This Diagnosis Process Is Maddening!

[Mom-of-Two]

This entire process sucks. Really. I have posted before about having my 7 year old do the biopsy, etc- long story short, I have been gluten free 5 months after finding out I have celliac, had both our kids tested because of the genetics. My oldest came back with high ttg at 78.20 (normal <20) and the GI did not test her for EMA at that time. Sent her for endoscopy, which was totally normal, absolutely nothing abnormal at all.

He advised we leave her on normal diet and re-test in 6 months, suggesting "latent" celiac. I was not pleased with this advice or his general bedside manner, so we took ourselves to a second opinion at the Cleveland Clinic where I am seen, to another pediatric GI that specializes in celiac. He has us testing her EMA, checking her Vitamin D and iron levels, and also the gene test- which I called about and is covered by our insurance in this circumstance. He feels that all of these markers combined, even with normal biopsy, will give us more answers. He does not diagnose children with positive bloodwork and normal biopsies in the majority of cases he says, but because 1) I have celiac 2) her labs are abnormal and 3) she has unexplained joint pain, he feels what is the most likely is that her damage was not there YET, or was missed or patchy which we all know is common in children. The biopsy was on 6 samples- and the pathology dept is excellent, however he did have me sign a request and he is getting the slides to re-examine just to cover all bases and make sure his pathology dept doesn't see anything at all that could be suggestive.

We know we have a diagnosis either way, but know it's a long road and lifetime comittment, having a definitive answer would just be so amazing!!

[Mom2J112903]

When testing does not agree with clinical symptoms, in this case gluten-free = symptoms gone, why is formal testing needed IMHO.

[StephanieL]

When testing does not agree with clinical symptoms, in this case gluten-free = symptoms gone, why is formal testing needed IMHO.

Because if the child needs accommodations in school, a formal dx is needed. Also, many people need it to maintain gluten-free for LIFE.

OP, I am in the Cleveland area. Do you mind PMing me who your Dr is? We are in the midst of trying to find a new one. Thanks.

[Mom2J112903]

Because if the child needs accommodations in school, a formal dx is needed. Also, many people need it to maintain gluten-free for LIFE.

OP, I am in the Cleveland area. Do you mind PMing me who your Dr is? We are in the midst of trying to find a new one. Thanks.

My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?

[StephanieL]

My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?

You are kidding me, right? Why are you yelling at me about why some people feel the need to have a formal dx? What you do with your kid is your business, I was just answering your question as to why some people need/want a formal dx. Your comment doesn't even make sense, yes if you have Celiac why would you eat gluten but the OP said there isn't a formal dx so why would they NOT eat gluten again?

Also for accommodations in schools (re: a 504 plan which legally requires schools to do things for a child) a formal dx. is needed. You may not have needed such for your school but there are others who do and this is why it's needed.

Please, before yelling at others for being rude, maybe check your post before hitting reply!

[kareng]

My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?

I didnt find that comment rude at all. She was just answering a question of why someone might need a formal piece of paper.

[kareng]

This entire process sucks. Really. I have posted before about having my 7 year old do the biopsy, etc- long story short, I have been gluten free 5 months after finding out I have celliac, had both our kids tested because of the genetics. My oldest came back with high ttg at 78.20 (normal <20) and the GI did not test her for EMA at that time. Sent her for endoscopy, which was totally normal, absolutely nothing abnormal at all.

He advised we leave her on normal diet and re-test in 6 months, suggesting "latent" celiac. I was not pleased with this advice or his general bedside manner, so we took ourselves to a second opinion at the Cleveland Clinic where I am seen, to another pediatric GI that specializes in celiac. He has us testing her EMA, checking her Vitamin D and iron levels, and also the gene test- which I called about and is covered by our insurance in this circumstance. He feels that all of these markers combined, even with normal biopsy, will give us more answers. He does not diagnose children with positive bloodwork and normal biopsies in the majority of cases he says, but because 1) I have celiac 2) her labs are abnormal and 3) she has unexplained joint pain, he feels what is the most likely is that her damage was not there YET, or was missed or patchy which we all know is common in children. The biopsy was on 6 samples- and the pathology dept is excellent, however he did have me sign a request and he is getting the slides to re-examine just to cover all bases and make sure his pathology dept doesn't see anything at all that could be suggestive.

We know we have a diagnosis either way, but know it's a long road and lifetime comittment, having a definitive answer would just be so amazing!!

Now, back to the original poster....

It sounds like you have a diagnosis or are about to have one. From what you are saying, he is taking in to consideration many factors, not just one, to diagnose the child. If you see good progress with the diet, you will know for certain. Ask him to put the diagnosis in writing for you incase you need it for schools, college dorms, airplanes, camps, etc.

[MitziG]

I think this is a simple misunderstanding and a case of inferring tone to text, which is difficult to do correctly. Mom2J112903 read FOR LIFE as being kind of "snotty" even though it wasn't intended that way. You were emphasizing that if a person is going to undertake a lifelong diet they want to be sure that it is necessary.

Mom211j2903, maybe re-read the post a second time before posting. I am guilty of a few posts that were not accurate responses due to my mis-reading the OP's post as well. Let's try to remember this is a support group though, and always be respectful and polite. I have noticed a lot of sarcasm in a few other posts and it is likely to make the poster on the receiving end reluctant to post again.

[Mom-of-Two]

I did not find the comment rude- and I agree, I would prefer a formal diagnosis for school and other accomodations down the road. She attends a private school and we don't need anything official, we just coordinate with classrom teacher and send her safe lunches, parties are coordinated, etc. But I would just like to have a diagnosis with more than her one abnormal test, that's all. Because I am celiac myself, I know how hard it is and just want to be sure we have all our ducks in a row

We are lucky that she is willing to do the diet happily and enjoys much of the things we have introduced, and didn't mind giving the other stuff up. She is healthy now, which is our main concern, why allow her to be more damaged when we can fix it now by gluten free diet. The only reason I have been holding off removing it completely was in case this new GI wanted to do further testing, she will have the EMA and gene test done this week and in the mean time, will be moving toward total gluten free diet.

It is just irritating, you don't want doubt when it comes to your kids, you want a definitive answer, and because she does not have GI symptoms, it makes it harder to "try the gluten-free diet and have your answer". My own celiac dr feels the ttg is enough, and her joint pain is probably going to resolve gluten free (I hope!).

[kareng]

I did not find the comment rude- and I agree, I would prefer a formal diagnosis for school and other accomodations down the road. She attends a private school and we don't need anything official, we just coordinate with classrom teacher and send her safe lunches, parties are coordinated, etc. But I would just like to have a diagnosis with more than her one abnormal test, that's all. Because I am celiac myself, I know how hard it is and just want to be sure we have all our ducks in a row

We are lucky that she is willing to do the diet happily and enjoys much of the things we have introduced, and didn't mind giving the other stuff up. She is healthy now, which is our main concern, why allow her to be more damaged when we can fix it now by gluten free diet. The only reason I have been holding off removing it completely was in case this new GI wanted to do further testing, she will have the EMA and gene test done this week and in the mean time, will be moving toward total gluten free diet.

It is just irritating, you don't want doubt when it comes to your kids, you want a definitive answer, and because she does not have GI symptoms, it makes it harder to "try the gluten-free diet and have your answer". My own celiac dr feels the ttg is enough, and her joint pain is probably going to resolve gluten free (I hope!).

Actually, trying the gluten-free diet may give you an answer, combined with the other tests. If the joint pain goes away, if her tTG goes down in 6 months or a year, that would be one or 2 more things to give her an official diagnosis.

It is very easy for small intestine biopsies to miss the damage. I think that was one of the things the doctor told you. An adult has something like 16-20 feet of small intestine. If 25% were damaged, seems it would be easy to miss it with 6 tiny biopsies.

[StephanieL]

I know! My DS was completely asymptomatic. Biopsy was inconclusive. Only off blood work. After a few months of thinking about it DS went gluten-free. tTG's came down from 120 to 48 in 6 months. That was enough of this Dr's (he also had + genetics on both genes).

I still question his dx so I totally get what you are feeling. Why isn't it just a yes or no thing!

[Lfrost]

Let's try to remember this is a support group though, and always be respectful and polite. I have noticed a lot of sarcasm in a few other posts and it is likely to make the poster on the receiving end reluctant to post again.

It is just irritating, you don't want doubt when it comes to your kids, you want a definitive answer, and because she does not have GI symptoms, it makes it harder to "try the gluten-free diet and have your answer". My own celiac dr feels the ttg is enough, and her joint pain is probably going to resolve gluten free (I hope!).

I completely agree. We stopped testing after a negative blood test for celiac, but positive for allergies. I hate the doubt in the back of my mind that we should have done a biopsy or continued with possible Celiac. My son's reactions and symptoms make me question each day if there isn't something more to this than allergies. Even though the response would be the same (gluten free) I can't help but wonder. I also now look at my older children and wonder, could that be gluten related? But without a positive celiac diagnosis I wonder if I am being a hypochondriac.

My bloodwork was also negative, but I still smoke. The reason I smoke was because when I quit I got UNBEARABLE canker sores all over my mouth. At one time I could have over 30. One even ulcerated to the bone on my gums. My doctor and dentist were both baffled. The only thing that worked was to start smoking again. Could I have put Celiac/ NCGI into remission? I have read that smoking can put it off.....who knows.

Celiac is such a tricky, tricky thing! And I will always question at the back of my mind.

[Mom-of-Two]

Exactly. Well said, I will be the type of person with that nagging what if in the back of my mind---- making her gluten free is not a problem, and she is accepting of it at almost 8 years old, very willing and fine with the changes that are happening. Great attitude. The point is, I know how careful I need to be, eating out, cross contamination, etc so I just feel as though it's necessary to KNOW for absolute certain she has celiac disease. I have done TONS of research and feel that the ttg test is very accurate for a diagnosis, combined with her genetic history since I have it myself. However I doubt myself when I hear a GI dr tell me (an experienced one) that I should keep her on gluten and re-check her in 6 months because high ttg can mean other autoimmune diseases....we actually had her tested 18 months ago for juvenille arthritis because of her joint pain (negative). She is very healthy and has no signs of other illness, only goes to the pediatrician once a year for checkup! Like I said, he said he will check her EMA and the genetic testing, as well as vitamin deficiency just to give us more info to go on.

[psawyer]

Because if the child needs accommodations in school, a formal dx is needed.

My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?

Not rude at all, as I see it.

Perhaps Stephanie should have said, "a formal dx is often needed. There are plenty of stories here about people who did not have the official written document being refused accommodation by schools, universities, hospitals, care facilities, etc. She was not rude, she was addressing an issue that so many of us have witnessed. Your experience with your Catholic school system is the exception, not the norm.

If your son ever needs to justify his need under the ADA for reasonable accommodations, at any time during his life, your word won't be enough.

[Takala]

Lfrost,

Smoking tobacco does, for some, suppress celiac symptoms.

[Lfrost]

Lfrost,

Smoking tobacco does, for some, suppress celiac symptoms.

I am almost hoping that it is celiac related! I REALLY do want to quit, but when I did (5 years ago) I had not heard of Celiac, so didn't know about gluten free. The canker sores began 7 months after quitting and I suffered through them for about 8 months before starting smoking again!

My mother is in Canada right now and has been hunting down a home test kit, but hasn't found one yet. (she is skeptical, but willing to do the home test). She has Ulcerative Colitis, hypothyroidism, arthritis (hip replacement surgery this coming February), chronic canker sores, breaks bones easily (currently in a boot for a broken toe). Basically, if she tests positive I am going to quit and will retest for Celiac. We might also then pursue the testing with my son. Also my older children would then be tested.

So I guess it all rides on Mom's diagnosis! LOL. If she can't find a test kit while in Canada, I will just buy her one off the Internet!

[Darn210]

Just wanted to throw out that I am a parent that needed an official diagnosis to get an accommodation at school. I did not have to go through a 504 process . . . the school was perfectly willing to work with a note from my daughter's doctor.

[Lfrost]

I am a teacher at a school and while most teachers and school personnel will work with you and accommodate, A 504 is still as good idea. I would particularly add into the 504 that the people who work with your child are 'educated' about your child's needs. There are many people who have never even heard of celiac before.

[StephanieL]

Most schools would prefer you NOT have a 504 because it involves paperwork and added meetings. I as a parent would not NOT have on no matter how well the school was dealing with things. A 504 plan is a document that ensures my DS's allergies and Celiac are handled in a way that everyone knows about and we are all on the same page. It also give me legal recourse if they don't do what they have said they would to protect my DS.

An IHP does not do that so I would not have it any other way.

[Darn210]

I would not hesitate to go for a 504 if I felt the need for one . . . and will in the future if I ever do feel that need.

I believe that the need for a 504 is dependent on the age of the child and the circumstances. My daughter has always self-advocated for herself. I'm lucky in that she has never tried to cheat on this diet. She has ramifications and she wants to avoid them as much as I want her to avoid them. She also knows that she can play the "everyone else got" card and I will totally (over)compensate for whatever she's missed out on From the get-go, she has questioned/refused/requested labels on any food that anyone has tried to give her. I don't really consider this "normal" for a girl her age but she's great at this.

A contributing factor is the school nurse that we've had for my daughter's entire elementary career. She goes above and beyond.

If I had a child that didn't do those things or an even slightly uncooperative/difficult/non-celiac-aware environment, I most likely would go the 504 route to make sure my child was safe.

[Mom-of-Two]

Just wanted to post an update on us- I decided to take my celiac doc's advice, and keep the house gluten free to make it easier/safer for me. It was really not a huge transition, and once it was underway I decided I better do follow up tests on my daughter since her gluten would be limited to outside the house- the dr had ordered retest of the ttg, running endomysial, full CBC with iron, vitamin D.

The only blood test she had for celiac initially was ttg, three months prior, her level was 78.20 at that time, had a normal scope/biopsy with absolutely no damage found.

Her results of these labs:

tTG- 44 (<20 normal) this is down from 78.20 so I am assuming the 2-3 weeks off gluten at home only was enough to take that down?

Endomysial- positive. Her result wa 1:40 and range was <1:10 normal. I was confused by this test because my EMA test just said positive with no numbers or scale.

CBC- normal iron, high % of lymphoctes, maybe inflammation??

Vitamin D- low, level of 27 (30-80 reference range)

Insurance denied gene test but GI is still appealing, he thinks they will cover it although now I don't find it all that useful knowledge. In reality, I have celiac myself, so the genetics are there

He also had his own pathology re-read the biopsy from the other GI doc, I am supposed to speak with him today but I do not think there was anything out of the ordinary or he would have called me prior.

[Bubba's Mom]

I completely agree. We stopped testing after a negative blood test for celiac, but positive for allergies. I hate the doubt in the back of my mind that we should have done a biopsy or continued with possible Celiac. My son's reactions and symptoms make me question each day if there isn't something more to this than allergies. Even though the response would be the same (gluten free) I can't help but wonder. I also now look at my older children and wonder, could that be gluten related? But without a positive celiac diagnosis I wonder if I am being a hypochondriac.

My bloodwork was also negative, but I still smoke. The reason I smoke was because when I quit I got UNBEARABLE canker sores all over my mouth. At one time I could have over 30. One even ulcerated to the bone on my gums. My doctor and dentist were both baffled. The only thing that worked was to start smoking again. Could I have put Celiac/ NCGI into remission? I have read that smoking can put it off.....who knows.

Celiac is such a tricky, tricky thing! And I will always question at the back of my mind.

When talking to the Dr. at Mayo Clinic I said I felt better back when I smoked! I quit so I could be more healthy. My asthma got worse and my digestive issues got worse. He said that smoking suppresses Celiac symptoms.

Just wanted to confirm that issue.