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Trying To Eat gluten-free, Had Blood Test, Negative


nom

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nom Newbie

Hi Guys,

 

I'm trying to decide what to do here, so perhaps thought I'd ask if anyone had been in a similar situation.

 

Through process of elimination, I worked out on my own that I was having a reaction (typically GI symptoms) whenever I ate products containing wheat.  I put myself on a Gluten Free diet, and inside of a week found significant changes in sleep patterns, energy and a complete absence of athsma symptoms I had suffered from for years.  After a particularly bad couple of weeks of what I thought was gluten cross contamination (I eat out a lot), I decided to get a blood test done, just to see if anything showed up.  I just got the results today, and it came back as a "1", which is within normal.

 

Now, given I had been trying to eat gluten-free for ~ 2 months prior, this could be a meaningless number.  On the one-hand, a non-zero number makes me think it's a positive although week.  On the other hand, I thought it'd be much higher since, based on my symptoms, I'd had a pretty bad couple of weeks.

 

As my doctor said, getting some numbers on a piece of paper, or a biopsy isn't going to tell me anything I don't already know -- gluten, or at least wheat, makes me sick.  What I don't know, however, is what value there is in actually having that number in the first place.

 

Should I make myself sick to get a positive diagnosis?

Should I just concede that I likely am coeliac and just continue doing what I'm doing, knowing I won't ever get a positive diagnosis?

 

Really not sure what to do here... 

 


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w8in4dave Community Regular

Well you don't know that you weill never get a positive Dx. But I say if what your doing works for you!! Then do it!! Like your Dr. Said "You already know" So really if it was me? Why put your self thru it? When I first got my DX that said I was negative, I just decided to go on a non processed food diet!! Lil did I know the Dr.s office would call and say I did have Celiac. So yea I'd stick with the celiac diet and go for making your self healthy!! 

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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