Confused After Endoscopy!?

[Mom-of-Two]

Decided to start a separate topic, my 7 year old had her endoscopy yesterday and did just great. He did not see aything that stuck out at him, but took several biopsies, including from stomach and esophogus which I had no idea he was doing- what does that have to do with celiac, I understand the intestines to be the affected area. At any rate, no redness or inflammation. We await the results, which are supposed to be Tuesday.

Background- I have celiac (4 months gluten-free now) and wanted to test my kids knowing there is a genetic factor. No GI symptoms in them, but a few vague things in my 7 year old like skin irritations and joint pain. Her celiac blood panel came back elevated--- her tTG was 78.20 I believe- normal <20 I believe they said. I was under the assumption that based on that, she has celiac disease, with or without a positive biopsy, just based on the knoweldge that I have it, and her blood results are elevated. HOWEVER, this GI dr told us after her scope yesterday that IF her biopsy is negative, she had a false positive blood result. I am baffled. I know some drs still believe the biopsy to be gold standard (he is one of them) HOWEVER his advice really confused us, and now I feel clueless about what is happening.

My full blood panel was elevated and numbers super high, the only test he did on them was the tTG and total IgA serum I believe- he said that is the specific test he uses in children with great accuracy. He is a well known pediatric GI, and we do like him overall but now I am totally confused. Walking around thinking she has celiac too, and ready to make this switch for her- ????

If her biopsy is negative, what do I do? I thought the point of the blood test is that if you produce antibodies to gluten, you have celiac disease. How can she have that elevated number if she is NOT reacting to gluten? While I would never want to have my kids have celiac disease, I am quite worried about her joint pain in particular (her pediatrician has tested her for JRA, etc about a year ago) so if her biopsy did come back positive, I think I would have some relief honestly that there was a reason for some of her issues.

My 4 year old just got all normal results back- so we will have him tested regularly.

[pricklypear1971]

Did you show the new pediatric guidelines to the doctor and discuss them?

If so, and the biopsy is negative, put her on the diet and keep a diary. Talk to the doctor about what happpens. Ask for a dx based on results of the gluten-free trial (assuming there's a good result).

You should also ask for screening for other ai diseases if the TTG doesn't fall - have they screened her for Hashis? You mentioned a dx for Ped RA? The TTG can be elevated from other ai diseases, but I believe it's unusual for it to be THAT elevated simply from another ai disease.

If you think gluten-free is helping after the trial, and you don't agree with the doxtor's dx, I'd find a more progressive doctor who is willing to work with you.

As you already know, get copies of all tests.

[Mom-of-Two]

My pediatrician suspected autoimmune because myself and hubby both have an autoimmune disorder- she was screened for JRA last year with normal results, had all normal CBC, counts and various labs that my pediatrician ran. She went on the premise that if the joint pain was random, likely activity related, but I was ok with that since it wasn't yet persistent- NOW it is, and with my own celiac diagnosis, I thought maybe that was the piece of the puzzle!

She has never been tested for anything thyroid related, only the JRA. She is very healthy, always has been, no real symptoms other than the joint pain which does not keep her from activity, but persists mostly at night, knees primarily and she is always cracking and twisting her wrists and ankles, which I have asked her not to do, but my hubby does the same thing and says it's uncomfortable and instict to crack them to try and fix the discomfort.

I am jumping the gun because her biopsy won't be back till Tuesday so no reason I guess to be worried till then, I just felt so confused as he told me that she could have high tTG level, negative biopsy, and his conclusion is no celiac disease when I have it myself, just didn't make sense to me---- feels wrong to feed her gluten when her body appears to be reacting to it, just because her biopsy might be negative.

[mamaupupup]

Hi there,

Our local pediatric GI believes elevated TTG is enough for a Celiac diagnosis. It's certainly enough for a Mom to decide to go gluten-free for her kids What it may not be enough for is to get a 504 plan/ADA help in dealing with schools.

If you look up TTG and the accuracy/specificity it is an excellent test.

We have twins with Celiac. One had excruciating muscle/joint pain on gluten. Since we've been off gluten, pain has decreased from 3+ times a week to 2-3 times a month.

IMHO I believe that little bodies who are otherwise healthy and young can still have a healthy gut and have elevated blood levels. I don't believe the biopsies for the littles is that helpful...I think one day we'll find out more that littles regenerate and heal their guts very quickly...

You may also want to look up "latent Celiac Disease" -- if I'm remembering correctly (note I have the flu at the moment so my brain is not functioning optimally!) -- latent celiac disease is when bloodwork is elevated but there has not yet been damage done to the gut.

[beachbirdie]

My pediatrician suspected autoimmune because myself and hubby both have an autoimmune disorder- she was screened for JRA last year with normal results, had all normal CBC, counts and various labs that my pediatrician ran. She went on the premise that if the joint pain was random, likely activity related, but I was ok with that since it wasn't yet persistent- NOW it is, and with my own celiac diagnosis, I thought maybe that was the piece of the puzzle!

She has never been tested for anything thyroid related, only the JRA. She is very healthy, always has been, no real symptoms other than the joint pain which does not keep her from activity, but persists mostly at night, knees primarily and she is always cracking and twisting her wrists and ankles, which I have asked her not to do, but my hubby does the same thing and says it's uncomfortable and instict to crack them to try and fix the discomfort.

I am jumping the gun because her biopsy won't be back till Tuesday so no reason I guess to be worried till then, I just felt so confused as he told me that she could have high tTG level, negative biopsy, and his conclusion is no celiac disease when I have it myself, just didn't make sense to me---- feels wrong to feed her gluten when her body appears to be reacting to it, just because her biopsy might be negative.

There is the possibility that your daughter is "on the path" to developing something, but the damage has not yet occurred (as another poster mentioned). Doctors don't normally see things in the earliest stages (where it would be best to CATCH things, IMHO). Docs get involved at the point of crisis.

She had a positive TtG which is a good test. I agree with you, why feed her gluten if it is causing her body an autoimmune reaction?

[Mom-of-Two]

UPDATE: Normal biopsy.

I am sure many of you understand my mixed emotions. Confused, overwhelmed, glad she does not have internal damage, relieved she may not have celiac, but confused about her tTG number being elevated and my GI telling me not to change her diet at this time. He feels she could develop it at any time down the road, that she could be one of those with latent celiac, due to her genetics and tTG test being high. However, in his opinion, retesting her tTG every couple years and monitoring her for any symptoms is the way to go.

Because I have read so much on this issue, I doubt everything- I know that children have notoriously normal biopsies, that she could have celiac and not have internal damage at this time, she is too young to have that damage, they missed it or the areas were spotty. So many variables.

I realize I could just put her gluten-free and see if some of her issues (non GI related) improved, like joint pain, etc. but I also don't want to be watching her like a hawk and adjusting her diet, filling out medical forms for school saying she has celiac disease, buying special Play Dough and making sure she has no expsoure to gluten, if she in fact is not having an autoimmune response to it.

Should I get a second opinion? Ask my own celiac doc? Have her tested with a full celiac panel instead of the tTG that this doc tested for?

My worst thought is treating her fine, when in fact feeding her something that could be hurting her, without our knowing it. As a mom, that is my fear of course. But, practical side says to also trust the dr, and his opinion, and not jump the gun.

[MTsky]

Wow, sounds a lot like what we are going through. My son had a positive blood test and normal biopsy. His primary symptoms were very poor appetite, very small size and chronic constipation. I decided to take gluten out of his diet anyway and I have seen dramatic difference in his appetite and he has put on 2 lbs and one inch in just 4 weeks. I am almost more confused than ever. I completely understand where you are coming from.

[Takala]

Did the doctor actually do the biopsy samples where they should be done, or not ?

Forgive me for being my usual self, but, if you think it is a nuisance to put your daughter on a gluten free diet IF A DOCTOR FAILS TO DIAGNOSE PROPERLY, as they do to hundreds if not thousands of people per year, then you need to rethink that, if it could make her feel better, as that is the actual goal of medical practice.

Worst case scenario: She feels better on a gluten free diet. You tell the doctor this eventually, and they then lecture you, because now their potential sick patient is not sick enough to test anymore ($$$$$$$). Well, too bad for them. They had their opportunity.

Second scenario: you have her go gluten free over the summer for at least 3 months, and see what her physical response is to it. Option A. She feels better. You then stick to the gluten free diet for her. Option B. She feels better. You have her go back on gluten for the next 9 months, and start chasing the merry go round of "official diagnosis." Option C. She does not feel any differently. (which means she still feels bad) Go back on a regular diet, and retest next year. Option D. She does go back on regular diet in the fall, and (surprise!) realize she does indeed feel worse while eating gluten. Holiday season in Nov-Dec with all that horrid gluten around from the "cookie-pushers" everywhere really should set the stage for a challenge. With option D, miserable child still eating gluten, then you can either try to get Well Respected Pediatrician to reconsider "officially diagnosing as celiac," (see my first question, did he get into the intestines and the duodenal bulb ?) or try to get another one to do so.

But, in summary, you do not need anyone's permission to trial a gluten free diet for your child, and see if there is a positive reaction to it. You are perfectly capable of observing her daily health.

Additionally, as one suffers more celiac type damage, the ability to digest lactose in milk decreases, so a reaction to dairy is probably going to start up, if it has not, already. And there may be additional food intolerances brewing.

Don't let any idiot in a white coat tell you that "joint pain" is normal. I have had "joint pain" now for about 40 years, and I have had morons for rheumatologist specialists tell me before they saw scans that I could not possibly have arthritis, because they could not believe that I have worked like a dog my entire adult life to keep my range of motion, as I have been trained to, after being properly diagnosed by a doctor who was neither a moron nor an idiot. (but showed me the x- rays ) I am sero- negative for all blood tests for inflammation. I am finally old enough I can now get blown off as having just osteoarthritis of aging, which is probably going to happen if I outlive my PCP (shudder...) or if one of us moves.

Oh, and my knees hurt like **** in my twenties.

[Mom-of-Two]

I see where you are coming from- I am not worried about the inconvenience of putting her on a gluten-free diet, in fact she is totally OK with it and we talked to her prior to the endoscopy about it. My point was just that I'm in a place where I have to watch every bread crumb or contamined food- if I need to be strict with her in that way as well, I need ot know what I am dealing with- I am in total agreement that joint pain is not normal, which is why I had her checked out last year, her pediatrician tested her with a rheumatoid panel at that time. I was just saying it would be nice to have a pediatric GI that supported the diagnosis based on her tTG level and family history itself, so that I could work with them in that way and have her retested, etc.

I just thought seeing another dr would put my mind at ease, but you are absolutely correct that the best "test" is to see how she does on the diet and maybe test her again in 6 months to see if that tTG went down.