Advice and or help proceeding tests

[Gorwel]

Hello

I’m hoping someone can help shed light on results I’ve recently received . I’ve been experiencing Diarrhea sometimes urgent as little as 1 hour after eating almost 6 months daily now bloating pains and gas  that’s really been taking over my day to day routine so I visited my doctors who ran some tests. 

I was called back to my doctors regarding ttg iga results  . I went back but was only able to see a nurse practitioner who was rather vage and in summary told me the tests said  celiac but not really true celiac and to remove gluten from my diet.. and that’s the end of that . yes I’m confused . Since I’ve spend considerable time reading here and elsewhere online . I feel like I should go back request a different doctor and additional tests or clarification before committing to a gluten free diet. I’ve never honestly thought of even heard of coeliac before but after researching a lot of the symptoms I feel I relate too . Which has worried me more .

Ive attached a photo of the results in hope someone can tell what negative positive or anything in between might be as it doesn’t say.

Any advice would be grateful and I could supply any additional information if relevant .

Thank you

 

[Fenrir]

I would ask to be referred to a GI or ask to have and EGD with biopsy done. 

You do have a slightly positive TTG IgA which would indicate celiac disease. You also have slightly elevated liver enzymes which is another common thing seen in celiac disease. Your  Dr./Nurse may not know that there's no such thing as "not true celiac", you have it or you don't and most people with a positive TTG IgA have celiac disease even if it is slightly elevated. 

Did you stop eating gluten before having the tests or cut back on it? Sometimes that can cause the anitbody tests to be weaker positive too. 

 

 

[Gorwel]

35 minutes ago, Fenrir said:

I would ask to be referred to a GI or ask to have and EGD with biopsy done. 

You do have a slightly positive TTG IgA which would indicate celiac disease. You also have slightly elevated liver enzymes which is another common thing seen in celiac disease. Your  Dr./Nurse may not know that there's no such thing as "not true celiac", you have it or you don't and most people with a positive TTG IgA have celiac disease even if it is slightly elevated. 

Did you stop eating gluten before having the tests or cut back on it? Sometimes that can cause the anitbody tests to be weaker positive too. 

 

 

Hi thanks for your reply,

I have been avoiding things such as pasta and bread or pizza for a maybe a month or more Before the test but not to purposely avoid gluten just because they cause more issues for me I hadn’t made a connection at the time .

May be worth noting.

i had since the test reluctantly tried(wife insisted) gluten free bread and pasta For a few days and wether it was placebo or not I did have less bloating/cramps and a more regular bowl movement except they floated which I found odd . I then went back to regular bread for a sandwich shortly before bed and woke up urgently early hours of the morning.
that for me has confirmed an intolerance I think anyway

 

thanks again

[Fenrir]

If you want to get the results to show celiac you have to be eating at least two pieces of regular bread a day for a month or so before the biopsy. If you are eating low gluten it can cause the tests to be negative or weak. 

[Gorwel]

1 minute ago, Fenrir said:

If you want to get the results to show celiac you have to be eating at least two pieces of regular bread a day for a month or so before the biopsy. If you are eating low gluten it can cause the tests to be negative or weak. 

Ok so If I were to start eating two pieces of bread at least from here on and see another doctor to arrange a biopsy which I can’t imagine happing for at least 6 weeks . I would have a true reading give or take ? I will request and referral to Gi/biopsy anyway but I would hate to go though that to get an inconclusive result Due to not eating enough.

thanks again

[RMJ]

I think your TTG results are negative?  It looks like yours is 1.7, with a normal range 0-10. 

Your total IgA is just barely high - no big deal.

The complete celiac panel was not run, there are also DGP antibody tests available.  Some people are positive on those but not TTG.

[Gorwel]

5 minutes ago, RMJ said:

I think your TTG results are negative?  It looks like yours is 1.7, with a normal range 0-10. 

Your total IgA is just barely high - no big deal.

The complete celiac panel was not run, there are also DGP antibody tests available.  Some people are positive on those but not TTG.

That was my main confusion, most people show tests with notes of what’s negative < and > positive mine don’t. I would have guessed neg or low but they read the results and called me in over them so that lead me to believe something other than negative ? why call me in to discuss results and tell me cut gluten out other wise .hmm logic might not be in play here 

I’ll arrange to see another doctor to discuss them but I’d be interested to hear others thoughts 

[Fenrir]

Whoops! Yeah, had an issue reading the results sideways. Looks pretty negative now that I look at it again.

It still could be you haven't been eating enough gluten and like RMJ said they didn't run all the right tests either. 

[Gorwel]

Thank you  for your replies.

not sure wether to feel relieved at that or not. I’m half tempted to just switch to a gluten-free diet and forget about it . But knowing me I’ll later regret not pursuing more tests to rule out(or in) ceilac before i did. That’s just me I like black or white IN between causes me ludicrous anxiety’s and frustrations.

i Appreciate  you guys talking time to reply 
 

seems I have to make up a decision of starting a gfdiet or not and ask for some more tests ? Should I still ask for biopsy 

[RMJ]

I think I’d ask for the full panel of tests prior to having a biopsy, and stay on gluten until the tests are done.

I’m guessing the nurse saw the slightly high total IgA and got that mixed up with a celiac test.  The total IgA test is just a control to be sure that the TTG IgA test is valid.

[Fenrir]

Yes, no need really for the biopsy if you don't have any positive tests, IMO. 

[Zenith]

On ‎2‎/‎28‎/‎2020 at 12:25 PM, Fenrir said:

If you want to get the results to show celiac you have to be eating at least two pieces of regular bread a day for a month or so before the biopsy. If you are eating low gluten it can cause the tests to be negative or weak. 

But that is insane and sadistic. I was eating gluten and NOT having hardcore symptoms, and just so happened to take a test that showed I had celiacs basically,  and I choose NOT to go in reverse and to never go to mainstream docs again. Well I chose that since I was age 13 to never go to mainstream docs.  For me that would NOT be an option to go back to eating  a piece of bread which is  168000 PPM of gluten. SO the mainstream docs can kiss my booty. I have my test results then two years later KNEW It was true.  NOW I can't go in reverse.  I can spot another celiac now.  Like the one at the bookstore. lol  I have good celiac-Dar.