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So Upset...

zebaldwin

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zebaldwin Explorer
zebaldwin
Posted

I hate to rant here, but I am almost devastated right now...and I just need somewhere to vent :/

I got hopes way too high and got my blood work back today...normal.

He did the "all inclusive" test and my level was 4 when "somewhat intolerant" was over 20...

I dont know what to think. I know there are false negatives, but Im just at the bottom right now. He is going to pursue a GI with me to do any other tests we can.

I mean, is it possible to have a 4 and still be celiac or gluten intolerant?

My symptoms are mainly brain fog, headaches/migraines, mild sporadic gi issues and weakness in my hands and legs...

I was just hoping this was it so much, and seeing all the positive stories I got myself excited too soon.

Any input or encouragement would mean the world to me.

Zack

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ravenwoodglass Mentor
ravenwoodglass
Posted

Yes it is very possible to have negative results and still have a problem with gluten. This is especially the case, I think, when the issues with the gut are still sporatic or it is systems other than the gut that are impacted. Believe me I know how you feel. There were so many times that doctors gave me the bloodwork thinking that I was for sure celiac and then told me that 'no your bloodwork is negative so that's not it'. It was devestating and the doctors relying on that blood work cost me a lot of years of progressively worse damage. My best advice to you is to give the diet a good strict try after you are done with testing. Do be aware that if you choose to get an endo it could be positive but it could also be a false negative. How much more testing you do before doing the diet is up to you.

JenniLu Newbie
JenniLu
Posted

Open Original Shared Link

Read this article about "leaky gut" and if you haven't had the genetic HLA-DQ test, you could try that next.

Takala Enthusiast
Takala
Posted

Quite possible to not ring up positive on the blood tests and still progress to really messed up to where they acknowledge all the other side effects but still can't give out the Official Diagnostic Seal of Approval

AerinA Rookie
AerinA
Posted

My blood work was normal... I don't care. I feel so much better already, and I have too many symptoms in common with celiacs/gluten intolerant people to be coincidental. You know what's best for your body, just because the science can't "prove" it yet doesn't mean you can't keep doing what you need to do to feel better. You're the best judge of what's best for you. :)

zebaldwin Explorer
zebaldwin
Posted
  • Author

Thanks guys...

My doctor is really pushing to do more with a GI...and my parents also want that. I just want to start the diet and figure out if this is it once for all. I see him again tuesday, I guess I'll see what he says.

Thanks again!

(half the reason Im hoping gluten is the problem is how amazing, encouraging, and helpful this site is!)

cassP Contributor
cassP
Posted

I hate to rant here, but I am almost devastated right now...and I just need somewhere to vent :/

I got hopes way too high and got my blood work back today...normal.

He did the "all inclusive" test and my level was 4 when "somewhat intolerant" was over 20...

I dont know what to think. I know there are false negatives, but Im just at the bottom right now. He is going to pursue a GI with me to do any other tests we can.

I mean, is it possible to have a 4 and still be celiac or gluten intolerant?

My symptoms are mainly brain fog, headaches/migraines, mild sporadic gi issues and weakness in my hands and legs...

I was just hoping this was it so much, and seeing all the positive stories I got myself excited too soon.

Any input or encouragement would mean the world to me.

Zack

you said your result was "4"? which result? TTG? or Antigliadin? there's also an EMA test...

there's those 3.. and you only got one- dont be discouraged that you dont have any answers when you only had 1 test done.

if you look at the test results in my "signature"- you'll see only my EMA was a solid positive. my TTG was "weak", and my Antigliadin were Negative.

dont give up yet- and dont forget the false negatives. Gluten Intolerance is a HUGE iceberg, and the medical community is only getting thru the "tip" right now.

you should get a more complete panel done (while eating enough gluten)... or like others have said- just go on the diet and see-

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mushroom Proficient
mushroom
Posted

It is possible for the full panel of celiac tests to be negative and for you to still be gluten intolerant. There are actually more gluten intolerants around than there are celiacs, according to Dr. Rodney Ford. And they need to be gluten free just as much as the celiacs. They just don't have the piece of paper with the diagnosis "celiac" written on it. Wait until you have seen the doctor, talked over the results with him and see if he will do the biopsy, but if not, I would start the gluten free diet right away. I think you may be pleasantly surprised at the results. You can do this without any medical instruction or permission, just s you can do Atkins or any other diet.

Marlie Apprentice
Marlie
Posted

I can say my family member was negative for tTG IgA, EMA IgA, Anti Glidian Iga and IgG, genetic tests, but positive on both Deamidiated Gliadin Tests.

mushroom Proficient
mushroom
Posted

I can say my family member was negative for tTG IgA, EMA IgA, Anti Glidian Iga and IgG, genetic tests, but positive on both Deamidiated Gliadin Tests.

Yes, these are the tests Rodney Ford recommends.

zebaldwin Explorer
zebaldwin
Posted
  • Author

Thanks again everybody! It's just so hard to get your hopes up...it can be very dangerous! And I have not given up yet.

I actually gave my doc the list of tests that was recommended on this board...but he said there was a new, "all inclusive" test...I think it was the IGA levels, not 100% sure. When I see him on tuesday, I am going to see how long going through a GI and all that will take...if it's too long, I think I will just start the diet...

Once again, thank you. I hope I can become a lifelong member of this community!

Marlie Apprentice
Marlie
Posted

Thanks again everybody! It's just so hard to get your hopes up...it can be very dangerous! And I have not given up yet.

I actually gave my doc the list of tests that was recommended on this board...but he said there was a new, "all inclusive" test...I think it was the IGA levels, not 100% sure. When I see him on tuesday, I am going to see how long going through a GI and all that will take...if it's too long, I think I will just start the diet...

Once again, thank you. I hope I can become a lifelong member of this community!

I believe the newest tests are the Deamidiated Gliadin Peptide (DGP IgA and IgG). It is called the Gliadin Test which is a very similiar name to the Anti Gliadin Test which is a completely different test.

I hope you feel better.

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