8 Year Old Awaiting Results

[macyashlynn]

My 8 year old just had the blood test for celiac today. I am new to this process and not sure what the steps are to diagnosis. My 25 year old brother was diagnosed 5 years ago and has very severe celiac (gluten and dairy free diet has helped but stress also is making him sick).

My daughter has had bowel problems for 5 years. Very loose and fowl smelling bowels. At time she cannot seem to control them. She uses the restroom immediately after eating, sometimes during a meal. She has bowel movements 3-6 times per day. She has lately been complaining of stomach pain (which is why the DR. is finally testing her).

My questions are for after the results. If the blood test is negative should I move forward with more testing? And if positive will more tests be done to confirm? My Dr. seemed to think that my daughter has the flu (for months on end???). He only ordered the test at my insistence.

Any advice and/or tips would be greatly appreciated.

Thanks!

[Arpita]

I'm sorry your daughter is so ill, and that's so hard on her and you. I would search online for some information, on this cite, on webmd, celiac.org, for starters. One issue is where the blood test is done (I think Mayo is good), and if you get all three tests. I would look into peoples stories here, as you will see that many have diagnosed celiac with negative results, and others are gluten intolerant and have improved with diet. It would be ideal to find a doctor who is more knowledgeable about celiac, or who at least is younger and where the doctor uses the computer to search for and enter information. What a drag when you have to be insistent at him doing tests! I would make sure to get all copies of the doctor's notes and tests. It is very informative to see what they write down and to look at the normal range etc. yourself. I have had errors with another health issue, and more than once had a doctor tell me its "nothing," and then see that on his chart, he wrote down "it could be..." but didn't tell me those considerations! I have more specific information on location of testing, etc. in my file, but I can't get to it now. Wish you both the best.

[EBsMom]

My questions are for after the results. If the blood test is negative should I move forward with more testing? And if positive will more tests be done to confirm? My Dr. seemed to think that my daughter has the flu (for months on end???). He only ordered the test at my insistence.

Any advice and/or tips would be greatly appreciated.

Thanks!

You need a new doc! The "flu" for months? That's crazy. With your family history and her symptoms, I'd actually be surprised to hear that your dd doesn't have celiac disease. If you have access to such, I'd look for a good pediatric GI that has knowledge of celiac disease. If the blood test is positive, the next step would be an endoscopy with intestinal biopsy. A positive biopsy is the "official" proof of celiac disease. Even if the blood test is negative, you could press for a biopsy. There are lots of people on this forum who've had negative blood tests and positive biopsies. There are also people who've had positive blood work with negative or inconclusive biopsies. There's rarely any black and white about celiac disease testing - only shades of gray, it seems. If the doctors aren't cooperating or you have poor access to them, you could always try your dd on a gluten free diet and see what happens.....but do know that she needs to be actively consuming gluten for the biopsy to be accurate. We took my 9 yo dd gluten free before I really even understood what celiac disease or the testing was all about, and she got better very quickly. We opted not to put her back on gluten for testing and so we don't have an "official" diagnosis. We did do fecal testing through Enterolab, which showed that she's gluten (and casein/dairy) intolerant, but honestly, it would be easier in some ways to have an "official" diagnosis. Whatever you choose to do, educate yourself as much as possible and be your dd's advocate (as it sounds like you already are!) Many (or most) doctors just don't have celiac disease on their radar in any meaningful way, so you pressing for the right tests and being knowledgable is very important! Good luck to you!

Rho

[cruelshoes]

My questions are for after the results. If the blood test is negative should I move forward with more testing? And if positive will more tests be done to confirm? My Dr. seemed to think that my daughter has the flu (for months on end???). He only ordered the test at my insistence.

Diagnosis generaly consists of 3 elements (with some variations):

-positive results on the bloodwork

-positive results on the biopsy

-positive results when removing gluten from the diet

Doctors are notorious for ordering the wrong blood tests and often don't do them all. PLEASE get a copy of DD's bloodwork results and post it here for the real experts to look at. Even if the MD says the bloodwork is negative, it may be because he did not run the right ones. Nobody here is a doctor, but there are many who have had their share of results, both positive and negative.

If the blodwork is positive, your MD will most likely refer you to a GI doctor for the endoscopy. Many times, a doctor will not give a diagnosis if the endoscopy is not done. I had the endoscopy done on my then 6-year-old son, and would do it again if I had to. This is a lifetime diet, and I wanted the diagnosis behind me. Also, if you want to get a 504 plan for DD while she is in school, you will most likely need a diagnosis.

Keep your chin up! There are people here to help and answer questions.