Ok, results are in, what do you think?

[Meggie]

Ok, so Dr was very honest and said she doesn't know anything about Celiacs.

The blood test was borderline and I've been refered to a gasto. I had been refered anyway due to symptoms. Here are the results, so anyone in the know I'd really appreciate your thoughts since the GP was no help.

Total IgA : 2.2 g/l (0.7 - 4.0) so this was normal

Anti - tissue Transglutaminase IgA (anti-tTg IgA) : 3.6 U/ml (negative <2.0) (borderline 2.0 - 3.9) (positive > 3.9)

It said 'Borderline levels of tTg IgA detected. Significance at this level is uncertain. Consider HLA-DQ typing if clinically indicated. '

So what do you think?

I had been off gluten for just over a week and was only back on it again for four days, do you think that could have effected the result?

So if it's not actually celiac's, do you know what this level actually means, if anything?

Thank you very much in advance.

[aklap]

Hi Meggie,

Because the tTG tests are known to go negative when there is still damage of the villi present, it may be possible you have just enough damage to put you into the "borderline" area.

Elevated tTG levels can also occur in some other auto-immune diseases - Type 1 Diabetes, Hashimoto's Thyroid.

Genetic Testing: Many celiac experts feel that if you don't have DQ2 or DQ8 [the only 2 genes that are tested for], it's highly unlikely that you can't ever have CD. I'm not sure I buy into that.

The gastro doc may [should] do an EGD to obtain some intestine samples. Because damage can be patchy, make sure they take enough samples. 3 or 4 may not be enough to get an accurate reading. If you were to lay out your small intestine, it's the size of a tennis court! That's a lot of area!!

One well known gastro in the celiac world takes 15 or more samples just to make sure she has things covered.

http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=52&coded_category=Tests%20and%20Their%20Results&coded_category_id=4

[Meggie]

aklap, thanks.

I'm sure i don't have type 1 diabetes, but I'll have a search about the thyroid one... So basically are you saying that there's not really any other reason why that antibody would be that present? I'll try and get the gasto to take heaps of samples if he's open to discussion about it. Thanks again.

I haven't really shared my history yet. Sorry it became so long, but I wanted to share, hopefully I'm in good company.

After slowly slowly getting more and more sick over the past 8 years, really just thinking I was a weak, rubbish human being. Thinking I had personal issues, that I couldn't cope with life at all, I really thought I was somehow a weak substandard person with a bad constitution or something. It just crept up on me.

I was ALWAYS low in iron, even when I was on iron tablets, they just didn't seem to sink in somehow. I've always had bad skin, have been very weak, pale and with dark circles around my eyes.

After having three babies within four years, and some additional stress in my life, I developed what I began to think was post natal depression and anxiety. I had constant pains in my belly, and bloating, my food was always coming back up (not vomiting, just reflux) I've had a constant sore throat for 10 months, which sometimes feels ulcerated. Plus I've had about 30 mouth ulcers in the past year. Slowly over the past year Ive felt like I'm just not coping with life at all, constantly breathless and weaker than ever. I get strange heart palpitations, and my mind / head has been so foggy that at times I've wondered if I was awake or asleep, or perhaps I'd even died or something. I have felt like nothing was real or nothing mattered. I was unable to make eye contact wth people anymore due to my eyes going a bit wierd. There were times when I coulnd't actually make out what people were saying to me as I felt so confused and disoriented. I started seeing sheets of light sometimes out the corner of my eye. My speech started sluring a bit, and I noticed my whole left side was much weaker and sluggish compared to my right. Somtimes my belly was in such pain, I'd be doubled over. I went on Nexium which didn't help. I often felt as though I was going to lose consciousness, and often felt dizzy too. I also started to misjudge distances.

I started taking anti depressants and having counselling as even though I didn't really think I was 'depressed' I was at a loss and started thinking I really must be and the Dr thought I was a simple post natal depression case and very stressed. I didn't have anything to talk to the counsellor about because aside from how I've felt there really wasn't anything wrong. So I've had ultrasounds on my liver, and belly, uterus, I've had a CT scan for tumours, I've had an Echo on my heart, I've had my teeth checked (for the sore throats) (they found erosion of the enamel) I've had my eyes checked, countless blood tests. Seen a counsellor, thyroid checked, all fine.

Then I met a lady who'd recently been diagnosed with celiac's and she mentioned a few of the symptoms, described the pale brown stool's, and the greasy ones that stick to the bowl, talked about the mouth ulcers and bloating etc. I started to wonder, as I'd had these symptoms, then she mentioned being low in iron. I had not heard of celiac disease before.

Anyway, when I started googling I discovered that it accounted for all my symptoms except the sore throat. However bad reflux causes sore throats, so I'm thinking it could be that...

Anyway, I went to see a naturopath and it's been discovered that I have a pretty bad internal candida infection in my small intestine and possibly through my blood, which may have caused the nerve damage.

My liver function is bad.

Since being treated for my candida infection I'm feeling a lot better, the Naturopath put me on a strict gluten free, yeast free, sugar free, milk free diet in addition to the medication bits she gave me. So I went gluten free for nearly two weeks, but had to start eating it again to rule out celiacs. So I've kept up the rest of the candida diet, except I'm currently eating gluten again, and my throat is killing me again.

I've since looked at my Nana's health, my dad's health and my daughters health and thought, they really could all be celiac's too.... so although I'm dying to go gluten free once and for all, I'm also curious to get a proper diagnosis with the biopsy, not just for my sake, but maybe for my dad and three children's sake too.

The only thing is that there is a big wait for a biopsy, even though I've elected to go privately, so I'd need to keep up the gluten intake for a few months yet.

I'm really confussed as to what to do. I phoned my naturopath who is URGING me to stop the gluten right now, saying that it's doing me such harm especailly due to the candida infection, and now the blood's in and it's saying there are the antibodies there. She said to me tonight that even if I'm not celiac that I obviously have a huge sensitivity and need to be gluten free.

I just don't know what to do, I'm so torn, I really want to just get well NOW, not wait a day longer to go gluten free, I've been sick for so long, I have three little ones who need me to be at my best ASAP too, but I know I'll always wonder about the biopsy.....

What would you all do?

If you've got this far and read this big epic well done and thank you

[aklap]

I'm way short on time right now, I don't have time to back up what I'm telling you...

Low iron and out of whack liver panels are huge red flags for CD. If it were me, I'd not dismiss CD at this time. I'd do what I could to rule in or out CD.

Be back later...

edit to add: mouth ulcers are also a symptom of CD - one more piece to the puzzle.

Also - spend some time looking thru this blog: http://glutendoctors.blogspot.com/
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Meggie]

Al, that link was very very interesting, thanks.

I didn't know about the bad liver being a red flag, that is another piece...

I KNOW you are right, I do need to rule it in or out, I will always wonder if I don't. I just wish we could fast forward to the biopsy. It would also answer a lot of questions about my young children's health too.

I know I need to do it, but my belly is screaming out 'NNNNOOOOOO!!! No more gluten'.

I will take comfort in the fact that I'm not alone, and many many have been through / are going through this too, (not that I wish this on anyone, but I'm in good company)

[STZ]

When I was DX with Celiac my total IGA was 70 so the gastro doc had no doubts. I plan on the biopsy by the end of this year. He said he is only doing the biopsy to see how much damage there is and make sure there is not something else going on along with the celiac.
_________________
STZ
DX = Celiac
High ttg 3/2009
Biopsy positive 10/2009
GF since 3/2009
DX = Osteopenia
Bone Density Test 9/2009

[caseygirl]

Wow! I don't have much advice but I just want to say hang in there!! To me (and I'm definitely not a doctor) it seems like you have A LOT of celiac symptoms, in addition to almost positive bloodwork. I totally understand your want to and the importance of continuing eating gluten to get the endoscopy/biopsies. Is there a way to get on the cancelation list? Like if someone cancels their appointment, you can take it? Well, good luck to you!! We are here for support!