Saw The Doctor Today - More Confused Than Ever

[ce-wyant]

I called the doctor this morning about my 3 year old daughter - She had some testing done a few weeks ago and the doctor told me that the blood levels indicated celiac and she needed to start the diet, plus she wanted her to see a pediatric Endocrinologist and a Pediatric GI specialist. I called her back today because I haven't had any luck getting quick appointments and after reading things on here, I wondered why she told me to start the diet without having a biopsy done first. Anyway, after complaining this morning, they got us in at 1:00 with the Endo doctor. I tried getting an appointment with the GI specialist they referred me to, but they are not taking new patients and are booked up until July, so I am looking for a new one. When we saw the Endo doctor today, she does not thing Elizabeth has Celiac, she thinks her problem is severe constipation and under eating. She took an Xray and it showed that she is very constipated. She was on Miralax for 6 months, but went off when she started going everyday, since she had more problems, so she just went back on 5 days ago. I am thinking this is why the Xray shows constipation. The doctor said she did not want her on the gluten free diet and does not think we need to see a GI specialist right away. She want me to take her to see a nutritionist and come back in 6 months after the constipation is under control and see if she has gained any weight with her "new" diet from the nutritionist.

I am so confused - I called my pediatric doctor tonight and asked what the blood levels indicated. She said the tissue one came back negative, but the Gliadin level came back at 49 and it should have been 30, so that is why they said it indicated Celiac. I know I need to keep her on a gluten diet in case we have more tests, but 6 MONTHS - I find that a little ridiculous. They treated me like I don't feed my child. These people have never met me and know nothing about my family, my daughter eats tons of food and is very happy. I am hoping that it is true that she doesn't have the disease, because I know it would be a life long struggle and commitment, but it angers me that they are making me wait 6 more months to find out any further testing. At that time, if she has not grown, they are going to re-test the blood levels.

Does anyone know if these levels mean anything? Is it standard to not have Celiac disease if only one of the tests show positive? They told me that being severly constipated would elevate these levels.

[ptkds]

IMO, you should just do what works for your dd. You don't need a dr's approval to put her on the gluten-free diet. My ped told us that my dd's blood levels indicated Celiac and referred us to a pedi GI dr. The GI dr called it "toddler diarrhea" and said he didn't think it was celiac disease. But when I tested positive for celiac, I took my dd off of gluten. She has been doing so much better. And I can tell when she has been glutened.

Just cuz the dr went to med school doesn't mean they know all about celiac disease. Either take her to the GI dr and get a biopsy done, or just put her on the gluten-free diet and see what happens. My ped is just fine without my dd having a biopsy and is satisfied w/ the bloodwork results alone. She completely supports my putting her on the diet.

You just do what is best for your dd, not just what 1 dr tells you to do.

Good luck!

ptkds

[Juliet]

That's a bunch of _______ saying she's just constipated and underfed! When my son started getting seriously ill from Celiac Disease, he was constipated for days on end, then it would be hard for one bm, then extreme diarrhea for the next 3 episodes and the whole cycle would begin again. It was a 5-7 day cycle. Our pediatrician at the time considered it "toddler diarrhea", too, and that all was in the realm of normal. In the meantime he started deteriorating dramatically, only awake for a total of 3 hours a day, losing more than 10% of his weight in a month and a half and in pain anytime anything moved in his bowels.

When he was finally hospitallized (after I insisted with our then pediatrian that he see a pediatric g.i. because he STILL did not believe there was much of a problem, and then insisting that the g.i. doctor who couldn't fit us in for 2 months fit us in that week or give us another name of a doctor who would - we got in that week) because the g.i. doctor thought there was a problem and an ultrasound found some fluid in his abdomen, lungs, and around his heart, they did an x-ray and found that he was very "constipated" - he was blocked up because his intestines were inflamed. This did not, of course, explain the weight loss and lethargy but it was a beginning. They ran several tests and only two came up as abnormal - his liver numbers and the IGg levels. They sent him out of the hospital, a biopsy was scheduled for two weeks later. We got him on the diet right away because our g.i. doctor told us it took up to 6 months to heal so if they could find damaged areas, it would still be damaged within the two weeks of waiting. They did find "proof" that it was Celiac Disease, and by that time he had already re-gained his energy and started gaining weight. In fact, he gained back all of the weight he lost in 3 1/2 weeks of being on the diet - only about a week after being told he definitely had the disease.

Hindsight being 20/20 and knowing as much as I do now, as I said in another post, I probably would not have bothered with the biopsy and just stuck with the diet. The results were so dramatic in such a short amount of time, although I tried to convince myself at the time that it wasn't Celiac, it honestly could not have been denied, especially since now if he gets the smallest amount of gluten he's sick within 2-3 hours. And to see him now as a strong, healthy, extremely active and healthy boy, I'd take this anyday.

So, after this long post (because hearing these sorts of things from doctors after what we've been through angers me to no end), the point of the story is go with your instinct! You know in your heart whether or not what you were told is right. If you think this doctor is wrong, follow up with the g.i. right away, find one who can fit you into their schedule, or try the diet now. If it is Celiac Disease, you'll see results. And just to emphasize my point, doctors can make seriously wrong judgements. I was also hospitallized when I was only 8 weeks pregnant for excruciating pain near my ovaries. An ultrasound was done that night and they found the baby but could barely read anything because of so much fluid everywhere. One on-call doctor that night who never came in thought I ruptured a cyst and to just deal with pain management for the night, but nothing was written down. The next morning an OB/GYN showed up, told me he saw the ultrasound and my chart and because there was no heartbeat for the baby we should schedule a DNC for the miscarriage. I told him that that wasn't what I understood to be happening and that this might be premature. So he said we could always ere on the overly cautious side and schedule another ultrasound in a couple of days. So 31 weeks later I gave birth to my daughter

[taweavmo3]

Yeah, I'd be a little confused too! Just curious why the ped wanted your daughter to see a Pedi Endo?? Honestly, it's hard enough to find a pediatric GI who is well informed regarding Celiac, so I would take an Endo's advice in this matter with a grain of salt.

I also agree that asking you to keep your child on gluten for six more months and see a nutritionist is a bunch of crap. I would call your pedi again, and insist that they find a GI who can get your daughter in sooner. They are there to help you facilitate these things. Six months is a ridiculous amount of time to wait when you have a sick child. If no one is helping you get the ball rolling sooner, you can always just start the diet. Our official diagnosis for my daughter has not really made one bit of difference for us. Once we got the dx....the GI doc was pretty much finished with us. He did one more follow up blood test, that's it. We had two follow up visits, in which he did nothing but ask us how we are doing on the diet. I drove 45 minutes for him to ask how the diet was going.......so I waited all that time for what exactly??? LOL. I have all my kids gluten free now, and I haven't had any problems at all with my 8 year old being gluten free at school w/out a doctor's note.

This is all just my opinion of course, so you can take it or leave it! But your daughter is at a very crucial developmental age right now, and feeling sick all the time has a significant impact on that. If you can't find a doctor who gives you answers, find one who will. It takes some looking around, just like every other profession, there are the good and the bad. Good luck!

[ce-wyant]

Thanks for everyones opinion. After I called our ped doctor back last night and demanded I get an appointment with a GI doctor, I got a call today with an appointment for Thursday at 1:30. Even if they can't give me any other answers, I think I will just start the diet and see what happens. Another good thing is my sister-in-laws dad is a GI Specialist (for adults), but I am going to have all of Elizabeths records faxed to him for review, I just want another opinion from someone I can trust. We will see what he says about her tests results.

[gfpaperdoll]

Be sure to get a copy of the blood report for your records. I would not put the child thru a biopsy for a diagnosis. A positive blood test is a diagnosis.

Also, little effort to just test thru Enterolab. About $369.00 for the poop test for dairy, gluten & the cheek swab for the gene test. You will save about that much in gasoline money running around to the doctors getting their ignorant responses. Constipation is a problem in my family, we all have double DQ1 genes.

At this time I would also test any other children and the parents - remember some people have it and have no symptoms.

And OF Course always listen to your motherly instincts & don't take the BS from the docs.

[rez]

A POSITIVE BLOOD TEST IS MOST ABSOLUTELY NOT AN OFFICIAL DIAGNOSIS. I'M SORRY, BUT THERE ARE MANY OTHER CONDITIONS THAT CAN ELEVATE AN IGA TEST. THE MOST SPECIFIC FOR CELIAC ARE EMA AND TTG. YOU MOST CERTAINLY SHOULD SEE THE PEDS GI AND I ABSOLUTELY WOULD NOT START A gluten-free DIET UNTIL THEY HAVE FURTHER EVALUATED YOUR DAUGHTER. GOOD LUCK. I'M SORRY TO BE SO PASSIONATE, BUT I HAVE PERSONAL EXPERIENCE. MY SON HAD A POSITIVE TTG AND WE HAD THE BIOPSY YESTERDAY. HE ALSO HAS ANOTHER CONDITION GOING ON IN HIS STOMACH. A SEPARATE CONDITION. THEY ARE ALSO LOOKING INTO CROHN'S DISEASE. IT IS SO BENEFICIAL TO LOOK INSIDE TO REALLY SEE WHAT'S GOING ON. IT IS SO IMPORTANT TO RECEIVE THE BEST, MOST ACCURATE, DIAGNOSIS SO THAT THE TREATMENT CAN FIT THE DISEASE. GOOD LUCK! :)

[chrissy]

antigliadin tests are no longer routinely indicated because they are not as accurate. i agree with rez about getting a better diagnosis than that. i wish my kids did not have celiac disease and would take it away in a heartbeat if i could.

[jayhawkmom]

Ce-Wyant, I commend you for taking such a pro-active approach to your child's health and well-being. I am glad you are able to get in sooner, than later. I can understand how frustrated you are, totally!!

We went through all sorts of things with our daughter. Initial exams indicated nothing wrong with her. So, we went to the allergist. Tests confirmed allergies to wheat, eggs, and milk - we kind of already knew that. (She's also allergic to peanuts, but that's a whole other issue) Her allergist was concerned about sinus pressure, so he sent us for a CT scan. We were then sent to an ENT - who said our daughter's maxillary sinus cavity was full of "gunk" - and he was certain that was the reason behind her tummy aches... infected post-nasal gunk making it's way down into her stomach.

Her tonsils and adenoids were removed, and things improved quite a bit. However, once she started eating "normally" again, the tummy aches started again. She was 27 lbs on the day she had the surgery, that was 2 months away from her 5th birthday. Once we had removed the allergenic offenders from her diet and her tonsils/adenoids were removed, the tummy aches persisted so they decided to do Celiac testing.

All of parts of the test came back as high as they could be without going out of range. (ie: reference range 1-11 - her's were all 10's) All except the IgG, which was 72 - almost 7 times the high end of the reference range. Our pediatrician sent us to a pediatric GI and advised us to "cut back" on gluten, but not to remove it all-together. As soon as we did that, her tummy aches became less violent, and less frequent. The vomiting stopped. She started getting color back in her skin.

We had to wait many weeks for our GI appointment. Her GI had said that he wanted to do an endoscopy in a few weeks, but once he got ahold of her Celiac panel results, he rearranged his schedule to get her in ASAP.

They found inflammation in her duodenum - as well as ulcerations, and no obvious villi damage. Her GI put her on Prevacid to help heal the ulcers - and instructed us to start a gluten free diet, even before he had the results of the endoscopy. They took 6 (or 8, I can't remember) biopsies, and none of them had any "obvious" villi damage. Therefore, no Celiac diagnosis.

However, within days of starting the gluten free diet, she started to GROW!! Her health has improved exponentially - it's quite amazing. In the first 6 months, she'd gained 6 lbs and grown 3 inches in height.

We are working with a dietitian/nutritionist to make sure she's growing proportionally - and healthfully.

So, whether or not your child has Celiac disease... perhaps a gluten free diet will help. I just wanted to share my story because you seem very frustrated, and this is a very shaky boat to live in. And, if I can provide support and encouragement to one person - I've done my job for the day. =)

Keep doing what you are doing... advocate for your child. =)

[ce-wyant]

I wanted to thank everyone for their concerns and comments. We saw the GI doctor today and received good news. After reviewing her lab results he said that he is absolutely positive she does not have Celiac. He said that the antigliadin levels were a little elevated at 49, but that is an old test they don't rely on anymore because it can test wrong 50% of the time. He said that they also tested her using the new tests and they all came back negative. He feels she is going to be a small child and just has some constipation issues and since she seems to do well with the miralax we are going to keep her on it for 3 months and see if it improves. After that they may test her again.

I feel much better now because this doctor seemed to know a lot about the disease. He told me he had seen many cases of it and assured me he did not feel she had it. He did suggest putting her on a high calorie diet to help her gain weight, but he said her weight and height were fine. He had a diet specialist come down and talk to us and gave us recipes for high calorie drinks and shakes. I am going to try them and see if we have any results.

So, for now we are going to keep her on a normal diet and check her again in 6 months. I feel better knowing that the test results came back the way they did.

Thanks again to everyone.

[CarlaB]

I'm glad your daughter doesn't have celiac.

Does she drink enough water? Seems basic, I know, but I thought I'd ask.

Does she take vitamins? Magnesium helps with constipation and so does C.

Stewed prunes seem to work better than dried ones (just boil them for a few minutes and leave them in the water in the refrigerator).

Does she consume dairy products? If so, maybe cutting back on those would be a good idea as they can be constipating.

My sister is a little person ... she's a good 6 inches shorter than I and 8 inches shorter than our other sister. One of my children is tiny. Below average in size can be normal. I'd worry more about the constipation, which also may be why she doesn't want to eat as much. I know I'm not hungry when I'm constipated!

Good luck with this!

[rez]

I'm so glad that you found a good doctor. It helps so much when the physician is well educated. Good luck with everything.