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I'm Confused Now

Kitty Cat

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Kitty Cat Newbie
Kitty Cat
Posted

Okay can someone please explain this to me? Now I think I have a gluten sensitivity and went to the doctor. Had blood work done and it came back negative for Celiac disease. Now what or is there a difference between a sensitivity and Celiac disease? My doctor assured me that this test is 95% accurate for Celiac disease but he never said anything about sensitivity. The other thing is that I could have gallstones in my stomach and that

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi Kitty Cat,

I'm sure somewhere on this site someone has detailed the difference between gluten sensitivity and Celiacs. I don't have an official answer. I think this can be a very hard disease to diagnos. I think some people cannot get a true biopsy diagnosis, but try the diet and feel better.

Another option for you is Entero Labs. You do not need a dr to order a test from them. It is a stool sample test.

When it comes to the gallbladder, many celiacs have had their gallbladder removed before getting a diagnosis of Celiacs. I am one of them. If I had it to do over again, I would insist on a endoscopy biopsy before having my gallbladder removed. At minimum, get a test through Entero Labs before having the gallbladder removed.

As for the diet, unfortunately this diet is all or nothing. I imagine you have gone through some pain and suffering and are pretty frustrated with feeling miserable, which is why you asked for the celiacs test in the first place. If you think you have a sensitivity to gluten or celiacs, try to the gluten-free diet at 100%. The reason is you feel awful now. They will take to you soon about removing your gallbladder. Why endure a surgery and problems with fatty foods for life without trying a diet change first? Write down all of your symptoms and problems. Then try the diet at 100% gluten-free for a few months. See what happens. You may not have any change. You may feel dramatically better. Your mysterious pains might go away for good. Once you have been gluten-free at 100% for a few months, eat some gluten and see what happens. Most people start seeing changes within a week or two.

I doubt people will be mad at you if you go gluten lite, we have all been there. If you decide to go gluten lite, just keep the thoubght of going 100% gluten-free in your mind. Or go gluten-free in phases if that is easier for you. Phase 1, food. Phase 2, cosemtics. Phase 3, kitchen appliances.

Good luck. And read up on Celiacs or post more questions on the forum.

hathor Contributor
hathor
Posted

Celiac is a subset of gluten sensitivity.

Here is another thread just started on the same subject. I posted there a link to a couple articles that should help you.

Open Original Shared Link

Also, as I'm sure people here will point out, there are false negatives with blood tests.

mommyagain Explorer
mommyagain
Posted

95% accurate? That seems WAY high! If that were really the case, celiac would be extremely easy to diagnose! A LOT of people on this board have had negative bloodwork, followed by a positive biopsy. The biopsy is still the "gold standard" for diagnosing celiac (in the medical community). On this board, the gold standard seems to be, do gluten-free for a couple of months. If you feel better, you're probably celiac or gluten-intolerant. The difference between celiac and gluten-intolerant has been discussed several times, but the treatment is the same... a gluten-free diet!

Why are you resistant to going 100% gluten-free? I know it can be intimidating at first... but if it can keep you healthy, it's totally worth it!

hathor Contributor
hathor
Posted

(Unless I'm confusing the two terms ;) ), accuracy measures what percentage of those with a positive result actually have the disorder. Sensitivity is a measure of what percentage of those with a negative result do not have the disorder. My understanding is that the blood tests are highly accurate, meaning that if you have a positive result you most likely have the disease. However, they aren't that sensitive, meaning that a negative result doesn't necessarily mean that you do NOT have the disease. In other words, there are a significant number of false negatives, but not false positives.

I recently read the sensitivity figure for blood tests and it wasn't that high. I wish I could remember what it was. Perhaps someone else will have the figure at their fingertips. I can't even remember where I saw this.

Kitty Cat Newbie
Kitty Cat
Posted
  • Author
Why are you resistant to going 100% gluten-free? I know it can be intimidating at first... but if it can keep you healthy, it's totally worth it!

Yes it is I guess having a hard time giving up the veggie sandwich down the street and pizza. I'm sure with the veggie sandwich I can bring in my own bread. It's a family owned place and I'm sure they would work with me.

One big difference I can tell not eating gluten in my breathing when I run. Last weekend I ate bread and such and had a horrible run on Tuesday. It might be mental but I like it.

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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