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Still Eating Wheat


jknnej

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jknnej Collaborator

hi guys,

I decided, since I can't get tested (upper endoscopy)until March due to my busy work schedule, I'm going to eat a small amount of wheat per day (like one graham cracker)so I don't become too sensitive. after all, my blood test was positive but only one of the three panels was positive. I do think i have celiac disease, though, since my tummy has felt much better since stopping wheat. Or even if I don't have celiac disease I must have an allergy to wheat. But i do have all these other weird symptoms since i went OFF wheat which is the exact opposite of many of you who get them when you actually EAT wheat. i've been having tremors, light headedness, fogginess, vision changes, a little nausea sometimes, every once in a while hearing my heartbeat in my ears. This week my back has been tender to the touch and little spots on my body feel bruised. weird. i don't know what the heck is happening and neither do the doctors!

I mean, if I test negative, then I have been going thru all of this for nothing. I don't want to have to reintroduce gluten after two months, I think I would be very sensitive at that point and it would be a lot harder.

what do you guys think?

I'd love any advice! Jennifer


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celiac3270 Collaborator

If you're going to get a positive endo., you need to eat a lot more wheat than one graham cracker a day...and you should start as soon as possible eating it so that you can mess up your intestines enough for the test.....I know that sounds terrible. Of course, your other option is to not have the endo. at all, which is fine as long as you believe that the bloodwork is correct, are willing to stay on this diet your whole life, and won't doubt that you have celiac years in the future...it's a tough choice, though, if you have terrible symptoms. It was easy for me, because I was just diagnosed with bloodwork when a biopsy was recommended...so I just had to stay on wheat a couple more days, but the damage was already done.

jknnej Collaborator

the only reason I am doubting the blood work is because only one test came back positive out of the three and my doctor told me that means only a 50% chance of celiac disease. He said if all 3 came back it would be, like, 97%.

I've only been gluten-free for two weeks and before that I ate wheat all the time so I'm pretty sure my insides would still be messed up.

What do you think?

celiac3270 Collaborator

Oh, sorry...I thought you said you had been gluten-free two months :D ...yes, I'm not a dr., but I think that would suffice.

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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? 
    • Wheatwacked
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    • RMJ
      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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