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The Doctor Just Called This Moring. Lots Of ?s
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I'm new here and confused! My just turned 7 year old son tested positve on his first blood test two weeks ago. The results from the second test when they tested for more antibodies came back today negative. I'm not real clear on what this all means!

Here's some background info. When Luke was 1 he was on antibiotics for a year. Even in utero I knew he was a very, very active child! We refuse to have him tested for ADD because we don't want that on his record. And we homeschool anyway so we won't give him the drugs. For the past 6 months or so he has been complaining of a tummy ache. And it keeps getting worse. And that his bones hurt. I started journaling things and it always happens after meals. We already know he is sensitive to dairy, red dye #40 and white refined sugar. He is tall for his age and very, very, very skinny! The doctor did not want to test him because he is 50% for weight and she insisted that Celiacs are always below the charts and not even on them. And he's too old to be tested! I insisted and she finally gave in. I could hear the shock in her voice when she called me with the positive results!

Anyway, now we have the first test as positive and then he tested negative for the next 2 antibodies. This doctor is not our regular doctor and she didn't explain things well at all. I KNOW there is something not right with my son. She suggested doing a gluten elimination test with him and see if he improves. Can he be gluten or wheat sensitive and not Celiac? If I make him gluten free should we see results relatively soon? I welcome any advice you have!!!

Anne

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Hey Anne,

It would be helpful to know which antibody tests came back positive and which did not and exaclty what the numbers were to better answer your question.

It is possible to have a gluten sensitivity with out having Celiac disease.

Isn't it a pain how the doctors are unwilling to test for this unless they see those 'classic' symptoms?

My little two year old is finally going in for an endoscopy next week, he has been having trouble since last June.. when I took him to the GI he was totaly dismissive until we reintroduced gluten and he had a reaction.. so we have had to have him on gluten for the last 2 months..

My oldest sounds just like yours! He is 8, skinny as can be and ADD.. I also homeschool. I am waiting till this test on the 2 year old and then we will get the other ones tested..

A great book for you to get is

Kids with Celiac Disease by Danna Korn. It explains alot and has been helpful to me.

Again knowing what tests came back as what wil help us answer those other questions.

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Thanks for the reply! I called the office to ask what was positive and what was negative. The nurse said the anti-gludin antibodies were postive and the anti-endomezial antibodies were negative. They couldn't remember the other negative and the tests weren't at that office. Sorry about butchering the spelling!!!!

Annie

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Annie, my new little grandson was diagnosed at about 2 months with gluten sensitivity and allergies to milk and dairy, through Enterolab. It was so painful to see him suffering each time he drank his formula. By 6 months (and off all gluten, milk and dairy) he was at the 90th %ile for height and the 75th%ile for weight. He thrives, as long as no one accidentally gives him forbidden foods. I'll be hoping that your little ones thrive too. Welda

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    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
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