Doctors Messed Up - Need Advice!

[celiackidmom]

Okay, so my 12-year-old son started not feeling well a couple months ago - he started sleeping all the time, ran fevers off and on, stomachaches, constipation, and lost a lot of weight so you can see all his bones. He caught a cold during this time, had bad allergies, etc. so we kept attributing his symptoms to this or that. Then he didn't get better so I took him to the doctor thinking he might have mono or something. The doctor thought right away that he had celiac but he also showed up positive for strep, even though he didn't have a sore throat. So, they put him on antibiotics for the strep and sent me to the lab for blood tests for the rest. After talking to several friends who have kids with celiac, I agreed that the doctor was probably right. In fact, when he was a baby, he seemed to have what they said was a "wheat intolerance" - he would get constipated, get rashes, seemed to throw up pretty easily and often, and would get irritable the more wheat he ate. I thought he outgrew it! Until now....

So, they call me this morning (over a week since he did the blood test) and said the lab messed up the celiac panel and now they need to have him go redo the blood test and to make sure that he's still eating wheat. Ummm... I took him off all gluten the day after I thought he might have it and he is feeling sooooo much better!! My little boy is coming back - he's happy, has an appetite, no more bad stomach pains, although they haven't gone away completely. He does have some nausea once in a while which is a side effect of the amoxicillin (which is gluten free). They want me to have him eat lots of gluten for the redo of the test. Are you kidding me??? He accidentally got a little gluten from a hot dog that wasn't gluten free and ran a fever that night and threw up the next day. Is this really necessary?? I don't want to poison him again because of their negligence! How important is it to have this test? Can't I just treat it as celiac and let him continue to recover???? Any advice would be very helpful. Thanks!

[Gemini]

Okay, so my 12-year-old son started not feeling well a couple months ago - he started sleeping all the time, ran fevers off and on, stomachaches, constipation, and lost a lot of weight so you can see all his bones. He caught a cold during this time, had bad allergies, etc. so we kept attributing his symptoms to this or that. Then he didn't get better so I took him to the doctor thinking he might have mono or something. The doctor thought right away that he had celiac but he also showed up positive for strep, even though he didn't have a sore throat. So, they put him on antibiotics for the strep and sent me to the lab for blood tests for the rest. After talking to several friends who have kids with celiac, I agreed that the doctor was probably right. In fact, when he was a baby, he seemed to have what they said was a "wheat intolerance" - he would get constipated, get rashes, seemed to throw up pretty easily and often, and would get irritable the more wheat he ate. I thought he outgrew it! Until now....

So, they call me this morning (over a week since he did the blood test) and said the lab messed up the celiac panel and now they need to have him go redo the blood test and to make sure that he's still eating wheat. Ummm... I took him off all gluten the day after I thought he might have it and he is feeling sooooo much better!! My little boy is coming back - he's happy, has an appetite, no more bad stomach pains, although they haven't gone away completely. He does have some nausea once in a while which is a side effect of the amoxicillin (which is gluten free). They want me to have him eat lots of gluten for the redo of the test. Are you kidding me??? He accidentally got a little gluten from a hot dog that wasn't gluten free and ran a fever that night and threw up the next day. Is this really necessary?? I don't want to poison him again because of their negligence! How important is it to have this test? Can't I just treat it as celiac and let him continue to recover???? Any advice would be very helpful. Thanks!

The one and only reason I see for doing a re-test would be to have concrete proof on paper that your son has Celiac so when he gets older, he will not doubt the diagnosis and start eating gluten again. However, even with his in-your-face symptoms, he may still test negative on the antibody test, even if he has Celiac, so you'll be back to were you are now. I would sit down and have a talk with him and explain the situation and then ask him point blank how he feels about a re-test and what would happen if it came back negative. How would he feel about that and would he continue to be good and never eat gluten again? If your son is committed to living gluten free on the results of the dietary trial, I would go ahead and say "No thanks" to the doc for a re-test. Either that, or have them pull blood immediately to see what the outcome will be. Some people don't automatically go negative on a test just because they have been eating gluten-free for a week or so. It's such a crap shoot with the blood work....you never know what will happen.

I wish you luck and am glad you have the common sense to see his problem for what it is!

[mommida]

Well I was told to put my daughter back on wheat for the blood test when she was about 16 months old. I didn't feel right about it argued with the doctor even. I did put her back on wheat to have her end up being hospitalized for dehydration from the "D" and vomitting.

You have a very hard decision to make. At least be warned that a gluten challenge is potentially dangerous. Know when to act and bring your child to the ER for dehydration. Kids get dehydrated so fast!

[Kay DH]

My doctors messed up my tests, so all were negative. The Celiac Panel was 2 months after going gluten-free. The GI only had me on the gluten challenge for 1 week before the endoscopy and only took one biopsy. So, I probably have celiac, but may never know because I am not going on the 3+ weeks on gluten needed for the tests to be redone. My genetic test was positive for HLA-DQ8, but the GI said that only gave me a 10% chance of having celiac. There may be insurance reasons to know, or not, whether your son has celiac. I have two close family members that have GI and immune system problems, but they will not be tested because in the U.S. that can result in being kicked out of insurance programs because of pre-existing or too-expensive conditions, and subsequent insurance coverage can be more expensive. If you are in England, then a diagnosis is good because you can get tax refunds for buying the medically-necessary gluten-free foods. Regardless of whether I have celiac, or have gluten intolerance without the GI damage, I am gluten-free for life. How likely is it that your son would be gluten-free, particularly with all the teenage social challenges, whether he knew he had celiac or not? You could also put off the tests for now, and see how things progress before deciding. If your son goes off the gluten-free wagon, then it may be a good idea to have the endoscopy at the same time. It is a tough decision for you, but life gets better after things settle down. I assume your son has been tested for the various food allergies, too.

[Cypressmyst]

I wouldn't do it. You have all the proof you need. Your boy will stay off gluten real quick if he ever decides to test it someday. I'm sure it won't be pretty.

These doctors are sadists if you ask me.

[Deb123]

I am so sorry to hear this story. I am a doctor who deals with Celiac patients. Our rule of thumb is the best way to determine if a person is intolerant to something is challenge them. Food challenge is 100% accurate, blood testing is only 30% accurate at best. Ask yourself this if you retested and the test was negative would you still follow a gluten-free diet for your son? If he feels better that is the answer. It can take up to 2 years for true Celiac patients to completely recover and that is if they do not have contaminants. YIKES! My daughter is a Celiac she is gluten-free but at 19 there always seems to be contaminants somewhere. She does the best she can to stay gluten-free.

The true dx of Celiac is done by intestinal bx which I doubt you would want to put your son through. The only reason a test is necessary is if you need to prove to someone else that your son has this disorder. I would not worry about the testing. If he feels better continue to feed a gluten-free diet.

Okay, so my 12-year-old son started not feeling well a couple months ago - he started sleeping all the time, ran fevers off and on, stomachaches, constipation, and lost a lot of weight so you can see all his bones. He caught a cold during this time, had bad allergies, etc. so we kept attributing his symptoms to this or that. Then he didn't get better so I took him to the doctor thinking he might have mono or something. The doctor thought right away that he had celiac but he also showed up positive for strep, even though he didn't have a sore throat. So, they put him on antibiotics for the strep and sent me to the lab for blood tests for the rest. After talking to several friends who have kids with Celiac, I agreed that the doctor was probably right. In fact, when he was a baby, he seemed to have what they said was a "wheat intolerance" - he would get constipated, get rashes, seemed to throw up pretty easily and often, and would get irritable the more wheat he ate. I thought he outgrew it! Until now....

So, they call me this morning (over a week since he did the blood test) and said the lab messed up the Celiac panel and now they need to have him go redo the blood test and to make sure that he's still eating wheat. Ummm... I took him off all gluten the day after I thought he might have it and he is feeling sooooo much better!! My little boy is coming back - he's happy, has an appetite, no more bad stomach pains, although they haven't gone away completely. He does have some nausea once in a while which is a side effect of the amoxicillin (which is gluten free). They want me to have him eat lots of gluten for the redo of the test. Are you kidding me??? He accidentally got a little gluten from a hot dog that wasn't gluten free and ran a fever that night and threw up the next day. Is this really necessary?? I don't want to poison him again because of their negligence! How important is it to have this test? Can't I just treat it as celiac and let him continue to recover???? Any advice would be very helpful. Thanks!

[sb2178]

You could also talk to the doc to see if you can get a diagnosis based on dietary response + genetics. Or, at least a medical note stating that he must eat a completely gluten-free diet for life. A diagnosis/note would probably be helpful when it comes to dealing with schools and colleges and such.

A biopsy or more blood tests are a hassle, but it does give you a baseline to look to is there are more problems in the recovery process. Knowing that his blood levels have dropped, or not dropped, could indicate sources of contamination. Ask him and see what he thinks.

[celiackidmom]

Thanks so much for all your posts!! I decided not to have him redo the blood work and have been keeping him gluten free. He is starting to play again, laugh and smile, and I am so glad! I would not have wanted to make him sick again just to get a positive test as he is responding to treatment. Thanks again and we will be on here often I'm sure as we learn more and more...

[ChristineSelhi]

Dear celiackidmom,

Congratulations on your decision! I have been struggling with my own diagnosis, and I think that the thing most of us with celiac disease and gluten intolerance need is validation. That your son has your for a mom telling him that he is not crazy and that this food hurts him is the best thing for him. If eating anything with gluten makes him feel bad, then it really doesn't matter if he has Celiac (as the only thing it means is that the celia in the small intestin are flattening--not to diminish that symptom! It can be devastating). I say be thankful that as a kid he manifests symptoms and can stay away from the food that causes those symptoms. I know some who have kids who have celiac disease, but don't exhibit any painful symptoms, so they don't take the diet seriously. In a way, his symptoms are a blessing, since childhood disease (like celiac and diabetes) can be so hard for the young ones to handle.

I wish that I had known so early, and I wish I had had a mom to support me through it the way you are supporting your son! (My mom is supportive, but I didn't find out until I was 27, and she wasn't there to make me food!)

Also, there are doctors who will give a diagnosis without blood tests. I am not 100% sure about DNA tests, though, as they don't completely understand which genes are always present in people with celiac. This was my problem, since I didn't get blood tests before I stopped eating gluten. I was never willing to do a gluten challenge--more like a month of hell and 6 more months of recovery.

Good luck and god speed, and thanks from one gluten-intolerant/celiac for taking care of another!

[eatmeat4good]

I am so sorry to hear this story. I am a doctor who deals with Celiac patients. Our rule of thumb is the best way to determine if a person is intolerant to something is challenge them. Food challenge is 100% accurate, blood testing is only 30% accurate at best. Ask yourself this if you retested and the test was negative would you still follow a gluten-free diet for your son? If he feels better that is the answer. It can take up to 2 years for true Celiac patients to completely recover and that is if they do not have contaminants. YIKES! My daughter is a Celiac she is gluten-free but at 19 there always seems to be contaminants somewhere. She does the best she can to stay gluten-free.

The true dx of Celiac is done by intestinal bx which I doubt you would want to put your son through. The only reason a test is necessary is if you need to prove to someone else that your son has this disorder. I would not worry about the testing. If he feels better continue to feed a gluten-free diet.

Dear Dr. Deb,

Thank you from the bottom of my heart for your post. Both my son and I have been very ill for several years. My diagnosis was fibromyalgia, migraine, depression, anxiety, and impetigo (but really it was Dermatitis Herpetiformis) My son has chronic asthma, colds, flu, muscle weakness and uncoordination. His Dr.s said I baby him and should send him to school even if he acts sick because he wants sympathy. That is so heartless and impossible for me to do.I knew it wasn't just asthma but no one would listen. He is now 16 and has lost his whole childhood to illness because I fed him pizza and macaroni and cheese. My Dr. gave me Dilaudid for migraine, xanax for anxiety, prednisone for autoimmune symptoms of unknown cause, and told me to take Immodium every day for diarrhea that had lasted 4 years. Sometimes I wonder why he didn't figure it out...but neither did 20 other Dr.s I went to.

When I found this site...I immediately went gluten free and so did my son. I asked the Dr. about testing for my son or a biopsy for my sores. He said "Why would I want you to pay thousands for tests that are just going to allow me to tell you to stay off of wheat/gluten." He said if all your symptoms are gone or going then that is your answer. It IS the answer. We have been one month gluten-free and very grateful not to be sick.

I would never ever go back on gluten even for a test. The pain was so severe it is not worth it. I am so glad you posted as a Dr. to give some validity to those of us who don't know what to do about testing or not testing.

For my son and myself...we are gluten free for life.

No Dr. ever took us seriously.

But now we have learned.

The only advice given by a Dr. that was useful to us is "Why make yourself sick for a test that will tell you to avoid gluten?"

So now we know to separate the wheat from the chaff and...go eat meat.

[T.H.]

I think I would decide the exact same thing. Frankly, doctors asking us to do something to our kids that we can tell is making them sick, just so they can test for the damage, feels like them wanting to cut the skin to make sure our kids our bleeding right.

The whole 'do no harm' theory seems to have been chucked out the window, these days.

One thing for the future? If you are in the USA, if you can, I'd take your son back after a while of being gluten free and show the symptoms that have disappeared, and get the genetic test, if your doctor is willing to give a diagnosis of celiac disease with that as evidence. Primarily because if a boy has celiac disease, he gets an automatic discharge from the military because supporting that diet is simply a pain in the butt.

If he doesn't have that, if there was anything that came up with the draft (unlikely, but just in case), he would have to go in, eat lots of gluten and get very ill, only to get diagnosed and get discharged anyway. So, just a small protection. Also, for college, while many colleges will accept the student's word that they have celiac, for dietary concerns in the dorms, some require a doctor's note. Just something to consider for later.

I imagine even if your doctor won't give the diagnosis of at least a wheat intolerance, I imagine SOME doctor would, if you can find the right one.

And if it helps? My daughter had celiac disease where she gets severe stomach pain even from minor CC from gluten. My father has the disease and almost no symptoms - he cheats on the diet all the time. My daughter doesn't. She is VERY vigilant about staying off gluten, because it hurts her so much. I imagine your son would be the same, with or without the diagnosis. Pain's very motivating, yeah?

Just as an aside - have you or your hubby been tested for this? If not, you might want to consider it. There's a very good chance that one of you has it, or will develop it in the future.