New Here... Negative Results?

[preshington]

Hi everyone! This is my first post here and I have a few questions. I was diagnosed with anemia (Iron) and started taking supplements. I got retested and mi TIBC levels grew larger while everything else dropped. My ferratin level is 8, really low. I just got my Celiac panel test done at Kaiser and it came back negative. I still think this is wrong, but I have no clue. I also have hidradenitis suppurativa. I did some reading on that and it said that many sufferers of HS are gluten intolerant. Could I still be Celiac? I also read somewhere that kaiser's levels were high, is this true?

TTG

Open Original Shared Link

Iron

Open Original Shared Link

[tom]

Kaiser only tests those 2 for celiac? Yikes I thought most places did 5 now. Actually even they did all 5 and all were negative, it's no guarantee that gluten isn't the problem. This place has no shortage of sero-negative ppl whose greatest health stride was going gluten-free.

So yes, you could be celiac still, or NCGI (non-celiac gluten intolerant, which may as well be the same thing from the patient point of view).

I suppose you've been reading other threads - tons of great info here.

[beachbirdie]

Hi everyone! This is my first post here and I have a few questions. I was diagnosed with anemia (Iron) and started taking supplements. I got retested and mi TIBC levels grew larger while everything else dropped. My ferratin level is 8, really low. I just got my Celiac panel test done at Kaiser and it came back negative. I still think this is wrong, but I have no clue. I also have hidradenitis suppurativa. I did some reading on that and it said that many sufferers of HS are gluten intolerant. Could I still be Celiac? I also read somewhere that kaiser's levels were high, is this true?

TTG

Open Original Shared Link

Iron

Open Original Shared Link

Are those the only tests they did?

They have done insufficient testing.

You need a total serum IgA, and gliadin antibodies (deamidated gliadin peptides IgG, IgA). They also should do anti-EMA.

Are you having symptoms?

[preshington]

I know right? I thought there should be more tests done. I asked my GP to order me the extra panels along with the test to show if I am deficient in any other minerals. I suffer from anxiety, eczema, abnormal periods, and am lactose intolerant. I do get mild cramps when I eat bread, and those last for a couple hours. I also wake up nauseous every morning. IDK if that is a symptom or not.

[beebs]

All of those can be symptoms, I'd be getting a full panel done, although as tom said, this place is full of sero-negative people (myself included) who gluten is deffo a problem for.

[preshington]

Waking up nauseous is a symptom?

[beebs]

well, some people are nauseated all the time. Waking up nauseated can be a sign of many things, including stomach ulcers and stuff. Has the Dr asked you any questions relating to that? There are over 300 associated symptoms with Coeliac disease - which is why its so hard to diagnose, some people have none, some have few, some have many etc.