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Celiac Simplified?


pricklypear1971

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pricklypear1971 Community Regular

So, after reading and reading this is how I'm going to keep myself sane.

1) gluten intolerance exists and is widespread and underdiagnosed.

2) digestive intolerance is usually labeled celiac if there are visible proof (bloodwork, endoscopy).

3) any other gluten intolerance (proven by gluten withdrawal) is labeled "intolerance".

4) DH is usually called Celiac if proven by biopsy.

5) genetic testing can indicate a predisposition to varying types of gluten intolerance (including celiac).

The only reason I'm trying to "prove" the problem exists in me is to convince other family members to explore gluten-free, in hopes of relieving any suffering they are experiencing due to gluten. I don't wish this on anyone!


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pain*in*my*gut Apprentice

So, after reading and reading this is how I'm going to keep myself sane.

1) gluten intolerance exists and is widespread and underdiagnosed.

2) digestive intolerance is usually labeled celiac if there are visible proof (bloodwork, endoscopy).

3) any other gluten intolerance (proven by gluten withdrawal) is labeled "intolerance".

4) DH is usually called Celiac if proven by biopsy.

5) genetic testing can indicate a predisposition to varying types of gluten intolerance (including celiac).

The only reason I'm trying to "prove" the problem exists in me is to convince other family members to explore gluten-free, in hopes of relieving any suffering they are experiencing due to gluten. I don't wish this on anyone!

Yes! I have been trying to wrap my head around all of this stuff, too. I agree with #3, but it may be difficult to find a doctor who would acknowledge gluten intolerance without the usual proof. There is a huge information gap amongst doctors regarding non-celiac gluten intolerance. :angry:

I have decided that I don't need a doctor to tell me I have a problem with gluten (even though I have a little bit of "proof" with a positive blood test). At first I was so stressed out about a possible negative biopsy next week. But it doesn't matter if I have full blown celiac or just an intolerance, the end result is the same.....NO MORE GLUTEN FOR ME BECAUSE IT IS MAKING ME SICK! Luckily I don't need a doctors rx to go gluten free! :P

I told my brother last week that I have one of the genes for Celiac disease, and that he might want to be tested to see if he has the genes (he even has symptoms, but tested negative for Celiac antibodies 2 years ago). He completely blew me off, and said "If I had a disease that was destroying my intestines, I think I would be sick as hell". I ended it there.....some family will be receptive to testing and learning all about gluten intolerance, and some won't. Just do the best you can and get you fixed first! ;)

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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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