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Told To Eat Gluten


suzie c

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suzie c Newbie

Ihave gluten sensitivity and have been told I don’t need to stick to a strict gluten-free diet.

Also my blood test was normal. They tested for autoimmune antibodies and vitamin deficiency and I was told that I would have these if I had celiac and so a biopsy wasn’t needed.

I`ve been ill for a long time so I’m worried that I might need other tests


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Guest nini

there is no harm in trying the diet 100% and sticking to it for at least a few months to see if your health improves.

I believe there is much more to gluten related illnesses than just celiac. If your health does not begin to improve at all, keep searching for an answer. But if your health improves on the gluten-free diet, than why not go for it? It's a very healthy diet.

cornbread Explorer

I suggest you get retested with a stool test:

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bluelotus Contributor

who are these doctors anyway? i wish there was a way of reporting them for ignorance/ineptness. in my field, if you do something stupid, you are held accountable and license is revoked.

CeliacMe Rookie

How do you know that you have gluten sensitivity if you bloodwork is normal? I believe with cornholio- if the diet works- follow it. You may need tests for other food sensitivities/ allergies. Make sure you go to a doctor who is familiar with celiac and celiac testing. I don't know what you doctor tested for. Just because you don't have antibodies in you blood doesn't mean that you don't have Celiac. It just means your body has developed antibodies to cope- you may still have intestinal damage. I've heard Aloe juice is good for that. You should read dangerous grains. It will educate you that any doctor who says gluten is okay is an idiot! GLUTEN IS POISON FOR EVERYONE!

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      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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