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Could I Have Celiac


mcs12

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mcs12 Rookie

Hi everyone!!

I have been lurking here for the past week trying to figure if I could possibly have celiac. These boards are wonderful!! My brother has known he has had a wheat allergy ever since he was child...they did not test for celiac back then. Because he is gluten free now, he hasn't been tested for celiac(even though he probably does have it). But, since learning that celiac is a genetic disease, my family has decided to get tested. I have symptoms such as bloating, constipation, fatigue, and just the overall feeling of not being quite right. I had blood drawn a week ago, but haven't heard back on the results yet. My doctor had to look up in a book what tests needed to be done, so I am already a bit skeptical if the tests come back negative if they are even correct. I have been contemplating going gluten free regardless of the results. Does anyone know how long it usually takes to get the blood tests back, and should I trust them? Thank you all in advance for your help. I am just at a loss. I feel terribly all the time, and if it isnt celiac how will I ever feel better?


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Guest nini

the tests can help screen for celiac, but they can never definitively rule it out. Positive dietary response is the most valid diagnostic test. So yes, regardless of your test results, try the diet and see if your symptoms improve. It takes an average of 6 months to 2 years for complete healing, so make sure you give it a good 6 months before you decide if it's helping or not.

Nancym Enthusiast

The blood tests usually only show positive if you've got severe intestinal damage from gluten sensitivity. If you want to figure out whether gluten causes you problems and nip it in the bud before your intestines are a managled wreck, then you can either try a gluten free diet for a few weeks or you can get tested by Enterolab. Or you can do both, that's what I did. I went gluten free then several months later I got tested by Enterolab. I knew within a few days of going gluten free I'd found at least one of my issues. Their test is sensitive enough it can detect antibodies even months after going gluten free.

Nancym Enthusiast

Oops! Posted to the wrong thread!

mouse Enthusiast

You can have a false negative on the blood tests, but you can never have a false positive. If you get a negative, you can always go gluten free to see if you improve. Some notice improvement in days and for some it takes longer. That does not mean that you heal as fast as you notice improvement. It takes time for the small intestine to heal - after all it took time to make us so sick. Welcome to the forum and am glad to know that we have already helped you in some way.

mcs12 Rookie

Thank you so much for your replies! I am going to cut out gluten starting today and see where that gets me. I am determined to stick to this in hopes of feeling better. It would make sense that celiac(or at least gluten sensitivity) is what it is considering my family history with stomach issues. My brother with the wheat allergy(maybe even celiac), my grandfather died of colan cancer, my uncle is bipolar and most likely has at least a wheat allergy but is far too stubborn and sick to really care. He and my grandmother both had major emergency stomach surgery(the name of the procedure escapes me right now). I plan on avoiding these major health concerns, and I think I have found the major culprit. Ah yes, and that side of my family is Italian, and I read somewhere that Irish and Italian heritage are most common with celiac. So, I am not waiting to hear about the blood test, I am starting today. If it does come back negative I will get the gluten sensitivity test by Entorlab done. Until then, I will trust my instincts. Thanks for all your kind words.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • 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
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • 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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