In Hindsight, Anyone Regret Skipping The Endoscopy?

[AGH2010]

Hi everyone,

I'm still struggling with whether to follow my gut and skip the endoscopy since my 2 year old daughter has tested positive on the EMA test. We're meeting with our original GI tomorrow (have been through 3 of them) and I know she'll push for the endoscopy. My husband and I want her to repeat the EMA just in case the first test was a false positive. But if it's positive again (or even if it's not), we're planning on going gluten-free anyway because she has so many of the other symptoms.

My only fear is that we will regret our decision not to do the endoscopy down the line to the extent no doctor will be diagnose her as celiac without the endoscopy. Has anyone face anything that's made not having an official diagnosis difficult?

(I know we can always do a gluten challenge but I don't like the idea of forcing damage on her at any point in her life).

Thanks!

[beachbirdie]

Hi everyone,

I'm still struggling with whether to follow my gut and skip the endoscopy since my 2 year old daughter has tested positive on the EMA test. We're meeting with our original GI tomorrow (have been through 3 of them) and I know she'll push for the endoscopy. My husband and I want her to repeat the EMA just in case the first test was a false positive. But if it's positive again (or even if it's not), we're planning on going gluten-free anyway because she has so many of the other symptoms.

My only fear is that we will regret our decision not to do the endoscopy down the line to the extent no doctor will be diagnose her as celiac without the endoscopy. Has anyone face anything that's made not having an official diagnosis difficult?

(I know we can always do a gluten challenge but I don't like the idea of forcing damage on her at any point in her life).

Thanks!

I do sort of regret not going through it. My doc discouraged it, knowing it is expensive and often not accurate if damage is patchy.

I didn't have enough of the "right" positive tests to give me absolute confidence in a celiac diagnosis; my only positive was TtG IgG.

I think if I also had the positive EMA, I would have been able to skip the endoscopy without regret...the anti-EMA antibodies are really specific for gut damage.

[Gemini]

Hi everyone,

I'm still struggling with whether to follow my gut and skip the endoscopy since my 2 year old daughter has tested positive on the EMA test. We're meeting with our original GI tomorrow (have been through 3 of them) and I know she'll push for the endoscopy. My husband and I want her to repeat the EMA just in case the first test was a false positive. But if it's positive again (or even if it's not), we're planning on going gluten-free anyway because she has so many of the other symptoms.

My only fear is that we will regret our decision not to do the endoscopy down the line to the extent no doctor will be diagnose her as celiac without the endoscopy. Has anyone face anything that's made not having an official diagnosis difficult?

(I know we can always do a gluten challenge but I don't like the idea of forcing damage on her at any point in her life).

Thanks!

I was diagnosed via blood work, after failing all of the tests by huge numbers. I was highly symptomatic for Celiac and weighed 97 pounds when diagnosed.

The EMA test is very specific for Celiac and no other disease will cause a positive. A false positive is highly unlikely. Mine was positive also.

I refused the endo because I was so sick at the time of diagnosis, the thought of putting a tube down my throat disgusted me. Plus, I was disgusted with the docs over their ignorance in obtaining a diagnosis for me, when I was highly symptomatic and skinny as all hell for over 25 years. They weren't getting my money or any more of me. I have never, ever regretted my decision. All of the doctors who saw me well after diagnosis never doubted I was a Celiac after seeing my test results and also because of my size. I am still very small, although I have gained 15 pounds since recovery.

I think you may want to repeat the test, a FULL Celiac panel, but I would still go gluten-free after the blood work. Your daughter is most very probably a Celiac if she has symptoms and a positive EMA....there should be no doubt. If her symptoms do not resolve on the gluten-free diet, THEN you may want to re-think your decision but it may turn out that the biopsy would be negative because she is so young, there may not be enough damage for the docs to find. That happens a lot. It is not always easy to diagnose Celiac, I know, but a positive EMA at the age of 2 screams of a gluten problem. Doctors make a lot of mistakes with very young children because of the way damage occurs.

Lets face it...they do endo's because they make a lot of money from them. If the biopsy were to be negative, they'll tell you your daughter is not a Celiac and then she'll end up like me....she'll get deathly ill at a later age because they missed it earlier. I really think with a positive test like the EMA, you can be comfortable calling her Celiac.

Best of luck to you!

[1974girl]

Let me tell you what I'd do. First let me tell you what I did. Mine had the pos TTg and EMA and I chose to scope her since she had no symptoms. I knew EMA was around 98% sure but as a mama I was holding on to that 2%. She was positive but they did find an esophagus problem and ulcers. So the scope did alert us to other things. However.... If I were you I would retest her and send to a different lab. If EMA is positive again, I'd go gluten-free and then retest in 6 months. Her antibodies should be gone proving she really did have it after all. I just got back our 6 month retest showing normal TTg (8) after being 164 just 6 months ago. I question no more. Good luck!!!!

[AGH2010]

Thank you so much for all your responses. I'm wondering now if we might find other problems like you did through the endoscopy... Agh, I'm driving myself crazy trying to decide. But I think we will most likely skip it. I just hope our GI is willing to continue to see us even if we skip it.

[bartfull]

I am one who wishes I could have gotten tested. My digestive reactions are mild compared to most. My most certain symptom is psoriasis. I have no idea if I am gluten intolerant or if I am doing damage when I get CC'd. If I knew for certain it would eliminate the worry, and even though the psoriasis is painful and the insomnia and brainfog are a pain in the neck, I would be more willing to take a chance at restaurants if I knew I wasn't damaging my gut. I could put up with a few sleepless nights and a week or two of foot and hand pain (that's where my psoriasis is) just for a chance at having dinner out with friends once in a while.

Another thing is, I had been taking a multi-vitamin that I stupidly didn't read the whole label. A nutritionally savy friend brought them to me. It turns out they have wheat grass and sprouted barley grass in them, and I never got a reaction! I don't know if maybe it is something ELSE I gave up when going gluten-free that has been causing my problems. Maybe I'm just salicylate sensitive. Odds are I DO have celiac because my Mom had it and going gluten-free "cured" the psoriasis, but I'll never know for sure without testing.

[Gemini]

Thank you so much for all your responses. I'm wondering now if we might find other problems like you did through the endoscopy... Agh, I'm driving myself crazy trying to decide. But I think we will most likely skip it. I just hope our GI is willing to continue to see us even if we skip it.

Regarding the "other" problems that might be found....many of them are the direct result of ingesting gluten, like inflammation or ulcers. These should resolve and heal once gluten free and from what I have heard from other people, are not treated separately. They are part and parcel of untreated Celiac.

If your daughter goes gluten free and her symptoms resolve and she feels good, there is no reason to suspect other problems. That was my plan....if I did not get 100% better on the gluten-free diet or developed other symptoms/problems, then I would have to undergo an endo. Kids heal fast also.....not like us older folk!

With all due respect, any doctor who would refuse to see a patient if they decline a test that may not be necessary, I would find another doctor, pronto!

They have no right to hold you hostage, they are supposed to be there to help. An endo is not necessary all the time for a diagnosis of Celiac. You already have that with her blood work.

[MitziG]

EMA doesn't give false positives. If you don't want the endo, find a doctor who will dx without it. Theyy are out there.

[Darn210]

Just letting you know what I have dealt with through our school system . . .

My daughter is formally diagnosed so she is eligible for a gluten free lunch through the school system. She had to have a doctor's note to be eligible.

She was having symptoms during her fourth grade year. They were allowing the kids to bring snacks (think goldfish and graham crackers) into the class room. The school nurse, who is well aware of my daughter's needs, asked me to bring a note from the doctor and she would have snacking removed . . . I did and the snacks were gone.

My daughter's GI would have made the diagnosis based on the blood test alone . . . along with a follow up test to show that the gluten antibody numbers went down. He did an endoscopy because he was looking for something else, which thankfully she did not have. Now, I do honestly believe that my daughter's pediatrician would have made the diagnosis based on the blood test alone or at least written the notes to deal with the school. It doesn't have to be a GI.

I've had no problems dealing with the school, and most of the items/events there we have just handled on the fly and didn't have go through any formalities . . . but they know I have a doctor standing behind me.

[Roda]

I do regret not having the biopsy on my now 7 year old. At the time(he was 5 almost 6) I had taken him to a different allergist for retesting and asked if they would do the celiac panel also again. All his skin allergy testing came back negative but he did show positive on the IgA tTG on his celiac panel. For some reason the labs around here will not do a EMA test saying it's the same thing as the tTG. I had convinced myself that the positive blood test was enough and I feared getting a false negative biopsy.

I put him gluten free for three months and after that time, we decided to do a gluten challenge with the goal to get a biopsy. It didn't go so well and the challenge only lasted three days. My son was so miserable, that my husband couldn't justify doing that to him for three whole months. So we don't have an "official" diagnosis yet but he is celiac none the less.

I haven't run into any problems at school and our allergist writes a note saying that he needs to be on a gluten free diet. I am seriously considering paying out of pocket for the gene test. I know it is not diagnostic in and of itself, but it could add to the picture. If he were to have a celiac associated gene, his symptoms before gluten free, positive IgA tTG, mom firmly diagnosed celiac(blood/biopsy), resolution of symptoms on gluten free diet and recurrence of symptoms upon gluten challenge, I would think that would qualify for an "official" diagnosis without putting him through the barbaric gluten challenge.

I wish I had done it from the start. The end result would have been the same but at least I wouldn't have the regret. At least I have something on paper, his positive blood test. (He is negative now gluten free)

My oldest boy has had repeted negative blood work. When he quit growing and started having some new symptoms I decided to consult a GI. She agreed to scope him and it came back negative also. I put him gluten free anyway and noticed BIG changes in him. He decided to stick with it even though he does not have a diagnosis. He has been gluten free now for 11 months. I never had any problem with the last school year with him and I didn't have any note from the doctor. He is going into middle school this year so that probably will change. He has a follow up with his GI soon so will get something in writing then I hope. Otherwise I'll pack his lunch and hope he makes smart choices when he is in situations at school.

[Mom-of-Two]

My own personal advice, have her scoped. However, know that she is very young and may not show any damage, also it is very patchy in children- so, it is difficult to really know what is actually there that was missed! It is absolutely frustrating, the process of diagnosing celiac disease! I had my children tested after learning I myself have celiac, not expecting anything abnormal, since they don't have any "symptoms". My oldest does have joint pain occasionally, but nothing that would have sent us seeking a diagnosis, she did have a rheumatoid panel just in case, as requested by our pediatrician some time ago. Very healthy, never sick, no GI issues EVER, not as a baby or toddler, or young child. Her ttg came back elevated at 78.20 (<20 normal) and that was the only test they used for screening in children- he said it is the most effective test. He did NOT test EMA- suggested the endoscopy, which I thought about for several days, I was very hesitant but we asked her how she felt, and she was ok with it, really had no fears or concerns. It was at Children's hospital, they were AMAZING, and a great experience. I don't regret it at all, because I was confident in the care she got, and felt the benefits of having it done outweighed the risks.

When the results came back, the GI told us she does NOT have celaic- that her villi were "beautiful", long and delicate, she did not even have an increase in the number of white cells which is often the first sign of damage. So, no damage intestinally. This is great, however, it has led us down this road of uncertainty, and now TWO pediatric GI drs telling us to leave her diet as is, and re-test her ttg in 6 months time. I have struggled greatly with this.

So just be prepared, because biopsy is really difficult in children. And it might not give you a diagnosis!

[L's Mom]

I would also suggest have the scope. We did it with my 16mo. who was also very sick at the time and had already had to endure an upper GI series just days before. All of her tests were positive for Celiac but the doctor's reasoning was that if I was going to take an entire category of food off my daughter's table FOREVER, we should be 100%. I agree. They were also able to see the extent of damage while in there and that was helpful to know. And though it was traumatic, the trauma was mine and not hers. The doctors were wonderful, sang to her while they gave her the nitrogen, and I held her. She was groggy after but that was the worst of it. And then we knew.

[AGH2010]

Update: we went to see the original dr today. She's going to do another celiac panel and check her blood for anemia and inflammation to see if they've improved. She repeated that she'd vote for an endoscopy to confirm so we wouldn't have any doubts in the future.

We're going to wait and see what her results are but as of now I'm strongly leaning towards skipping the scope. I just hope to find a GI who will diagnose her on bloodwork alone if I need an official dx because our current one said she wouldn't do it. I'm jealous of those of you who have drs willing to do it!

My main hope is that going gluten-free will relieve her symptoms and reduce her inflammation.

Thanks again everyone for weighing in. Much appreciated!

[Darn210]

I just hope to find a GI who will diagnose her on bloodwork alone if I need an official dx because our current one said she wouldn't do it.

That's a shame. If you have problems with the GI, give your pediatrician/family doctor a chance. Offer "before gluten free" and "after (6 months) gluten free" blood test results and any resolution in symptoms and improve growth as your evidence. You may not get a "Celiac" diagnosis, but you may be able to get "Gluten Intolerant - This child needs to be gluten free" kind of support if you need it in a few years when you get to school.

[Darn210]

Also, keep ALL your blood test results. You may not get a diagnosis today, but a future doc a couple of years from now may be willing to do it based on the old blood tests.

My daughter's GI thinks that it will be a matter of time before the endoscopy part is eliminated. Five years ago, when my daughter was diagnosed, he thought it would be in 10 or so years. The reasoning being that the blood test/endoscopy combo has always been the standard protocol based on blood tests that were far less accurate than what is used now. And that in general, the medical field would need to see it proved out over time that it wasn't needed.

It's been five years since he said that . . . I'm not convinced that in five years they will let the endoscopy out of the equation, but I do see more and more people that are diagnosed on blood work and results so I do think it's coming . . . maybe in 10 years, eh?

[AGH2010]

Also, keep ALL your blood test results. You may not get a diagnosis today, but a future doc a couple of years from now may be willing to do it based on the old blood tests.

My daughter's GI thinks that it will be a matter of time before the endoscopy part is eliminated. Five years ago, when my daughter was diagnosed, he thought it would be in 10 or so years. The reasoning being that the blood test/endoscopy combo has always been the standard protocol based on blood tests that were far less accurate than what is used now. And that in general, the medical field would need to see it proved out over time that it wasn't needed.

It's been five years since he said that . . . I'm not convinced that in five years they will let the endoscopy out of the equation, but I do see more and more people that are diagnosed on blood work and results so I do think it's coming . . . maybe in 10 years, eh?

Interesting. Seems logical to me! Yes, will definitely keep her results. I have them scanned already so that I have an electronic copy in case I lose the paper ones.

Just praying that her #s go down once she's been gluten-free for awhile.

[mommida]

My daughter was too ill for the endoscopy. Her Celiac blood panel was postitive. Hospitalized for dehydration and no scope was done. Positive for 2 Celiac genes. Started a gluten free diet at 17 months old.

She was doing great on a gluten free diet until she was 6 years old. She started having symptoms as if she was glutened. She began to vomit up to 5 times aday. She was scoped and diagnosed with Eosinophilic Esophagitus.

Since she has been scoped a few times to keep tabs on the EoE, there has been no Celiac damage present. (Duh she hasn't had gluten since she was 17 months old.) The pediatric gastro. has UNDIAGNOSED her Celiac. (we are currently finding other specialty doctors for her)

There are other disorders that are known connections to Celiac that an endoscopy can rule out at the same time as diagnoses for Celiac. You can get an idea of how much damage needs to heal from Celiac at the time of scoping.

Seriously, I would start the gluten free diet as soon as testing has been completed. I do think there is enough testing to prove Celiac right now.

Just my 2 cents from experience.

[Gemini]

My own personal advice, have her scoped. However, know that she is very young and may not show any damage, also it is very patchy in children- so, it is difficult to really know what is actually there that was missed! It is absolutely frustrating, the process of diagnosing celiac disease! I had my children tested after learning I myself have celiac, not expecting anything abnormal, since they don't have any "symptoms". My oldest does have joint pain occasionally, but nothing that would have sent us seeking a diagnosis, she did have a rheumatoid panel just in case, as requested by our pediatrician some time ago. Very healthy, never sick, no GI issues EVER, not as a baby or toddler, or young child. Her ttg came back elevated at 78.20 (<20 normal) and that was the only test they used for screening in children- he said it is the most effective test. He did NOT test EMA- suggested the endoscopy, which I thought about for several days, I was very hesitant but we asked her how she felt, and she was ok with it, really had no fears or concerns. It was at Children's hospital, they were AMAZING, and a great experience. I don't regret it at all, because I was confident in the care she got, and felt the benefits of having it done outweighed the risks.

When the results came back, the GI told us she does NOT have celaic- that her villi were "beautiful", long and delicate, she did not even have an increase in the number of white cells which is often the first sign of damage. So, no damage intestinally. This is great, however, it has led us down this road of uncertainty, and now TWO pediatric GI drs telling us to leave her diet as is, and re-test her ttg in 6 months time. I have struggled greatly with this.

So just be prepared, because biopsy is really difficult in children. And it might not give you a diagnosis!

Ttg can be elevated from other autoimmune diseases and that is why you never try to diagnose Celiac from a Ttg test alone. It is NOT the most effective test because it can indicate other problems besides Celiac.

So...what have they done about her elevated Ttg...there is a reason it's elevated.

[Roda]

Ttg can be elevated from other autoimmune diseases and that is why you never try to diagnose Celiac from a Ttg test alone. It is NOT the most effective test because it can indicate other problems besides Celiac.

So...what have they done about her elevated Ttg...there is a reason it's elevated.

I agree with this.

In our case the tTG was the only thing elevated also. My youngest son did not have any other autoimmune diseases, and with his symptoms he was having at the time and his issues as a baby, in hindsite, I had no doubt in my mind that celiac was the issue. I even believe he was celiac as a baby now. I even attribute him as helping me find out I had celiac. My diet changes while breastfeeding him(no dairy, oats, rice or tree nuts and I ate lots of fresh meats, fruits and veggies and was unknowingly gluten lite)to help with his unrelenting reflux, eventually lead me to my diagnosis when he was almost 4. He was tested then and his blood work was negative so we thought he was fine. Then about 1.5 years later he started complaing of symptoms of reflux, belly aches, behavior changes/temper tantrums, borderline obcessive behavior and fat in his stool. I still regret not getting the scope/biopsy before he went gluten free, but a negative scope wouldn't have kept me from putting him gluten free. Heck I put my oldest son gluten free with no positive bloodwork and a negative biopsy. My only regret with him is that I didn't try it sooner. He feels so much better and we have seen many improvements that on his own decision he decided to stay on it. I toyed with it for two years prior too, because I didn't want to impsose it on him without just cause.

So if you rule out other autoimmune diseases, then I would at least trial her gluten free for a good three months. You'll probably get the answers you need from the elimination. We sure did.

[Darn210]

Heck I put my oldest son gluten free with no positive bloodwork and a negative biopsy. My only regret with him is that I didn't try it sooner. He feels so much better and we have seen many improvements that on his own decision he decided to stay on it. I toyed with it for two years prior too, because I didn't want to impsose it on him without just cause.

Don't second guess yourself . . . he may not have been mature enough two years ago to keep himself on it even if he knew he felt better. It's hard enough for kids that have all the positive testing. The fact that he's committed to it without that is saying a lot.

[cyberprof]

AGH2010 - what others here may be overlooking is that as a child, your daughter faces a different battle than adults do. Some schools are very picky and do require a doctor's note to do things like put the child at an "allergy-free" table in the cafeteria, provide "safe" food on an overnight outing (very common in 5th and 6th grade) and even some colleges require it.

Second thing to think about is how awful gluten challenges are for most people on this site.

Third, if you're going to shop around or skip it, be sure not to go gluten-free until after you shop around because some docs WILL diagnose based on response to diet plus bloods plus perhaps gene testing results.

Finally, children as they mature can change and become very defiant. If you can't tell your kid that you and docs are 100000% certain that they have celiac, will they cheat (more than) if they are diagnosed? As a parent of college-aged kids, I can tell you that kids development is not always rational. My son went gluten-free at age 15 and without any arm-twisting by me because he wanted to grow (see my signature below) and go into puberty - very strong motivators for any young man. But kids who are gluten-free and don't get symptoms (which happens often to teenagers) may not be compliant.

My suggestion: Ask your current doc if she will diagnose your daughter as "gluten-intolerant" based on blood tests and response. Some schools may take that note, not really caring that it doesn't say "celiac" (or knowing the difference between gluten-intolerant and celiac).

There are some docs that diagnose on symptom resolution, blood tests, etc. You may want to post your location on the "Doctor" forum of this board and ask for names.

In case the above wasn't clear, I do vote for the scope in your case.

[Mom-of-Two]

I asked BOTH pediatric GI's about the possibility of her having another autoimmune disease, since all we have to go on right now is elevated ttg- I had the retest today so maybe it will show EMA, maybe a different ttg level than 3 months ago as a reference point. She was tested for juvenille arthritis 18 months ago, SED rate for inflammation, etc because of unexplained joint pain (very infrequent) and that panel was normal, she has never been tested for diabetes or thyroid however. I will certainly look into that if this celiac testing doesn't get us anyplace.

Neither GI thought it was any of those things, based on her healthy history and overall wellness, however as we know some children don't present with symptoms to many things!

I figure the odds of it being another autoimmune disease, and NOT celiac, with me having it, are pretty slim---- BUT, again, I don't feel it's right to say she has celiac disease when all we have is ONE elevated ttg test- that is hasty to me, given the fact she is not symptomatic and very healthy- aka not an urgent need to go gluten free. I hope we get more answers for this blood test today. I know she was lighter on gluten, but we have come far making the house gluten free, and I didn't really feel I could adequately gluten her up on a day to day basis- like I said, she has been consuming a decent amount, and it has only been 2 weeks of eating it lighter. Hopefully I get accurate results with some sort of resolution although I have this gut feeling I am not going to! It is difficult to have your child go through the endoscopy process and several blood draws, and not be any closer to something. But, thankful they didn't see anything else wrong.

[Roda]

Don't second guess yourself . . . he may not have been mature enough two years ago to keep himself on it even if he knew he felt better. It's hard enough for kids that have all the positive testing. The fact that he's committed to it without that is saying a lot.

When this child decides to do something he is committed and doesn't care what others think. I think the biggest motivation for him is that he has noticed weight gain, has grown 3" over the past year and does not have daily stomach aches anymore. I do worry though that when he gets older he will test the waters. If he does then it's his choice and will have to deal with the reprocussions. He's been really talking about the military lately. His interest has peaked because his oldest cousin recently graduated from basic training in the Marines and is currently doing other training. He keeps saying that since he isn't diagnosed he could still go. As of right now he can't since he was diagnosed with asthma when he was 6. He wants to do another methacholine challenge to see if he can get that diagnosis off his medical chart. I'll probably wait until he is around 15 to do it again. He is not on any meds for it. I keep telling him that there are still plenty of options for him even if he can't enlist.

[AGH2010]

Wanted to give everyone an update. We decided to go ahead with the endoscopy and it couldn't have gone better!!!! I'm so relieved we did it. Our GI is very caring and as the mother of a toddler herself, she made the whole separation as easy as possible. My daughter is very attached to us but she was willing to let the doctor carry her to the procedure room. All she remembers is the doctor asking her to blow a balloon.

It's only been a few hours and she's back to her old self. Hope I'm not jinxing anything!

Now we have to wait and see what the biopsies tell us. Regardless we are going gluten-free as of today because her antibodies were high so I don't need damage to prove to me that she has celiac.

[beachbirdie]

Wanted to give everyone an update. We decided to go ahead with the endoscopy and it couldn't have gone better!!!! I'm so relieved we did it. Our GI is very caring and as the mother of a toddler herself, she made the whole separation as easy as possible. My daughter is very attached to us but she was willing to let the doctor carry her to the procedure room. All she remembers is the doctor asking her to blow a balloon.

It's only been a few hours and she's back to her old self. Hope I'm not jinxing anything!

Now we have to wait and see what the biopsies tell us. Regardless we are going gluten-free as of today because her antibodies were high so I don't need damage to prove to me that she has celiac.

Thanks for posting! I am so glad everything went well and that your daughter was not too stressed by the whole thing! How nice to have a doc who understands toddlerhood!