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I Do Not Understand This...

VydorScope

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VydorScope Proficient
VydorScope
Posted

OKay here is a list of known facts...

1) My 21month old son has had a major improvement with diet change to gluten-free. In short all symptons gone. His biposy and blood test were both inditive of celiac disease, IMO but his doctor is not due back in town till tommorow for the offical word.

2) My Maternal Grandfather had all the classic symptons, and could not handle wheat products in his diet, but died before celiac disease testing was "the norm" - strongly suspect he had it.

3) Simular story with his mother, add Ostoprosis (spelling optional :D )

4) I have anemia, bad. I am talking almost ZERO Iron in my system, unless I keep up 300% extra iron in pills, plus eat a ton of iron rich foods, then I just bearly make the mark. NO explaination found in 2 years of testing. I am a 30 year old male, I should not be anemic. Just started gluten-free diet, need more time on that.

5) I get the classic pain, gas, etc few hours after I eat somthing with gluten in it.

6) When I did an puesdo-gluten free diet (Aktins) I had signifgant health improvements all the way around.

Soo all of that how can my blood test be normal? I going in for an endoscopy tommorow, but this result has surprised me to say the least.

I just do not understand this. :( I

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flagbabyds Collaborator
flagbabyds
Posted

If you were on the Atkins diet, you were cutting out a lot of gluten from your diet, and that is why you felt so much better. If the biopsy tomorrow is negative, I would say to go on the diet anyway because you know that it helps you. The test was probably negative because of the significant amount of gluten that you have cut out of your diet witht the Atkins.

VydorScope Proficient
VydorScope
Posted
  • Author

Welp in few hours I go in for my endoscopy. All I can think about right now is how hungry and thristy I am!

Guest nini
Guest nini
Posted

I believe that the tests can only tell you for certain if you do have it, but if the tests are negative, it doesn't necessarily mean that you don't have celiac. There is still so much that Dr.s don't know about it, and IMO the tests are really only accurate if there is already a significant amount of damage, if you've already been primarily gluten free, your body could have had a chance to heal enough for the tests to be negative. I would go on how do you feel on the gluten free diet? does it make a difference in the quality of your life? if so, stay on the diet!

skbird Contributor
skbird
Posted

Hi -

I was on a low carb diet for more than two years before going gluten free, then went gluten free for nearly 6 months before getting EnteroLab testing done. I figured that would still notice antibodies as I did eat some gluten during low carb days, esp. right before going gluten-free as I was adding a bunch of whole grains back into my diet (and feeling progressively worse!). But I ended up getting a high normal result on those tests (9, <10 is "normal"). I also didn't have any malabsorption, thankfully.

I'm guessing a doctor wouldn't diagnose me as being Celiac but I know that I need to stay off gluten. Celiac, or that which affects the gut and leaves damage, is only the tip of the iceburg of autoimmune disorders that gluten aggravates. I have two genes that indicate gluten sensitivity, and while neither are the classic Celiac genes, this result for some reason helped prove to me that I do need to follow a gluten free diet for the rest of my life.

If you follow a strict gluten-free diet and see symptoms improve or go away, that should be enough to convince you. Likewise, if you have children who have to eat gluten free, why not do it with them? :)

I felt about a thousand times better when following Atkins - that is when I wasn't buying the faux-carb pre-made stuff. Ugh, the breads were the worst and like 90% gluten at that!

It's confusing at first, even being able to accept this as an answer but you will find as you go along you are more confident about what you need to do to make yourself feel healthy.

Take care

Stephanie

Ruth Enthusiast
Ruth
Posted

Wondering how your endoscopy went... My blood tests were normal, too. I also had severe anemia as my major symptom. My endsocopy showed I clearly had celiac. My daughter had no symptoms, but positive blood test, and edoscopy.

Everyone is different... blood tests are not foolproof!

The gluten-free diet has cured me of many health issues --- who knew I could feel so good!

All the best,

Ruth

VydorScope Proficient
VydorScope
Posted
  • Author

I have no idea how my endoscopy went. :D My wife tells me it went well , and that they said we would hear back from the bisopy in 3-5 days. So back to waiting again. I take extra long to come put of anthesia, in this case the procedure was over at 203, and I did not wake till 509. Thats why she comes and brings a note pad to write everything down that happens. :)

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Guest gliX
Guest gliX
Posted

i was diagnosed with celiac two years ago

but for blood tests..

my brother's numbers were high (meaning likely to have celiac)

mine were low (meaning likely not to have celiac)

and it turned out he didn't have it, i did

weird

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