21 replies to this topic

[josie656]

Hi just wanted to ask advice as there look to be some very knowledgeable people here. My story is a bit long sorry in advance!
Jan 2007 Big flare of Ulcerative Colitis lands me in hospital. While there, blood tests come in that show positive for Celiac. I don't have exactly what was tested. I was put on a gluten free diet. It seemed to make some sense to me.
Feb 2007 I have a gastroscopy which comes back negative. I am told after all, I don't have Celiac. (looking back and after further research I don't think the conditions can have been correct. I only reintroduced the gluten for a few weeks before the test. However, I had not yet been gluten free for six months either but I had been so ill that we are talking nothing left in the system. I go back to eating wheat.
2009 Not feeling well (brain fog, depression, anxiety, UC symptoms, fatigue, groggy etc) I go gluten free - I 'think' I feel better but not completely.
mid 210 Wanting more wellbeing I go on the SCD (grain free, lactose free etc). Again, some benefits, but not miraculous.
mid 2011 - somehow after almost three years gluten free I go back to wheat and other grains.

Now eight months on, I'm feeling quite unwell again (general lack of energy, wellbeing etc) and have had a big bout of depression/brain fog/cognitive slow-down. So, my doctor has tested blood for celiac again. My TTg IGA AB is over 300. Apparently it's supposed to be under 15. But I've read this can be elevated because of Ulcerative Colitis and although I'm not flaring, I do have this disease and maybe I just constantly have elevated antibodies.

I'm not sure what to do...

* Shall I just do gluten free 'in case' I'm celiac (I think there may be gains for my asthma too and I could assume I'm just intolerant rather than celiac)
* Or is it important to really 'know' if I'm celiac or not - should I ask for another gastroscopy.
* Or can I assume the TTg IGA is down to colitis and not worry about gluten - the other antibodies tested came back normal. I've never lost weight or those kind of symptoms.

Really confused, it seems like this is a very hard disease to categorically diagnose.

Any advise or ideas about how to proceed, discover if I am celiac, hugely welcome.

[nora_n]

I think very high ttg numbers are supposed to be celiac, but others can have lowish ttg numbers for other reasons.

Can you get the more specific deamidated gliadin tests, both the IgA and IgG versions? Those are more specific for celiac than the ttg test as far as I know

Most celiacs diagnosed nowadays are over-weight, only 5% are under-weight

[Skylark]

I agree with Nora. While you're still eating gluten you need deamidated gliadin IgG and IgA and anti-endomysial IgA. All are specific for celiac.

That said, with your symptoms improving off gluten and gradually returning on it, I bet celiac is your issue.

[josie656]

Thanks, they did test other things (it was a celiac screen) but the TTg was the only one that was elevated (a lot). Others were normal but I need to find out exactly what they were. If they are what you are suggesting and they are normal levels but with a high TTg would that then mean I wasn't celiac? Many thanks,

[Skylark]

Not really. False negatives are fairly common on celiac blood tests. A positive result on the specific tests means you're celiac but a negative does not rule it out. As you mentioned, this is a very hard disease to categorically diagnose. Compounding the problem is doctors' unwillingness to give patients a firm diagnosis without irrefutable evidence. There are some celiacs where everything is positive and the diagnosis is easy, but it seems more common that test results are not a clear-cut as one would like.

It is hard to imagine you're not celiac with super-high TTG and a good response to the diet. It's good to know if you're celiac becasue in the future there may be vaccines or helpful enzymes. It's also important if you are having any problems accepting the lifelong gluten-free diet or you might second-guess yourself in the future. If so, you probably need an endoscopy with quite a few biopsies (experts do 7-10) and to fill in any gaps in the blood testing.

[josie656]

Thanks Skylark. It just feels confusing really because I have been through the gastroscopy part and they were so sure I was fine. Presumably that also meant no damage - which would be odd after eating wheat all my life if I was celiac wouldn't it. I think I will try and track down the report. I was in hospital in January 07 had been eating gluten all life up to then. Once I could eat again I was put on gluten free and may have been on it max two months before the gastroscopy and ate wheat again for a couple of weeks before it. Does that sound, because I wasn't gluten free for six months, that even though I only ate wheat again for two weeks, it would probably still be the right conditions for gastroscopy? I'm not sure if the fact that my gut would have been completely cleaned out by the colitis and bleeding would change the villi situation, I'd kind of imagine not.
As for whether I was better on gluten free I really never really knew. I think anxiety/depression improved, moods evened. I'd say on the whole. Not sure what other gains I had. Not enough because I chose to go grain free (and low starch/sugar/lactose). My immune system definitely benefitted from that because I was able to come off immune suppressants and my body got rid of a plague of verukas all on its own.
I do wish I hadn't come off the diet (I got into a situation where I was unable to eat grain free and then all these cravings took over and my colitis actually stayed fine). However, it's the head issues I'd really like to get on top of. But I don't know if they can be celiac.
Also, I have a vague recollection of being blood tested for celiac again after not being convinced by the gastroscopy and being negative. Thanks for listening!

[josie656]

wow I have just been reading some threads about brain fog, concentration, memory etc. It's so me and the main thing I want to address! So all in all I was off gluten for almost three years, although the first 1.5 may not have been 100 per cent (cross contamination etc). Is it possible celiac can be my problem when I went five months back on wheat before my wierd episode started, which has been with me for months now. I call it depression for the want of another word really. But it's more about the cognition issues. I did the odd patch during those three years, but I don't think I had a long spell like this. I certainly seem to find a lot of familiar symptoms on this site. It's good to be among friends

[Skylark]

Yes, as you've read a LOT of us have brain fog, concentration problems, etc. You are among friends.

Six months gluten-free is enough to heal damage in a lot of people. A couple weeks of wheat may not be enough to cause villous atrophy to the point where they see it. Relapse studies show that most people typically take a couple months eating quite a bit of bread. Also you need to be sure they even took celiac biopsies. Celiac can't be seen with a scope.

The slow buildup of symptoms is definitely more typical of celiac than gluten intolerance. Some people with celiac don't notice CC or a single meal of gluten but they get sicker and sicker on a normal diet. I'm that way with rye and barley. I can eat rye crackers with no real short-term issues but if I start eating rye regularly the symptoms start to build up.

Edited to add: Er... speaking of brain fog I didn't think to tell you the most obvious thing. If your TTG drops off gluten, you're celiac.

Edited by Skylark, 19 May 2012 - 08:00 AM.

[josie656]

Hi Skylark,
Thanks heaps - yes I think that's my next step. Go gluten free for six months and then retest the ttg.
NB: I wasn't six months off gluten when they did the gastroscopy. Only about two months off, two weeks on. Wish they'd do these things properly, it's not a nice procedure and it costs money so why don't they get the controls right.

I'm in NZ by the way.

Got hold of my latest blood test today so here's the other things they tested for:
COELIAC ANTIBODIES
(Ref. Range)
Tissue Transglutam. IgA 300 U/mL * (< 15)
Deam. Gliadin Peptide IgG 4 Units (< 20)
EMA IgA Negative
Total IgA 3.3 g/L (0.8 - 4.0)
Coeliac disease cannot be excluded. Tissue diagnosis represents the
"gold standard" for diagnosis of celiac disease.

[josie656]

I also seem to have tested positive (80) for Smooth Muscle Antibodies. Which I'm reading may be indicative of celiac (and worryingly of liver disease). Will have to ask my doc more about this too. I've read somewhere that undiagnosed Celaic may cause autoimmune disease and since UC is thought to be such, and with this SMA result, I'm kind of concerned my immune is gone cuckoo!

Anyway definitely back to the Gluten free. Can't quite believe I came off wagon so dramatically (8 months) when I'd done three years.

[nora_n]

.......
Tissue Transglutam. IgA 300 U/mL * (< 15)
Deam. Gliadin Peptide IgG 4 Units (< 20)
EMA IgA Negative
Total IgA 3.3 g/L (0.8 - 4.0)
Coeliac disease cannot be excluded. Tissue diagnosis represents the
"gold standard" for diagnosis of celiac disease.

I see they did the other celiac tests, and they were negative.
But the high ttg IgA test is really high so it does look like celiac

[GFinDC]

Hi Josie,

The endoscopy is a "gold standard" when it is positive, but when it is negative it doesn't mean a hill of beans. It's like the other celiac tests, the positives are darn near always right, the negatives, um, not so much.

Celiac is an autoimmune disease. There is a slightly higher chance of people with celiac getting other autoimmune diseases also. There are lists of them if you search for "celiac related condition" or "celiac associated condition". It is possible to have more than one autoimmune disease. My younger brother had both celiac and Crohn's. If you check the signatures of other posters, you will see some with rheumatoid arthritis, Sjogrens. lupus, diabetes etc. Some of us are just plain grouchy too but we don't list that in our signatures usually. Oops, telling on myself! I hope Oscar doesn't see this. LOL

Here are some threads that might help:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

[1desperateladysaved]

There is what is called an elimination diet. You have done it. I think you pretty much proved you have a gluten problem.

I had false negative IGG tests.
I had a 4/4 genes for gluten intolerant result.
I cut eating gluten and my body felt great for 5 days; then I started getting signals (dizziness, and difficulty concentrating) very frequently. I just noticed yesterday that I am better when I leave my kitchen. Oh, by the way, my family can't eat non-gluten even though most likely have the genes!

[josie656]

Thanks everyone for your comments and useful links.

GFinDC - I'm feeling really grumpy tonight so I must be celiac :lol

Well, I'm fairly convinced I need to go back to gluten free and perhaps even grain free but I'm still confused about the actual specifics and it is tempting when you have people saying there's no problem to just eat normally. I long to feel better though. And I think I did before, but not completely, it wasn't night and day or anything.

I asked my gastro about the 07 gastroscopy and below are his interesting words. Meanwhile the doc who ordered this latest screen hasn't rung me about the high ttg to tell me to go off gluten or anything.

I went to a talk once by Dr Gluten (!), google and you will find him, he told me gluten can't be good for anyone with celiac.

I guess I got lazy. The SCD made it so super hard and still wasn't feeling brilliant (but possibly there were other foods still consuming that didn't agree) that when I came off that wagon I came off the gluten free too.

Here's my Gastro's take on the whole thing (doesn't tell me how many biopsies were taken unfortunately, since they had trouble, I doubt it was seven):

------
2) The endoscopy showed multiple small ulcers at the duodenal bulb (first part) making it difficult for the endoscopist to gain entry into the second part, but they did and the biopsies were taken. H. pylori was negative at the time, so this was likely associated with the stress of the terrible acute E-coli illness.

3) TTG is not 100% specific for coeliac disease or anything else. TTG titre does not reflect activity of UC either. So a titre of 300 does not mean you are likely to flare up again, or are flaring up now. Coeliac disease and IBD are completely separate conditions, both of which are not uncommon so every now and again we see people who have both.



Current results … in essence nothing that suggests coeliac disease.

Yes the TTG is positive, but the dGP and EMA are both negative (and the EMA has been negative twice before as well).

Add this to the duodenal biopsies that were normal, then you don’t have coeliac disease.

But you know that IBS sufferers often have wheat/gluten intolerance, so if it makes you feel better do it (the gluten-free thing); if not don’t.

[Skylark]

Hi Skylark,
Thanks heaps - yes I think that's my next step. Go gluten free for six months and then retest the ttg.
NB: I wasn't six months off gluten when they did the gastroscopy. Only about two months off, two weeks on. Wish they'd do these things properly, it's not a nice procedure and it costs money so why don't they get the controls right.

I'm in NZ by the way.

Got hold of my latest blood test today so here's the other things they tested for:
COELIAC ANTIBODIES
(Ref. Range)
Tissue Transglutam. IgA 300 U/mL * (< 15)
Deam. Gliadin Peptide IgG 4 Units (< 20)
EMA IgA Negative
Total IgA 3.3 g/L (0.8 - 4.0)
Coeliac disease cannot be excluded. Tissue diagnosis represents the
"gold standard" for diagnosis of celiac disease.

That's very thorough testing. Good!

About all that's left is to go strict and get your TTG done in six months or a year. If it drops you're probably celiac; if it stays elevated it may be autoimmunity from the UC. Either way, I hope you get back to feeling better.