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 When my mom took Emily to her appointment they told my mom the referral was out of date and has to go back to our pa to get a new one.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

First of all HUGS.

I'm glad you all made it through the biopsy. I would definately try to find another doctor. It's also nice to know that your family is behind you as far as a gluten free diet. That takes a lot of stress off you I'm sure. As far as her blood work....if she is positive than at the very least she is gluten intolerant which still means gluten free for life. I would continue to try and get ahold of the numbers. There are others on here that know the numbers and whether they are positive or not.

Thanks for a quick reply. Yes I will be getting those results by friday. I want to see them she did not give me any numbers or anything. Thats what i was so mad about. what is she hiding. I know she mess up because of five years ago. may be she is covering herself or am i being porinord.????

Jodele

We made it though the biopsy!!!!!!

I am going to ask to see a different dr. I hate this one. Right before she did the biopsy and ask more questions and now she said that she did not think Emily had celiac Emily has more of the constipation than ds so she do think Emily does not have it because of that. I looked at paper of hers and it had on it FAILURE TO THRIVE on it. Why did I not be told of this. I hate that diagnose. I was smaller than Emily at her age. She is a lot taller than me at her age. Emily has a heart murmur and Dr. had to know that because she had Emily’s records. I think she lost them from the first time we went in. I am going gluten-free for the whole family. I was thinking of what the school will do with out a dr. note about having celiac. I am so tired of mis diagnoses I am going to get to the bottom of it. I got my whole family on my side ready to go glutton free. Even my sister and her kids. We will not get the results of the biopsy until Thursday or Friday. Sorry to vent to everyone. It gets frushting dealing with dr.s and they treat you like you don't know which way up. I even asked to see the blood results and she would not give them to me. And explained vagely what they found in her blood. I almost lost it. I have done a lot of researches on this and I know about the testing and I asked the dr. if Emily has positive blood test does that mean that if she does not have celiac she was an intorant of wheat right. she said no had she would be alright to eat wheat than. Is it true that if you have a positive blood test that you have a reaction to gluten (wheat)? That’s all I have read. Well hope you can under stand this rant Thanks again for all your suport though this time in our lives. I will post her results by friday and I am going to ask to get a copy of her medical folder. They can not deny me there.

Jodele.

HI everyone.

We are going to have Emily's biopsy done on Tuesday the 25th. I am very nerves. I had my tonsils out when I was 14 and I had a bad reaction to the anesthesia and almost died. They found out afterwards that I had a defective liver and did not work right. The liver is what cleans that stuff out of your system and the Dr. said it could be inherited. But, I think Emily is going to do fine because it will be done at OU children's hospital. They are the best in the state. I can not wait to go GH soon. My youngest this morning had the thowups and Ds but she did not have a temp and is acting good now. Thanks for all the responses and your ideas. I am going to do the biopsy on Emily and after that I think I will only do the gene testing for everyone else. I know that if you have the gene you may or may not have celiac disease but why take that chance better to be GH than not. We can live with out gluten. I want to be healthy once in my life and I don’t what my kid to go though life like I did. Like I said before, such a simple solution to a whole lot of problems.

Jodele

Thanks for your replies. I was up till 3 in the morning doing this post. At first even with my husband thought I was crazy that Emily had it. But he is coming around and thinks going gluten-free is the thing to do. My sister asked me to day if racing pulse is a symptom for celiac because both of us have that problem. When I was 19 my heart rate was 120 sitting still. The doctors never found out why. It still happens to do that. Last night Emily eats 2 pieces of bread and she had a bad stomach ache today. It is going to be hard on all my kids this year at school and any info for dealing with school issues would be great. Thanks again. Nancy you are funny. I did not notice that I was the 10000 member. I will update Emily progress and any new info that will come about. We have not told in-laws yet.

Thanks a lot.

Jodele

P.S I can not write very will because Dyslexia runs in the family too. (Wonders shall never cease Low folic acid when pg causes that and also club feet and spinabifia.)

Hi I am a newbie and I have 3 girls. My oldest girl is 8 and she is very small for her age. Her weight is 40lb and her height is 3' 6". She was 2 weeks over due and weighed 5lbs 15 oz. and she hardly gained weight until she was 8 mths old and at that time she weighed 8lbs and she gained a pound a month after that. So at a year old she weighed 12 pounds. This did not worry me because I was a small child and grow the same way she did. The only different was that she had very bad case of reflux. I had breast feed her until she was 6 months old. None of her Doctors was worried about her smallness because I said it runs in the family that you are small or you were giants. (Not joking my cousin is 6'4" and weights 350lbs.) Either you are 5'4" or under, or you are 5'10" and above. So I thought she was the small side of the family. (I am the smallest alive right now at 5'1".) We come from German and Irish decent. Sorry guys my mom and I are the genealogist of the family. Back the rest of the story. Emily my oldest also had constipation and the runs all the time. I did not think any thing about it because my mom told me that runs in the family and my sister had been diagnoses with IBS as a baby. So we thought it was that that we had. Emily was very healthy other than that. Her reflux was what that worries me. Because her biological dad had severe reflux and had esophagus damage. I did not want that for her in the future so when I moved to Oklahoma (she was 2yr) I was sent to the Stumic specials and that doctor was not worried about her reflux and was worried about her size. She tested her with different test and my mom took her back to the doctor for the last appointment but the referral was mess up and they could not see her. With everything going on at that time (I was pg with my second daughter and working full time) I did not feel that we needed to go back. The doctor did not call and tell me the results of the testing. I had the results for the reflux already. So let’s fast forward almost 6 years later and 2 more daughters. The end of the school year Emily she started to have very bad stomach pain that keep her home and bad reflux problems. Emily loves school and hates to miss it, she lay on the couch for 3 days and it scared me very bad. So I got a referral to a specules agian and guese what it was to the same doctor. We had to wait for 2 months to see her. So we went to see her July 3 and they made new folder for Emily. The doctor remembers Emily and asks me if we did any testing and I said yes and told her exactly what I told you. She went and got Emily's test results and told me that she was negative to all test expect one and that could be a false positive for celiac. She wanted to run another test to check it again. I am thinking that this was just like last time and she was looking for something else that was not there. This time celiac was something I heard about but could not remember what it was. I thought it was allergic to something but did not know what. I call my husband and he recalled a show on discovery channel and told me that it was gluten in wheat and he said that was not what she had because that is was very bad and Emily would be in a lot of pain and be wasted away by now. So I got on the internet and did some researcher. I found out that you can have a degree of symptoms. I look at all of them and could not believe what I saw. I pick out so many symptoms that I said to my mom that this is a case book of our family for 4 generations. Emotional problems, IBS, bone pain, asthma, rashes, smallness, fatigue, and much more. I was a very sick kid and now I a so tired all the time. I know my family will lesson to me and my mom is going gluten-free now but my husband side I am worry about. They believe very much in prayers and God. I do not think that the new diet will be good for the kids. Of course I live right next to my mother-in-law and my family lives in NM. My family has been sick for along time and will adapt to the right diagnoses better than my husbands side. Any advice will be appreciated... I know this is what is wrong with us. I have been so sick but I thought it was because of my depressions and arthritis and I am only 33 yrs. I have had chronic sinus problems since I was 7 yrs. and had asthma when I was 13 also had arthritis in my knees at that time also. Now I have bouts of the runs and bad stomach pains. I just had my appendices out and still have pains. I feel that I am falling apart I am a terrible mom I feel because I am so tired. I can not wait to go gluten-free. We are waiting to do Emily's scope and final diagnoses before we all go on gluten-free. My youngest is small like her big sis and she still has a pot belly and now she is complaining about stomach pains and she has had the constipation and the runs since birch. My middle daughter is in the 90 to 98 percentile growth and weight but she had emotion problems and she has the same bowl moment like the rest of us. I am getting them all tested. What test is the best to do for this? I am going to be tested my sister is going to be tested and her four kids. I am so glad to find this web site. Thank for letting me vent and let it all out. Please let me know if you think this is what I think it is.

Jodele.

Ps Such a simple fix for so many problems.