Biopsy Accuracy

[Guest mesasmom]

Hi everyone! This is my first post here and I apologize right now if it is too long. There is just so much I am unsure of and so much going on with my son that it may get a bit lengthy.

My son has been having health issues since he was 2 weeks old. He has been diagnosed with sever asthma (hospitalized for it), sever reflux, had ear tubes placed in oct because of 10 ear infections in the first year of his life, had a suspected milk allergy that never showed on any tests so deemed lactose intolerant and still had diarhea 5 to 6 times a day. I have a friend with celiac so when everything else failed to help him...meds, surgeries, dairy free diet.....I asked 3 of his doctors to test him for celiac. All 3 responded no, because he did not look like a celiac baby. My son was 9 1/2 pounds when he was born so he is a good size baby at 22 pounds....but still is no where near the 30 pounds that he should be. I finally made it to the Ped GI who's first words after hearing his history were "Has he ever been tested for celiac?". They were the best words I had ever heard. The blood tests however came back negative and because of his age they were not a reliable negative. Three weeks ago today I started him on the gluten free diet to see if there was any improvement. The improvement with him seemed miraculous to say the least. By Tuesday he was down to one BM a day and by Friday they were solid and he had to work to get them out. ALL of his other symptoms went away almost instanteously.....his wheezing, his laryngomalacia, his reflux, his constant runny nose....it all went away. He also starting sleeping through the night for the first time in his life!!! Which meant I slept through the night. The Ped GI has now scheduled the EGD for the 24th of this month and I started him on gluten again on Friday. Since Saturday morning his diarhea has been constant as well as his runny nose and his relfux and his congestion. He has not slept through the night and today his wheezing has been so bad that he is requiring treatments again and was turning blue. It is killing me to be doing this to my son. I just keep telling myself it is only 2 weeks. My question at this point is how reliable are the biopsy results? I pretty much know that no matter what they show my son, for one reason or another, cannot have gluten as a part of his diet. But what should my next step be if the biopsy comes back showing no damage? Is there anything else I should be considering? Also, how much gluten is necessary to be in his diet to make the damage noticable? I have been giving him gluten every chance I get...every meal. Again, I apologize for the length of this post, I just wanted to get it all out there.

Thank you!

Amanda

[4tomorrow]

I am far from qualified to answer this. But........if he felt better then I would stick with the diet. I can't answer for how the biopsy will come back.

I am so sorry that you have to go through all of this with such a young child.

Good luck, and keep us posted.

[TCA]

Your story sounds so much like mine with our son. He had 2 negative biopsies at 15 mos and 3 yrs. He had inconclusive blood work, see below. His Ttg and EMA were negative, but that was probably because he didn't have severe damage yet. The biopsies showed irritation. He started on a gluten-free diet the first of the year and is soooo much better. It's miraculous.

You need to remember that the reading of the biopsies is doctor dependant too. Another doc may say celiac and another may say it's not. Keep in mind that if the diet is working, the tests are inconclusive under 5. WE finally did the celiagene test with promeheus and he had both the celiac genes, which I recently read means a definite diagnosis. The diet was enough to tell, though and we could have saved the 400.00 for the test. It did give us peace of mind, though.

Good luck and let me know if you need more details.

TCA

[Lisa]

Hi and welcome:

I have not had children with celiac disease so I am not your best to answer you question, but there are many here who will help you with your questions.

I believe that as long as his symptoms, which you have described as present continue, if celiac, the biopsy will indicate celiac. The biospsy is considered the gold standard to testing for Celiac Disease.

I am distressed for you as a fellow mother, that we have to inflict things upon our children that make them ill to know how to cure them. I know that this has been very difficult for you and I am sorry.

I wish you well as Celiac Disease is totally controlled with a gluten free diet. You child is young and would never know what gluten is as he grows up. Challenges will face him when they socialize. Hope this is helpful to you.

Best wishes for finding the source of his distress

[Guest nini]

positive dietary response is a sufficient answer for me. My daughter did not have the biopsy nor will I ever put her through eating gluten again just to get a test done.

My advice would be to go with your instinct and cancel the EGD and keep him gluten free. You know your baby better than anyone, and you know that gluten is the source of his problems. Celiac is "technically" the blunting of the villi, but in small children he may not have sufficient damage for it to show up in that test. Especially if the Dr.s do not take enough samples. They MUST do a minimum of 6 to 8 samples, and the risk of the procedure (anesthesia alone) is too risky for my comfort level to put a child through that.

ALSO, the Celiac expert that spoke at our recent support group meeting said that within 6 months she sees that the biopsy as the gold standard will NO LONGER BE THE CASE. The blood tests are getting more sensitive, and if a patient positively responds to a gluten free diet she NEVER challenges them. NEVER makes them go back to eating gluten just to satisfy a diagnostic criteria.

MY PERSONAL OPINION is to cancel biopsy and go back to keeping him gluten free. Regardless of whether it is simply gluten intolerance (pre cursor to Celiac) or full blown Celiac, the treatment is the same. you can tell by the way he has responded to the diet that this is the answer.

TRUST YOURSELF. I do not regret not having a "definitive" dx for my daughter. She and I both know that she reacts very violently to gluten, so we will not ever put her back on it.

many experts are now coming out saying that the biopsy is NO LONGER THE GOLD STANDARD. It is outdated and based on an archaic interpretation of what is Celiac disease. Celiac is still so misunderstood and missed by many doctors that are ONLY looking for villi damage. Ask yourself, if there isn't any damage YET, would you want to keep him on gluten until there is sufficient damage to his villi? Or would you rather be proactive and take him off gluten before his system truly starts attacking itself?

[Rachel--24]

Hi,

If you are looking for something on paper to tell you to keep him off gluten go ahead with the biopsy but in my opinion its not necessary at this point. The biopsy may be negative but it wont change the fact that he needs to be gluten free. Unfortunately the biopsy will only be positive if he has enough damage to his villi. He could be very symptomatic but still not have severe damage. I'm someone who needed a positive test to tell me that I'm not imagining things but if your son is suffering on gluten I just want you to know the biopsy is a hit or miss so you may want to think about how much that piece of paper means to you. I would imagine regardless of the biopsy results you would keep him off gluten due to the positive response his body has already shown. Ultimately that is the most definative test of all. If you put him back on the gluten free idet and all symptoms are gone you have your answer....if there are still lingering symptoms you can pursue testing for other possibilities. The diet will not interfere with this. I'm not sure if you mentioned how long he was on the diet. Having been off gluten for a period of time can interfere with the accuracy of the biopsy.

[Guest mesasmom]

Thank you all for your help with this difficult decision. While I know that regardless of what the biopsy says my son will never get gluten from me again, and I don't feel I need to have anything on paper to tell me that, I do still feel a need to have the biopsy done. He was only off gluten for 2 weeks and the improvements in his health were amazing. For me, having 3 other children, I guess I want to see if it is something genetic that I should maybe be looking into for the others. I think having the biopsy will help me figure that out. Maybe, maybe not. I just keep telling myself it is ONLY two weeks out of the rest of his life. Although, his other health problems have come back so strong, so quick I am not sure I will be able to make it the whole two weeks. Anyway...thank you again.

Amanda

[Guest nini]

I know you have to do what you feel is right, but for me I could not bear to keep my child on gluten one more minute once I realized that it was the culprit for all of her health problems. I researched the biopsy and decided that there was just too much risk involved (any time you go under anesthesia there is a risk of death) for me to subject my child to that. I know that many people have had the biopsy just fine with no bad reactions, but that's just me. I also don't have other children, but if I did, I believe very strongly that I would have them all on a gluten free diet regardless of symptoms.

I was dx'ed with Celiac via very very high blood test results. My dr. and I decided that the biopsy was pointless in my case. He wanted me off gluten asap because if I had stayed on it very much longer it could have killed me. I know my daughter has a genetic predisposition to it because of my dx, I can see where if you don't have that proof on paper you might question it. But I really think you already have your answer with his positive dietary response. And there is no guarantee that the biopsy will be accurate. I have heard so many stories about biopsies in children (and even adults) being negative, they were told to continue eating gluten and several years later with even worse symptoms had another biopsy only to find complete villous atrophy.

Honestly. I understand why you want a definitive dx, but there is no guarantee that even if you keep him on gluten and do the biopsy that you will get the answer you want, and it's two more weeks of watching your child suffer.

Look into Enterolab if you want another option. Your entire family can be tested and you don't have to be eating gluten for the tests to be accurate.

I apologize up front, I am very opinionated about this issue. I have spoken with MANY experts in the field about the biopsy, and it is really such a limited outdated archaic diagnostic tool, It is on it's way out as the Gold Standard (as determined by the AMA), many of the experts are starting to already recognize positive dietary response as a valid diagnostic tool.

[Guest Robbin]

Hi I have never posted before, but as a mom I felt I had to put my two cents in (whatever it may be worth) I have a son who is now 20 who has had type 1 diabetes since age 9. He was almost exactly like your son at his age. Very sickly and suffered from many illnesses (ear infections, serious diarrhea bouts, vomiting, tonsils, etc. ) for almost every MONTH of his life till age 5. He then began to gain weight, although could not tolerate milk products. I thought he was ok although he had stomach aches off and on and bouts of diarrhea and terrible gas. He was also an outgoing, strong willed, argumentative and generally nutty kid, so the doctors never took me serious. I knew something was terribly wrong with him, but the teachers he had and the doctors I took him to (many) all blamed it on behavior. He then started losing weight and suffering so much fatigue, excessive urination, and lack of appetite that I DEMANDED a blood test. (Before - they only checked his urine). By this time his blood sugar was over 500 and he was admitted to the hospital and the nightmare began. I am convinced that my child has celiac disease and that it caused his diabetes. The research I have done on my own recently has convinced me of it. Much to my horror, my other son has been for the last year (he's 12), showing the exact same symptoms. I have fibromyalgia and chronic diarrhea which has been attributed to IBS, however, since reading everything I can get my hands and eyes on, I know we all three have it. I have been gluten-free for three weeks and the improvement in my health is amazing. The trouble is, my blood results are negative and my doctor thinks its something else. My children both think I am crazy, but I need to have this "officially" diagnosed for their sakes as well as mine. I guess what I am saying in a round-about way is, I know the heartbreak you are going through, but what awaits him down the road could be worse as far as skepticism, serious autoimmune disease like diabetes, and major balking at the change in diet as an older child. Also, you need to think of things in his future--will the school need official Dr. orders for diet restrictions, or conversely, do you want an "official" medical record because of future insurance, career choices, etc in his future? In my opinion, the "official" diagnoses unfortunately, may be needed. Your other children and your husband or yourself could also be at risk. I am so sorry for the long post. Thank you all and God bless you all in this struggle.

[Guest nini]

in my daughter's case as far as school is concerned, I have a Dr. that is very supportive of the positive dietary response dx, and has signed the necessary paperwork that is needed for school. You do NOT need a Dr.s permission to go on this diet and many people are choosing to put their children on it without any official dx.

The only limitations I see is the other way around, IF you have a positive Dx on your permanent record, you can be DENIED health insurance coverage. Not lying, it happened to ME. I had to search high and low for an Ins. co. to cover me after my employer stopped carrying ins. benefits. I finally had to pay a much higher premium with a higher deductible and a waiver that they would NOT cover anything celiac related (which could be practically ANYTHING)...

[floridanative]

I am not even a mother at all but I have to second what nini said. I was almost asymptomatic and I knew it would be almost impossible for me to stick to the gluten-free diet without a firm dx so I had the biopsy. Also, I wanted to have proof so maybe eventually my family members would get tested. Now that the dx is in my files, I have to worry if it will in fact cause me problems in the future regarding insurance. There is no other industry for which I feel absolute disgust for the way they treat thier consumers. 'Please give us your money as long as there's nothing wrong with you that is'.

[skurtz]

Robbin I have to agree with you, its very hard to see your child suffer but without a diagnosis on paper you will have a hard time with school, camp anything your child is involved in . Also if is positive the rest of immediate family should be tested. Also your sisters & brothers should be aware especially because its genetic. It save grief for everyone around.

[chrissy]

amanda, i thought i'd tell you about my 3 kids with celiac---just so you can see how different every case can be. i have 14 year old twins and a 10 yr old with celiac. one twin had a negative biopsy, but they weren't looking for celiac. she was nauseated for 3 months with periodic diarrhea, a blood test was positive. the other twin was the first tested because of rashes that looked like DH. her blood test was positive, her biopsy showed NO damage, but it did show raised lymphocytes---but only in one spot. the 10 year old tested positive on the blood test (higher than the one that was nauseated all the time) the doc did not even do a biopsy on her. i guess having 3 children with the same blood test results made it a no-brainer. i have one other child that tested IgA negative, so we will be doing the celiagene and celiaplus tests through prometheus labs. my other children that have been tested were negative. i can understand you wanting a real diagnosis----one day he is going to be a teenager and say "mom, why do i have to eat like this?" he may not be celiac, but he definitely seems to have a real problem with gluten. good luck in your decision!

christine

[Cape]

Amanda,

I am one of those folks who will probably never get diagnosed with Celiac Disease at this point. I, by chance, stumbled upon gluten being a big problem for me. I had adominal pain, bloating, and unlosable weight gain for three years which my gynocologist had checked out thoroughly a couple of times. (I am almost 43 now.) I also had worsening shoulder and other joint pain. I thought sugar might be a problem for me, so I told my gyno that I was going to lessen my intake. She suggested that I do the same with white flour. I did and felt a tiny better. My family and I went on a trip and took some Omega 3 whole wheat bread and when I finished it, I was eating very little gluten. I was amazed at how much better I felt. My shoulder pain was gone and my tummy was not so grumpy. (I had heard about Celiac Disease on an NPR talk show, but never saw my symptoms linked with celiac disease.) Upon our return home I googled gluten intolerance and had found that I had the less typical symptoms, but I felt like I probably did have celiac disease.

I asked my GP to do a blood test which came back negative. (I had been off gluten for two weeks when I had had the test.) I felt so much better after I stopped all gluten that I could not imagine going back on it. (I had inadvertantly gotten barley gluten in some rice milk and got flu symptoms, fever, stomach ache/nauseous. I got a mouth full of canker sores and I got three big whelts on my face which took forever to go away.) I wanted to know if I indeed had celiac disease though so I got my doctor to refer me to a GI doctor so I could have a biopsy. I asked the GI doc if I should go back on gluten before the test. I was three months without gluten at that point. She said that I didn't need to, that she would be able to detect any damage even after being gluten-free for three months. Well, the biopsy was negative too, but I was not convinced that I didn't have Celiac Disease.

My dear friend who is a dietician mentioned all this to her husband who is the vice chair of pathology at the same university hospital as the GI. He convinced me to see another doctor in the same practice. I did, told him my story and he said that if I felt as bad as I said I did while eating gluten, he didn't see the benefit of my starting to eat gluten again for six months to have another biopsy which might just come back negative again. He said that he would do a blood test to see if I have the genetic markers for Celiac Disease.

I got the test results back last week. He said that I have one genetic marker (can't remember the exact name), but all Celiacs have it, but so does one third of the population and not all of them are Celiacs. His theory is that I might have Celiac Disease, but stopped eating gluten before there was much damage. He agreede that I should remain gluten free. He thinks that my kids should be tested and my brother and his kids as well.

My story is more complicated though. I felt so much better being gluten free, my abdominal pain is gone, but my joint pain has returned. I figured out that foods in the Night Shade family (tomatoes, potatoes, eggplant, peppers) are causing a lot of the pain as are a few others. I am avoiding those and am doing much better. Actually, if I was only gluten intolerant, I'd be grateful, but I have lost 25 pounds, have lost the "brain fuzz" (I had trouble "finding" the words that I wanted to use in my stories) and am writing again. I am generally happy most of time again.

I suppose, Amanda, I could have just mentioned that there is the option of the genetic test for your son and left my story out of it, but I suppose I just wanted to tell it. (Besides my 16 year old son as baby was a projectile vomiter and had loose stools most of the time and didn't sleep well. He seemed to out grow it, but I wonder, after reading your posting, whether he might just have gluten issues as well. He's 6'3" and an athlete, but I will not be fooled by less typical symptoms anymore.)

Thanks for sharing your story and asking your questions.

[Guest Robbin]

Hi again, Something I just wanted to add--before my son was diagnosed with diabetes, I (for once, no brain-fog) purchased one of those grow-up whole life insurance plans and it was one of the best things I could have done for the boys since now they will have a terrible time getting insurance and it carries cash value. So that was what I was trying to say that conversely, you want to try to get something like that before you get "official" dx on permanent records. Thank you all so much for the REAL LIFE-SAVING information I have gotten from this forum. God Bless.

[Guest mesasmom]

Again, I want to thank everyone for you advice and information. I am so torn as to what to do for my son. I keep going back and forth with the idea that he is young and it is ONLY 2 weeks. (He was only off gluten for a little over 2 weeks.) And the fact that regardless of the results, it is not going to change how I will treat my son. Regardless of whether it shows damage or not, I know I will not ever give my son gluten ever again. So....I just want to say thank and let everyone know that I am taking everything into consideration and appreciate all of your advice.

Thanks again,

Amanda

[Guest nini]

we know you will do what you feel is best for your son and your family, we just want you to have the benefit of all our collective experiences to back you up when you make your decisions. Good luck with whatever you end up deciding. We will be supportive of you regardless, and feel free to ask us any questions about adapting to the gluten-free diet with a small child.

[Cape]

Hi again, Something I just wanted to add--before my son was diagnosed with diabetes, I (for once, no brain-fog) purchased one of those grow-up whole life insurance plans and it was one of the best things I could have done for the boys since now they will have a terrible time getting insurance and it carries cash value. So that was what I was trying to say that conversely, you want to try to get something like that before you get "official" dx on permanent records. Thank you all so much for the REAL LIFE-SAVING information I have gotten from this forum. God Bless.

Robin, have you thought of having a blood test to see if you have the Celiac Disease gene markers?

I reread what you wrote farther up and I began reliving our life until my son until he hit puberty; ear infections, bad gas, and D. At age 12 he grew six inches and it seemed that all of his "issues" disappeared. My son is a big goof head as well and his friends call him "Housefly" because of his ADD tendencies. (He is fine in class situations and has no problem studying, but there is something about this "fly"-ness.)

My genetic test showing that I have one of the celiac disease genetic markers will make it easier for me to get my family members (son, daughter, brother, nieces and nephew) to agree to have the simple celiac disease blood test.

Good luck!

[Guest Robbin]

Robin, have you thought of having a blood test to see if you have the Celiac Disease gene markers?

I reread what you wrote farther up and I began reliving our life until my son until he hit puberty; ear infections, bad gas, and D. At age 12 he grew six inches and it seemed that all of his "issues" disappeared. My son is a big goof head as well and his friends call him "Housefly" because of his ADD tendencies. (He is fine in class situations and has no problem studying, but there is something about this "fly"-ness.)

My genetic test showing that I have one of the celiac disease genetic markers will make it easier for me to get my family members (son, daughter, brother, nieces and nephew) to agree to have the simple celiac disease blood test.

Good luck!

Cape-Thanks for the input-sounds like you have a "little one" ! like mine. He grew six inches one year from age 12 to 13. (School clothes x2 that year) I am going to go tomorrow to take the last "fishing expedition" test this dr. has me scheduled for--an upper GI--and then he's history. I am going to send for the enterolab kits. I know what going gluten-free has done for me. I had a weird private celebration today--first normal bm in about twenty years. Healthy people take things like that for granted. I tell my husband he should appreciate normal bathroom experiences!!(I am so weird sometimes.) Thanks again, R

[Cape]

Cape-Thanks for the input-sounds like you have a "little one" ! like mine. He grew six inches one year from age 12 to 13. (School clothes x2 that year) I am going to go tomorrow to take the last "fishing expedition" test this dr. has me scheduled for--an upper GI--and then he's history. I am going to send for the enterolab kits. I know what going gluten-free has done for me. I had a weird private celebration today--first normal bm in about twenty years. Healthy people take things like that for granted. I tell my husband he should appreciate normal bathroom experiences!!(I am so weird sometimes.) Thanks again, R

Congratulations, Robin. We folks with "different" GI issues appreciate small pleasures.

My "little one" is 6'3" and is muscular, but thin, especially now. He has been home with mono for the last two weeks and I've had some more time with him when he just listens. I explained to him that the next time he gets his blood test for to check on his mono, he'll get one to see if by any chance he has celiac disease. He was ok with it.

AND - if I had a dime for everytime I've been called "weird" by my family, friends and co-workers, I'd found a cure for celiac disease and had some pocket change left over.