My Daughters Gi Confused Me..please Help

[mrsdn5]

Hello I am new here and I have some questions. My 5 year old daughter 2 weeks ago had blood work done by her GI for celiac. I had thought she was lactose intolerant for about 1 year now but her symptoms recently had been getting worse. Abd pain distended abdomen, and leg cramps etc. Her blood work came back as they called it celiac transglutaminase antibody was 138. So she had an endoscopy yesterday and prior to the procedure I asked the doctor with a number that high is it likely she has celiacs. She told me that she also tested her for EMA and that was positive. So prior to procedure I was confident that was her diagnosis. After the scope the doctor came and spoke to us and said everything looked normal. There was 1 area that may have "looked bumpy". She said she took several biopsy's. She stated that when she looked close with the endoscope it appeared that all the villas were intact but we would have to wait for the biopsy. So I asked again with both blood levels positive what else could it be. She said that we might need to do stool studies and a colonoscopy. For what???? This is where I am confused. Why wont she just give her the diagnosis with the blood work even if the biopsy are negative. I asked her if I should start her on a gluten free diet or wait for biopsy. She said wait for biopsy. Well I didn't listen to that advice and started her on it yesterday. So I need some advice and insight as to what the GI is thinking she could have.

[tom]

My first thought is that the Dr is sticking to the increasingly antiquated idea of a "gold standard" for celiac dx - like only severe damage proves it.

Current research keeps showing that ppl should be & can be dx'd BEFORE the damage is highly visible & easily found. (Too many Drs don't even take enough biopsy samples) And that the blood test results you already have are sufficient.

Way to ask the good questions! Wish the Dr had an answer, but maybe this'll prompt her to read up on it? :hopefulface:

[pricklypear1971]

I believe the EMA is the most highly specific Celiac antibody test. Meaning, it is specifically looking for Celiac and not registering other diseases.

Someone else jump in here??

I do know that the doctor shouldn't judge the biopsy by the scope, unless damage is so severe as to see it. They are looking for microscopic damage during the biopsy analysis.

[mrsdn5]

I believe the EMA is the most highly specific Celiac antibody test. Meaning, it is specifically looking for Celiac and not registering other diseases.

Someone else jump in here??

I do know that the doctor shouldn't judge the biopsy by the scope, unless damage is so severe as to see it. They are looking for microscopic damage during the biopsy analysis.

This is what I was wondering I thought from what I have been reading is that the diagnosis of celiacs is true with even the blood work. I also spoke with a non pediatric GI and told him her number of 138 prior to me being aware of positive EMA and he felt she had celiacs. The part that I think is annoying me the most is that instead of saying everything looked good but we are waiting for the biopsy but start her on a gluten free diet now. She said not to start her on a gluten free diet until the biopsy comes back and if it is negative we may need to do a colonoscopy. Really put a 5 year old through that prep and procedure when the blood findings are conclusive of celiacs?

[pricklypear1971]

This is what I was wondering I thought from what I have been reading is that the diagnosis of celiacs is true with even the blood work. I also spoke with a non pediatric GI and told him her number of 138 prior to me being aware of positive EMA and he felt she had celiacs. The part that I think is annoying me the most is that instead of saying everything looked good but we are waiting for the biopsy but start her on a gluten free diet now. She said not to start her on a gluten free diet until the biopsy comes back and if it is negative we may need to do a colonoscopy. Really put a 5 year old through that prep and procedure when the blood findings are conclusive of celiacs?

Some doctors are just like that. And in truth, if she doesn't improve on a gluten-free diet (and anything f that may come up) you will likely be hearing about another scope.

[beachbirdie]

This is what I was wondering I thought from what I have been reading is that the diagnosis of celiacs is true with even the blood work. I also spoke with a non pediatric GI and told him her number of 138 prior to me being aware of positive EMA and he felt she had celiacs. The part that I think is annoying me the most is that instead of saying everything looked good but we are waiting for the biopsy but start her on a gluten free diet now. She said not to start her on a gluten free diet until the biopsy comes back and if it is negative we may need to do a colonoscopy. Really put a 5 year old through that prep and procedure when the blood findings are conclusive of celiacs?

A colonoscopy does not tell you anything about celiac disease. If the endoscopy has been completed, there is no need to delay a gluten free diet. If the doc is trying to comfort you somehow by telling you that there is no visible damage, that is not right. The only way to see damaged villi is at the microscopic level.

Can you post the exact names of the blood tests and also the reference ranges?

With two positive bloods, it is highly likely that she is celiac.

[mrsdn5]

A colonoscopy does not tell you anything about celiac disease. If the endoscopy has been completed, there is no need to delay a gluten free diet. If the doc is trying to comfort you somehow by telling you that there is no visible damage, that is not right. The only way to see damaged villi is at the microscopic level.

Can you post the exact names of the blood tests and also the reference ranges?

With two positive bloods, it is highly likely that she is celiac.

The celiac transglutaminase antibody the range <20 her number was 138. ( is that another name for ttg?) I dont have a number for EMA she just told me it was positive

[beachbirdie]

The celiac transglutaminase antibody the range <20 her number was 138. ( is that another name for ttg?) I dont have a number for EMA she just told me it was positive

I would only be guessing, but would guess that the transglutaminase is the TtG IgA. They almost never do the TtG IgG. Both the TtG IgA and the anti-EMA are pretty specific for celiac.

[ravenwoodglass]

A colonoscopy does not tell you anything about celiac disease. If the endoscopy has been completed, there is no need to delay a gluten free diet. If the doc is trying to comfort you somehow by telling you that there is no visible damage, that is not right. The only way to see damaged villi is at the microscopic level.

Can you post the exact names of the blood tests and also the reference ranges?

With two positive bloods, it is highly likely that she is celiac.

I agree completely. Go ahead and keep her strictly gluten free. She may have symptom relief before you even go back for the biopsy results. Being gluten free is not going to have any effect on testing for any issues other than celiac and with those two positive blood tests she does need the diet no matter what the biopsy results are. It would be a good idea to have everyone in the family screened for celiac with a panel even if they don't seem to have symptoms.

[Cara in Boston]

Yeah, what she said.

You don't look for celiac with a colonoscopy, so the doctor must be looking for something else - which means going gluten free is PERFECTLY FINE at this point. The blood tests were positive, your child should be gluten free ASAP. Even if the biopsy is negative, she has tested positive for celiac. There are lots of reasons it does not turn up in the biopsy. Human error, not enough samples taken or they simply missed the damage. Or, your child does not yet have damage. Why wait for damage? It is clear your daughter should be gluten free.

The fact that your doctor thinks he can "see" damage if it was there and that you were instructed to wait to start the diet leads me to believe he does not know much about Celiac Disease and you should be looking around for a replacement. Your child will need follow up care (re-testing to see if the diet is working) and possible consults with a nutritionist - you need a doctor who knows what he is doing and one you will be comfortable with for years to come.

The rest of the family should get the full panel of blood tests too - even if no one has symptoms.

I feel for you. Our first doctor told us my son did NOT have celiac because his IgA tests were negative (even though his IgG ones were all positive - at least the pediatrician knew enough to do all the tests) We found a specialist and sure enough, his biopsy was positive. Trust your instincts.

I had a positive blood test but my biopsy was negative. I was diagnosed (technically) with "gluten intolerance" even though I know I have celiac disease. All my symptoms (and I had lots, just didn't know anything about celiac disease until son tested positive) went away with the gluten free diet.

Cara

[1974girl]

oh my gosh! What is he thinking? She has celiac! My daughter has the positive blood work and positive (EMA). The doctor came out and said "I didn't see any physical signs of damage but that doesn't mean she is ok." They only take snippits of a few spots and your small intestines is LONG! My daughters came back "blunting" which is the beginning. So I went to a 2nd opinion just to make sure. She told me that she can't see damage unless the child has had symptoms for at least 2 years. She said most of her celiac patients have no visible damage while doing the EDG. My child has no symptoms. They just did a test because she has a thryoid disease that can go with it. So it is hard for me to justify this hard lifestyle with a perfectly healthy acting child. BUT...it can cause infertility and increase risk of other bad stuff so we are doing it. Not cheating at all! Have you called the University of Chicago's celiac hotline? They might be helpful to you.

[mrsdn5]

Thanks for the replies everyone still waiting for the biopsy results. The waiting part is killing me. Just from starting the gluten free diet a few days ago. I already notice small improvements from her. She hasnt woke up at night crying that her legs hurt and she has been eating all her food at preschool. She had been always coming home with more than 1/2 of her lunch still in her bag and she said she didnt eat it because she was full. Only little stomach aches but nothing like before. It used to be her saying "mommy I have to go to the bathroom by stomach hurts and running to the bathroom" and her sitting on the toilet close to tears. So I will not change what we are doing even if her biopsy comes back neg. I just want the confirmation that it is positive

[nora-n]

now here they have started to diagnose children without biopsy if they have had two very high blood tests for celiac.

The reason they often demand a positive biopsy, is that here in northern Europe the government health insurance pays more than 300 dollars a month if one is biopsy proven celiac, so the gastros in the whole world have to follow the same rules as here.

But now here the rules have changed!!

[mrsdn5]

I wanted to keep all you updated since you have been great reassurance to me. My daughters GI doctor called today and said that her biopsys came back positive. When I asked her did she know what Marsh level she was at she said at least a 3 because she had some areas that had total atrophy. She said that her's were mostly located in 1 part of the intestine so that is why when she looked with the endocope she thought she was still seeing villa. When everyone says go with your gut you were all soo right because I knew she was positive even if the biopsy came back otherwise, and I removed the gluten from her diet 1 week prior to what the doctor had said and she is now on the mend and not just starting to heal. Thanks again everyone. This is a great place to vent with people that understand.

[Skylark]

It's great that your doctor took enough biopsies to catch the celiac disease if it was confined to one area of her intestine!

I hope she feels better soon.

[Cara in Boston]

Great that she is on the road to good health. Don't forget to get the whole family tested - even if no one else has symptoms.

Cara