Need New Doctor For My Girls

[Jodele]

My DD is 8 and she has a positive blood test and we just got her biopsy done yesterday. I know that this is what is wrong with her, my other girls, and the rest of my side of my family. I need to find a better dr for her than the one we have had since she was 2 1/2. I will tell you our story in short form.

Emily has had very bad reflux since she was a very tiny baby (5lbs. 15oz. and 2 weeks late). She grows very slowly and that did not scare me because I was the same way as of my mom too. I thought it was in the genes that we were small. Funny thing is that if you are not small in my family you are a giant. (My cousin is 6ft 4in and 350lbs.) I moved from NM to OK after my divorce and Emily's new dr. sent her to GI to check her reflux. At this time I was working and was pg with my second dd. This dr. was more worried about her size. The dr. ran a lot of tests and did some more test. The last appointment I could not take off from work so my mom came from NM to take her. I all ready had some of the testing results and they came out normal. When my mom took Emily to her appointment they told my mom the referral was out of date and has to go back to our pa to get a new one. I was mad it is not easy to take off work to take care of thing that the staff should have done in the first place. I know Emily’s reflux was under controlled so I told my mom that "don’t worry about it I will keep a good eye on her."

So let’s skip five years to now. Emily started to have bad time with her reflux so I went to the doctor to see what we could do for her. She sent her to the GI again and I ask to see a different DR. this time because I did not like the late one. Fun fun went to see the same one again. It took almost 2 mths to get an appointment and when we got there and saw her she ask if we had seen her before and I said yes. She said that was funny they made a new folder for Emily like she was new. The doctor ask if she ran test on Emily and again said yes a lot. So the dr. went to find the old results of all the testing. She came back and said that Emily passed all the test except one and that was one of the one of the celiac test. She also said that that one could be a false- positive. So she order more blood test. Why did she not call me about that one? I said ok did not know a lot about celiac but I remember a program on discovery health channel that had to do with celiac. The Dr. called me that following week and gave me a result of the test and said that the one that was there before was ok but there is a positive of the one that is more reliable. So the Dr wanted to do a biopsy.

OK now yesterday was the day of the biopsy. Emily need to get there at 8:30 and we did not see the dr. until 11:00. The dr. asked me so more questions like what she was eating and how she was he bowel movement was. I told her that she has had ds and she is mostly constipated. Then the dr. said that constipation was not a symptom of celiac. I was getting mad at this point and ask to see Emily's blood results and the dr. looked at me and shut Emily’s medical folder and started to explain what was in her blood and it could be or may not be celiac. I was getting madder by the second at this point all I wanted was the number on that test. I wanted to know how high the number was. Then I ask her this question. “IF you do not find any thing with the biopsy even with a positive blood test would that me Emily has at lest a gluten intolerant. Right" Then the Dr. said no Emily would not have any problems with wheat of gluten at all. I was upset and did not want to make Emily even more nervous so I let it go by and got out of there as fast as I could. We let her do the biopsy and we are waiting for the results back, should be back by tomorrow of Friday.

I have a feeling that it will come back fine. From everything I have read that a positive blood work show that there is a problem with gluten, right and be should be taken out of the diet. I believe this dr. don’t know what she is talking about. First of all she should have called me of the results the fist time we were seeing her. Second, she treated me like I did not know anything at all. So I am looking for a Dr. in Oklahoma that knows what they are doing and takes soonercare. We are low income and I can not work with all my problems myself ( which will get better when we go gh) but we are making every penny last because my husband makes to much money, we don’t get help except for the girls medical, which I am so grateful for. I am so frustrated with all this right now and would be grateful for any ideas. Thanks for letting vent and tell my story.

Jodele

[plantime]

The saddest part of your story is that it keeps getting repeated, with only the names and locations changing. If your daughter's bloodwork was positive, then she is at the very least intolerant. As young as she is, I don't know if there would be enough damage to show on a biopsy. You are welcome to come on this board and vent away!

[CDFAMILY]

Jodele,

I am so sorry this doctor is so difficult. Apparently this doctor has not read the most recent information about biopsies....they can only rule in Celiac Disease, not rule out....because of the patchy nature of the damage.

My Gastro said I did not need a biopsy because of high positive AGA, EMA and tTG but I opted for it since I was the first in the family to get diagnosed. My primary doctor diagnosed my 18 year old when we did a challange and she became severely anemic in just a couple of months and her number were still not positive but they had doubled and she was a DQ2/DQ1. She did not eat much gluten even during the challange so it was hard to get the positive that some doctors would require. My doctor also new how sick I was and still am and did not want to see my daughter become me as she was already so symptomatic. (She had had a negative biopsy 4 months earlier)

Have you thought of writing on the Oklahoma Celiac Message board? They may be able to direct you to a better doctor or at least give you some direct support if you live near their meeting place. You can find them at Open Original Shared Link

Next, you need to request all test results. Your doctor has to give you copies if you ask...it is the law. What I do is, when I am checking out I say please give me copies of all her recent tests. Another good idea is to write down exactly what your daughter is tested for so you know if you are getting all the results. You could call the office and ask them to give the results over the phone. Ask for the name of the test such as tTG IgA, ask for the range and ask what her results are. Also ask for results of any flagged items. This would give you instant info, but I would still have them send the results to the house.

When you get the results you can post any flagged items which might show other problems that this doctor is not familiar with. I recently asked for a 2002 blood workup a rheumatologist did of my 18 year old. I just found out she was IgG deficient and was never told.

Your pregnancies sound like mine. My babies were always ultrasounded early because they thought they had died in the womb as I was always so small. My last one, the 18 year old had interuterine growth retardation...she stopped growing for a couple of months and I was put on complete bed rest for the remainder of that pregnancy.

I are a good mom to keep working toward a resolution to all your family's problems. I wished I had had an inkling that Celiac Disease was in our family as I could have saved myself and my children years of distress.

[Jodele]

Thanks for you reply and thoughts on this matter. My sister she just called her kid's Dr. and just talked to him over the phone. He jumped right on it and he had my sitter take all her kids to do the blood work pronto. He is a great Dr. I wished that I stayed with him but the drive is too far for me to take them to him. Gas prices are too much. I think I will call and try to get a hold of my kids PA and see if she will do that for me. I have an appointment for my other two kids and myself on aug. 15. I would love to just go GH right now but I want to test the whole family. I will be getting Emily's whole medical record form the GI's. I can not remember all the tests they ran on Emily the first time we saw that Dr. But I will look to see if any thing might be missing. I just so mad at the Doctors in Oklahoma. My DH almost died last year form a gallbladder. It almost took them 2 months to dx him and 5 trips to the er latter. One of the er trips just dose him up with pain killers and sent us home. By the time that it was dx his pancreas was dissolving. Luckily we caught in time and I kept asking every DR. to see if it was his gallbladder. I went thought this with my mom and it took a year and a move to NM to fix her. I just hate these dr that think they know everything and just make you feel stupid and you are right in the first place. We knew that it was the gallbladder each time and no one wanted to lesson too us. I am sorry that I am just ranting right now but I just called the GI and found out that she was not there and I would not find out about the biopsy till tomorrow even thou she said that it would be in today. but I guess that I can wait till tomorrow any way. Well thanks again for all your support. I will post Emily's results we I get them.

Jodele