Oldest Daughter Positive For The Blood Test And We Are Waiting On The Scope To Be Done.

[Jodele]

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.

[eKatherine]

She's already had a positive blood test, right? That is a test on which there are no false positives. The doctor is completely wrong about that. Not only that, but the doctor was completely irresponsible by not telling you her test results, which may have lasting consequences for your daughter's health. (My first thought was sue...)

I say dump the doctor and go gluten-free now, the whole family. Get Open Original Shared Link tests done on your own. Keep your own household gluten-free, and let the situation with the inlaws work itself out. Perhaps when they see how much healthier you are, they will be willing to accept the situation.

[Nantzie]

HEY!!! It's member # 10,000!

TWWEEEETTTT!!!! Da-da Da- DAAA!!!!!

(Confetti, Streamers, Camera Crew, Cheesy News Anchor...)

Sorry. I've been noticing that we were about to hit member # 10,000. It just reminded me of the thing they used to do at stores where they would wait for the 10,000'th (or whatever) shopper and have the local news crew there to present the person with an oversized certificate for a lifetime supply of canned ham or something odd like that.

........

Anyway, you all have really been through the ringer and I hope the above made you smile and not hit the ignore user button.

I would be completely shocked if it wasn't celiac or gluten intolerance. Your own situations sound a lot like me. Being so exhausted and basically held hostage by my bathroom problems. Before I found out about celiac disease, it was all I could do to stay awake (even after drinking tons of soda or coffee or an energy drink) long enough to get to my kids' naptime, when I would usually sleep too if I wasn't too wired from the caffeine I was chugging just so I wouldn't accidentally fall asleep while my kids were tearing around the house (although I was so tired I just wanted to cry). Bad mommy guilt to the 10th degree. We never went anywhere because I had to be close to the toilet because I never knew when the D would start, and I'd only have about 20 seconds to get to the bathroom. There were a few times where I had to push my kids out of the way to run to the bathroom in time, which is only 10 feet away. I also had really bad pain over the last few years that I never got a diagnosis for.

After going gluten-free, the diarrhea went away, the exhaustion went away, and the pain went away. To be honest, my depression and anxiety went away too. I still have problems and losses and issues, but it's not that at the end of my rope feeling that I was struggling with my whole life.

I hope all that and more for you and all your family. I think so many people don't figure this stuff out, or don't even question it because it's something that is normal for entire families for generations and generations.

Well, I'm very glad you found us here.

Now that you've figured out that celiac could be an answer for you, all you have to do now is figure out what to do with all that canned ham.

Hmm... Is that stuff even gluten-free??

Is it even really ham??

Hmm.....

Nancy

[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.)

[AndreaB]

I too, wouldn't worry about anyone outside your household. Go gluten free as soon as you can. Don't want to go gluten free in they want to run more tests though. It sounds like everyone of the girls and yourself would definately benefit from the diet. We used enterolab, they are pricey though and I don't know that insurance covers it. We paid for it ourselves on credit card because we wanted to get it done. www.enterolab.com if you want to check it out.

Welcome to the board.

[chrissy]

jodele----our ped gi just runs the TTg test (tissue transglutaminase). it is the newest test available and is relatively inexpensive---especially if you have insurance.

[Rikki Tikki]

Welcome to the boards. I think you have one of 2 options, go gluten free right now. The other one would be to have the whole family's blood tested for celiac. The thing is that when I was first diagnosed my folic acid was low just as you said yours was.

I don't much believe a person needs to have the biopsy if the blood test comes out positive. If I had been told that the blood test was positive before the biopsy I probably would not have gone through with the biopsy, only because I don't like being put under.

Of course if several years ago the doctor had not said well, your test shows positive for a little known disease called celiac, which is so rare I am sure you don't have it I may not of spent so many years so ill, but that's another story for another day and we all have them

As I was saying get on it right away, don't let the disease get out of control. Best of luck to you and welcome to the boards, I can't believe there are actually 10,000 people on now, wow

[TCA]

You might want to consider getting a celiac panel before going gluten-free. Prometheus labs is the one we used. It's covered by insurance if you have it. I'm sure your dr. would know of a local lab. That way you won't doubt your diagnosis.

[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

[Rikki Tikki]

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

Hi Jodele:

Best of luck to you and your little one. You will be in my thoughts and prayers

[maggee]

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

Jodele,

My son had a gene test at 5yo that came back negative. Unfortunately, it took another year of illness - he does have celiac. I feel that absolute proof positive is the results of a gluten-free diet. Yes you can live without gluten. Since it sounds like your whole family would benefit, right after your tests - try the gluten free diet. I would recommend you just have your whole family gluten-free at first. I tried to do both gluten-free and G and all the juggling and attempting to avoid cross-contamination wasn't worth it.

As a result we all stayed gluten-free and are much healthier for it.

It will be tough getting started so at first I would suggest to keep it simple (dont try to cook muffins from scratch right away ). And use this forum - it is a great place for information - I only found it recently but it still provides great info and advice. Good luck to you and your family.

Maggee

[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.

[AndreaB]

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.

[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

[penguin]

Legally, they have to give you records if you request them. Go back to the doctor and demand them. You'll have to sign a release form, but they have to give them to you. Report them to the state if they don't.

[Jodele]

He everyone.

I am going to talk to our family dr. today to get a refural to do a blood test for celiac for my self and 2 of my 3 girls. I was wondering witch one would be the best to do. My oldest was tested and i dont know witch one she got done. I am trying to be pro active now and get a little pushy but I need to know I little more about the testing. I have a copy of the test requisition form and there is 3 tests for celiac on it. here they are.

1. Prometheus celiaPLUS

5-marker serology panel and genetics combined NOTE: if anti-human tTG IgA, anti-emdomysial IgA, and anti- gliadin IgA are negative, Prometheus CeliaGENE will automatically be performed.

2. Prometheus CeliaGENE

(Genetics only) HLA DQ2/DQ8

3. Prometheus Celiac Disease Serology

(Hu-tTG) IgA recombinant antigen, anti-endomysial IgA, anti-giladin IgA, Total serum IgA, Anti-Giladin

IgG.

I think my oldest did the CeliaPlus she was positive with one of the IgA becuase they did not do the gene one. I will be getting a copy of all her test my next week. If anyone knows with test would be the best one please let me know. would be grateful. thanks again.

Jodele