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I Have Colitis So How Can I Know High Ttg Iga Is Celiac?


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21 replies to this topic

#16 josie656

 
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Posted 21 May 2012 - 03:33 AM

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.


Doh! dyslexic typing! I meant to type that he said gluten can't be good for anyone with colitis! :lol:
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#17 beachbirdie

 
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Posted 21 May 2012 - 12:10 PM

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,



Here's another perspective, and I hope other more scientifically literate will jump in and tell me if I'm off the wall...

From all the research/reading I have been doing over the last few months, celiac seems to present differently in different people. There also appears to be a spectrum on which people can fall, depending on circumstances/genetics/biology/exposure.

So...with an elevated TtG, you are assured that you have an autoimmune condition. Tissue transglutaminase is an enzyme present in several types of tissue in your body. Now your body is attacking it's own enzyme. Without a positive biopsy you do not seem to be under attack in the small intestine, but with ulcerative colitis you have a condition in which you ARE suffering tissue damage.

Celiac does not always present with small intestine damage. I have found (reading studies out on the 'net) that a significant number of people with Hashimoto's or other autoimmune conditions have fewer symptoms, often don't have digestive symptoms, and do not always show villous damage.

I was one who tested positive for the TtG IgG, could mean celiac or could mean something else. I also had rashes that look like dermatitis herpetiformis, but not as widespread as most celiacs have. I have Hashimoto's Thyroiditis. That was enough for me to have my doc say "you need to be gluten free".

I am thinking that is it possible to catch the immune response in early stages, and if that is ignored, a person will go on incurring increasing damage until they ARE full-blown celiac with atrophied villi. The modern medical world does not know what to do with disease that is just beginning. As in other conditions (Addison's for example) they just don't know what to do (or don't think the NEED to do anything) till a patient gets to the crisis stage.

Better not to worry whether all the tests come in positive, or the biopsy comes in positive, take that TtG as a warning sign that gluten is BAD for some part of you, and go gluten free. Imagine speeding down a country road and blowing through a "bridge out" sign! If you go off the cliff, no one else is responsible!

I hope that makes sense...I'm rushing out the door to my daughter's 4D ultrasound and working with half my brain!
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#18 josie656

 
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Posted 21 May 2012 - 12:22 PM

Yep. Going gluten free. The more I read on the forum the more I identify with. All kinds of neuro issues inc long term memory that I can never get any diagnosis on other than depression (and I don't take anti d's) Also, I'm not convinced of the validity of the biopsy I had, it should have been done much much later when I was over the major colitis attack.

As I go to work with my gluten-free bread though, i'm thinking cross contamination in their toaster - must be true in every cafe too.

Thanks again everyone

I posted this in the wrong place so posting again, my Gastro's take on my celiac unlikelihood: - Think I'll just be one of those that diagnoses myself.

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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):

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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 Ö 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 donít have coeliac disease.
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#19 GFinDC

 
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Posted 21 May 2012 - 01:47 PM

One of the members here, Ravenwood glass, was tested several times of a period of years and found to not have celiac disease. Except she did have it and got much better after going gluten-free. The positive tests are ok, the negative tests don't mean a whole lot. Seems like a screwy situation but it is what it is.

Some people with Crohn's follow the gluten-free diet also, and some report improvements and others don't. I think it is worth a try for 6 months or so to see if it helps, regardless of what the tests and doctors say.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#20 beachbirdie

 
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Posted 21 May 2012 - 05:24 PM

Yep. Going gluten free.

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.


It might even be worth trying the GAPS or SCD (Specific Carbohydrate) diets. They are a little more challenging to undertake as they are grain-free, sugar-free, and dairy-limited. But many people with Crohn's, ulcerative colitis, and other intestinal diseases/infections have seen great improvements.

Ugh. I just went back and re-read your initial post, I see you already tried that!

Well, as Skylark suggested, get re-tested in 6 months. See how your TtG levels out, if it falls by a lot, gluten is a likely culprit.

Are you with the same doctor you were with in 2007? If you can contact the doctor who did your initial positive tests, you SHOULD still be able to get copies of those results. It would be instructive to find out which test was positive back then.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#21 josie656

 
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Posted 22 May 2012 - 02:04 AM

Thanks Beachbirdie.
Yes, I did have some gains on the SCD and did it for over a year. I stopped eight months ago and now I can't remember what I used to eat! It's good but hard. I think energy was still a problem.
I am annoyed at myself for stopping though. Falling off the wagon was unavoidable but I should have got right back to it instead of giving in to craving city. Now I'm going to do my own strange meld of gluten free and SCD (reduce grains, lactose and sugar).
I'm not with that doctor any more but that's a good idea if I could. My gastro should have it on his records but he's quite prickly to get information out of. I kind of daren't ask him any more after his proclamation I am not celiac.
I hope you are feeling better now you are gluten free?
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#22 josie656

 
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Posted 10 June 2012 - 04:06 AM

I am starting to have more good days neurologically (brighter and more with it, more positive), starting a food diary to try and highlight other things (suspecting potato, tomato, sugar). It's a big deal to start to feel better. A big relief. I feel quite sad though for the months I have missed this year 'not being me' and over the years too.

I'm supposed to be going to UK (via Borneo) in July and find myself not keen. It is much easier to be in control of my diet at home. Eating out seems to be unreliable and when away, eating out happens a lot. I'm even thinking of not going. How do people feel about travel?

I've read on this forum that Ttg is specific to Coeliac but then my doctor says it's not. Confusing. I also read, interestingly that SMA (smooth muscle antibodies) which I also tested positive for, can mask one of the specific coeliac antibodies.

Good health to all... :D :D
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