive individuals slip through the cracks and are never placed on the gluten-free diet at all!

Even a biopsy is unreliable. If you have patchy damage, or if the pathologist is dogmatic and declares that minor damage doesn't count, you could get a "negative" result even with positive blood work. What will you do then?

Improvement on a gluten-free diet is the ONLY "conventional" way to tell if gluten is a problem for you, in my opinion. I also put a lot of faith in Open Original Shared Link stool and gene tests, although financial constraints have so far prevented me from taking advantage of them. I simply have a good "gut" feeling about them, and I trust my instincts.

I hope my input helps as you decide how to proceed, and I am glad you are seeing improvement on the gluten-free diet. Good luck!

[Guest gillian502]

I would strongly recommend the biopsy, simply because the medical profession considers it to be the only "gold standard" in testing for this disease. Whenever I see a new doctor and mention I have celiac disease, the very first question they ask is , "How were you diagnosed?" When I begin to reply, "First by blood work, then by biopsy," I don't even get out the full sentence before they interrupt me, asking , "JUST by bloodwork? Were you biopsied?" Then I'm able to complete my sentence and tell them that in fact I was.

So, you'll spend the rest of your time defending your choice not to be biopsied from here on out, therefore, might as well just do it. It's really quick and easy, and totally painless. I was nervous during mine because I have a problem with my heart rate and blood pressure and feared the sedation, but I did fine. Unfortunately the bottom line is most doctors don't take celiac disease patients seriously until they are biopsied... Good luck in whatever you choose.

[YankeeDB]

On the other hand, if you DON'T get biopsied you won't officially have "celiac disease" and therefore be a candidate for refusal of life insurance--just one more twist in the maze we face....

[texaswendy]

This is my first time on the message board!

I went on the gluten-free diet for 7 weeks and was feeling GREAT. I went to my doctor recently to ask about testing. He recommended a test that he said was new (about 6 months old) and very accurate...Part of the blood test is for the anitbodies and the other part is to test if i carry the gene for celiac. (the gene part is expensive, but my insurance is going to cover it) In order to do these tests, of course, i have to go off the diet for 3 weeks. I am in the middle of doing that right now. He thought that how I felt on the diet was the ultimate test, but i really wanted to know for my own sake what the blood work would say. I say, if your doctor isn't taking you seriously, than find one who will!

i have to admit I am kind of enjoying eating the foods are forbidden, but I will be happy to get back on my diet immediately after the test and continue feeling great!

Good luck to everyone.

i was really happy to find this message board.

I am, too, worried about the impact of a positvie diagnosis. One friend said that my insurance would put me in a high-risk pregnancy category if I decide to have kids...

[kvogt]

The official diagnostic path for celiac disease is 1) positive blood work, 2) positive biopsy, 3) improvement on a gluten free diet. I opted out of the biopsy because my doctor couldn't tell me anything he would do differently with the information. If you go gluten-free for some months and then ingest gluten, you will KNOW quite quickly that you are gluten sensitive and should not consume it.

If the Hippocratic oath dictates that diagnostic methods must vary from least to most invasive, why the devil do doctors perform a biopsy before attempting the gluten-free diet? Would you rather pay a lot of money to be sedated and cut on - with all the possibilities of complications and medical error - or not eat something for some months? I didn't have any trouble making my decision. And one bread crumb can prove I was right.

[Guest shar4]

As usual, I have to add my comments. In my case, the GI didn't know what was going on, and her solution was to do endoscopy and colonoscopy. Looking back, and reading what I have read here, it is to her credit that she recognized it immediately, saying, "This looks like Sprue."

She took several biopsies to confirm, and it was indeed sprue. However, she did have bloodwork done to confirm that it was "Non-Tropical Sprue"

Her exact words, though, were that the Biopsy was the "Gold Standard" of diagnosis of this condition.

The story of my life... to have things done backwards.

Regards..

[lauradawn]

Thanks so much for all the opinions. I went ahead and scheudled a biopsy. Unfortunately since I have been gluten-free they want me to wait 1 month. So well see.

Any other comments about the biopsy would be helpful though. Im still learning as I go.

[gf4life]

Hi lauradawn. I assume you mean they want tyou to go back on gluten for a month, prior to the biopsy. Is this what they told you? You do need to be on gluten, but if you have been gluten-free for a while it may take more than a month to show damage bad enough for them to say it is Celiac Disease. I was back on gluten for two months prior to my biopsy and eating more gluten in a day than I used to eat in a week, and my biopsy still came back negative. I don't want to discourage you, but if your symptoms went away on the diet, and come back during your "gluten challenge" then that is pretty much a clear answer in my mind. I hope you have better luck with your biopsy than I had.

God bless,

Mariann

[plantime]

Sorry, folks. After being gluten-free for two weeks, I ate one roll. Big Mistake!! Whew! No biopsy or blood test is worth that agony! I will just have to do without the "Gold Standard!"

~dessa~

[Guest jhmom]

dessa:

I don't balme you, there is NO way I would begin eating gluten again to satisfy doctors or anyone else! As Kvogt stated and it is so true....

The official diagnostic path for celiac disease is 1) positive blood work, 2) positive biopsy, 3) improvement on a gluten free diet.  If you go gluten-free for some months and then ingest gluten, you will KNOW quite quickly that you are gluten sensitive and should not consume it.

[lauradawn]

ya, the Dr's said that I needed to be on gluten for atleast 1 month before the biopsy. I can appreciate the reasons for not doing it. MY long term thinking, is as mentioned above from a couple people that there are some state aids, and tax benefits if proven celiac. I have 2 year old twins, that have had some food allergies since birth, and there is a good chance they could end up with it as well. Therefore since there is a possibility that my entire family could end up gluten-free, those benefits may pay off over the years. I would hate to go a year, feel tons better, and then decide that we should have done it. It's been challenging trying to determine what I should do. But, like I said I would hate to regret not doing it now, and end up doing it later, after I've b/c gluten-free for good.

[flagbabyds]

i would have the biopsy becuase if you ever want to help in any research then you have to be biopsy dx

[gf4life]

I went ahead and did a two month gluten challenge and had the biopsy. It was negative (according to my doctor) but I figure that it at least gives us a "before" picture of my intestines. And years down the road we may choose to do another biopsy (while gluten-free of course) and it may show drastic improvement. Who knows. I just figured it was better to have it than not, but I would recommend you have it before trying the diet, since going back on gluten after being gluten-free for a while is the worst. My reaction was so bad that after two months gluten-free I am still experiencing symptoms, that had previously gone away after a week gluten-free before the biopsy.

God bless,

Mariann

[lauradawn]

Marrian:

How long ago did this happen? how long were you gluten-free before doing the challenge?

I was gluten-free for 2 weeks. Noticing some signifcant changes. Have been back on gluten since Monday. Of course my symptoms are back now. Hoepfully I dont regret this decision either.

Unfortunatly I was not crazy about the Dr that I saw. Im still searching for another Dr in the meantime, and hopefully something will turn up.

Thanks for sharing your story. Im brand new to this whole scene, so Im sorry you've probably given your story a million times.

Laura

[gf4life]

That's okay Laura, I don't mind telling my story again if it helps someone.

I had been accidently gluten-free for two months at a time, when I went on a high protein/very low carb diet back in 1998 and again in 2000. I would feel a bit better, lose about 30 lbs and then start to feel really tired. I would add a few more carbs in and gain all the weight back. I was slowly getting sicker (I've had celiac disease symptoms since I was 4 years old) and after three kids I was very ill. I had my gallbladder out in 1999. I was still searching for a way to lose weight and keep it off, but nothing seemed to work for me. I came acrossed the Eat Right 4 Your Type blood type diet and it sounded good to me. It said for me (blood type A) that I needed to avoid dairy and wheat. Well I live in a small town and the only bread products I can get are made from wheat. So for two weeks I was (again accidently, at this point I didn't know what gluten was) gluten free and dairy free. I had never felt better in my life. I lost 5 lbs and was full of energy. After two weeks I traveled out of town and was able to get to some healthfood stores. I got the alternate grains that were acceptable on the diet, but unknown to me, contained gluten. I went home and made a loaf of bread and got the worst stomachache I had had since my gallbladder attacks. I went online to research wheat free bread making, since I was sure I had done something wrong. I came acrossed on of Bette Hagmans Wheat-free Baking Cookbooks, and in the into she was taking about gluten and Celiac. I had never heard the word Celiac before, but the symptoms of her illness sounded like she was talking about me, so I started searching for info. I found this site and others.

By the end of two weeks doing in-depth research I knew for sure that I had celiac disease. I was back on gluten since the tests are inaccurate if you are gluten free. I started collecting info and went to my doctor. They sent me to an allergist who knew nothing about Celiac or how to test for gluten intolerance. I was (after a year) sent to a GI who refused to test me for Celiac (since I was overweight) and insisted on testing me for everything else under the sun, before even conscidering it. Halfway through the testing I got sick of him and his assistant, and quit seeing him. I was very upset since he had done an endoscopic exam and had not bothered to biopsy my intestines, even though there was inflamation in the duodenum area and my intestines looked "slick" to them, what ever that means. So I wainted a few months and went back to my doctor. They referred me to another GI for the purpose of finishing the testing, but they went ahead and ordered my celiac panel bloodtests first. I tested negative on the blood test, but they never checked my total serum IgA and so that pretty much negated the results. ( I do show signs of being IgA deficient.)

My new GI refused to conscider celiac disease based on the negative blood test. I ordered the Enterolab tests and they came back positive on both the fecal gliadin and the fecal tissue transglutaminase, as well as the main gene for Celiac Disease (HLA-DQ2). (It also showed I was intolerant to dairy, casein to be exact, and I remained dairy free when I went back on gluten.) I took those results back to my GI and she refused to accept them, but she did agree to do the biopsy. I didn't think she would agree to the biopsy, so I had been gluten-free for two weeks prior to seeing her. Which was an almost instant relief of symptoms. So I went back on gluten and scheduled the biopsy for two months later.

I started consuming way more gluten than I would normally eat. I developed a blistery rash on my hands and palms and it got worse on my scalp (where I had previously had the rash) and started to spread to my legs and forearms in patches. I had horrible bloating and gas, and the diarrhea came back, with occasional constipation. I could no longer digest fruits and veggies and I was so tired and couldn't hardly think. The brain fog was awful. And the acid reflux came back. I tolerated the symptoms and suffered for two months, since I really was hoping the biopsy was going to be positive and I could show all my doctors that they were wrong. I knew there was a chance it could be negative, but still felt it was right to do since I wanted a biopsy of my intestines before I was gluten-free forever. I went gluten-free the day of my biopsy and the rash cleared up within a week. It came back a few times during the first few weeks during some gluten accidents, but I only have the scars left on my hands and they don't feel like they are being poked by a thousand needles anymore. The bloating went away almost immediately and actually hadn't been too bad, since I wasn't on dairy, but the inability to digest fruits and veggies was worse than ever. I started taking gluten-free digestive enzymes, they helped a lot and after a few days I was able to eat a lot more. I have gotten mostly better. I still get an occasional sore stomach and loose stool, but I can think more clearly and my headaches are less. I can digest most foods without the enzyme supplements and I don't feel as tired all the time. My iron level, which was always borderline before, was high enough to donate blood last month. Although I was quite pale for about two weeks afterwards.

I just wanted to say also that I have since read in a great book called "Dangerous Grains" by James Braly and Ron Hoggan (I highly recommend it), that it can take some people up to 5 years to develop enough damage in their intestines to diagnose celiac disease after they have been gluten free. It only takes three days for the lining of your intestines to heal (much longer for the symptoms to go completely away though), so even after two weeks there is a chance that you may test a false negative. So don't rely too heavily on the test results. You need to go by how you feel on the gluten-free diet. I know how I feel and I also know that the 4 times I went gluten-free (accidently and on purpose) for a total of 5 months was enough to alter any future test results. The Enterolab tests are much more sensitive that the other conventional tests. Even the top research doctors in Italy are developing their own version of the stool antibody test, since they now realise that so many people who are gluten intolerant are slipping through the cracks.

I just recently sent off my kids test to Enterolab (after getting inconclusive blood tests) and I just got the results today. ALL 3 of them are gluten intolerant and dairy intolerant, but only one has the same gene as me and can develop Celiac Disease. The others are gluten sensitive and still need to be off gluten for optimum health. I am so relieved to know that I can help them to be healthier by feeding them the same way I am eating. I hope this helps.

God bless,

Mariann

[lauradawn]

Mariann,

Wow! thank you for that story. That's amazing. It's really sad to see how many people suffer with this longer than they should have to. Some maybe even forever. I am thankful my Dr tested for the intolerance when he did. I have been back on gluten for 1 week now, and although my symptoms are not as bad as they had been originally I still have massive bloating, gas and diarreah. Thad had all gone away during my gluten-free diet, and those are issues I had been dealing with for years. I am very pleased to see the affects of the gluten-free diet so quickly. After reading your last message the other day I started questioning the biospy again. My main reason for doing it was to prove it if needed to qualify for the tax benefits....blablabla. However after doing more research on those benefits have realized that those benefits are not very likely to even affect me. I would have to spend an enormous amount of $ on special breads, to even reach the threshold of qualifiying. Therefore, my husband and I both agree, the biopsy does not make as much sense now. The only benefit that I can honestly think of at this point, is just to hear a Dr SAY what I already know.

I am reconsidering my biopsy, and will probably go gluten-free again this week. I don't see a point in feeling bad, for a dr to tell me something that I can figure out myself. I wish things weren't so complicated!!!

Im worried about my little boys. It will be interesting to see what their blood work comes back as.

My blood work all 3 tests were greater than the #25 that was need to show positive. 107, 55, and 46 or something like that. So I will probably go off of that along with how I feel. I actually do not feel as bad as I thought. Before going gluten-free i had diarreah 3-5 times a day. someimtes I felt bad and sometimes I felt normal but with diarreah. Then again when you have been living with it for so long, that becomes normal I guess. Anyway, I do have the diareah back but it's not as severe. I hope this means that I have not had to far of a setback.

Anyway, I guess well see

Laura

[bigapplekathleen]

hi mariann and all -

I have been gluten-free now since Sept 1 and wheat-free since Aug. 1. I have not had a biopsy yet, though my blood test results were positive for celiac disease back on Aug. 31st. I am so much better on a gluten-free diet. you cannot even imagine the difference! I have lost 26 pounds total and have gone from size 14 to size 10 (on my way down to an 8). I found that even when I was eating gluten-free foods, i still didn't always feel great, so I gave up dairy and some other foods and ate the PALEO DIET about 90% of the time starting in January. That's when most of the weight started to come off. I have lost 14 or 15 pounds since Jan. 25th.

I had an appt with a very famoud celiac disease gastro doctor, but the wait was 8 months. I got my appt moved up a couple months, but this week they called to cancel it. He will be out of town. So I took some recommendations of other celiac disease patients in my area and called another really good gastro, who had an appt available within the week. I am seeing him Friday and hope he doesn't want me to do a gluten challenge like Mariann went through. i was warned about the first (famous) MD that i would have to eat high levels of gluten for one month. It is just not possible. I get sick from even the most minute particle of gluten. I cannot imagine eating whole-wheat bread again. I would love a slice of pizza, but let's get real. I am not going to do anything STUPID, and eating gluten is STUPID. It makes me very very ill. I was nearly dead two years ago from complications and repeated staph infections. I lived off of antibioitics from age 8 til age 34 - on average of 8-15 prescriptions per year. In 2001, I took antibioitics continually for 6 months. It still failed to keep me well. Now I have allergies to nearly all of them and have developed a latex allergy, which cross-reacts with silly things like bananas and some nuts. My food allergy tests last summer revealed 21 allergies out of 90 foods tested. I reacted to EVERY environmental allergen tested.

HOWEVER...since going OFF of gluten, I haven't needed allergy pills and rarely have any trouble. I haven't been sick once...until this weekend, when I caught the virus that's going around out here. I ended up with a 102 fever on Friday. But it's the FRIST TIME i have been sick since August. I am just amazed.

Anyway, I am hoping the new gastro won't expect me to do anything stupid. Hopefully, they can DX celiac disease with a biopsy now, even though I have been gluten-free since Sept 1st.

Kathleen

[lauradawn]

Hi Kathleen.

sounds like your in the same boat as me. From my understanding it is very unlikely that a bx would show anything at all. If you are determined not to go back on gluten, do not easily allow your Dr to pursuade you to have the biopsy. It will most likely be negative no matter what.

Let us know what happens

[warpspeed]

Hi All. This is my first time on message board. My mother tested positive (she's 75) for celiac disease with a blood test. She's been on gluten-free diet for 2 months with no improvement. What do you think she should do? She's allergic to soy and lactose intolerant also. Thanks for being there.

[YankeeDB]

Warpspeed, I'd suggest talking to her doctor(s) and also re-evaluating her diet for hidden sources of gluten. Medications often use wheat as a filler so check those out very closely (pharmacy can usually research these for you). Also look at OTC drugs she may be using. Consider stamps and envelopes (wheat paste) and communion wafers. In essence, you have to look at EVERYTHING that crosses her lips.

Another thought is that at her age it will take longer to heal. If she has had this for a long time, she may be malnourished and her immune/recovery system could be compromised.

Are her symptoms improved at all? If so, you know you're going in the right direction. But, most of all, talk to her doctor and learn as much as you can (and have yourself tested if you haven't already!) Good luck!

[Guest TESTinME]

I don't see why a biopsy is necessary when you have a confirmed positive blood test for celiac's. It just seems like something that would cause extra discomfort and provide no real benefit to me....

Then again, I am self diagnosed so I guess I am biased. I was told I had IBS but was not satisfied with that diagnoses. When I went off wheat, my symptoms improved dramatically.

[mom]

I was lucky to have a doctor that believed in step by step testing. I was so ill that he kept ruling out the obvious by testing up to the point of doing more blood work and eventually a biopsy to confirm my non-tropical sprue conditon. This was just in a matter of two weeks, so I can't complain about the time frame for diagnosis.