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Member Since 19 Nov 2012
Offline Last Active Apr 05 2013 12:16 PM

Posts I've Made

In Topic: Ttg Down To Normal After Only 4 Months Gluten Free?

02 April 2013 - 10:49 AM

It hard to say how long I had it before diagnosis. About 6 months before I started having itchy eczema in my scalp that began to spread all over my body, my tongue was very sore and irritated, and my iron dropped very low. I also started to have hair fall out.  I was reading an article about the low iron and it mentioned celiac disease as a possible cause, and I remembered my dad had been diagnosed shortly before he died, so I went and got the test. I've had low iron and tongue problems for years (doctor said it was geographic tongue) just during pregnancy though.  Those symptoms are both more frequent during pregnancy, and they went away when I wasn't pregnant.  So it's possible that I had problems before 6 months ago, but 6 months ago is when the symptoms got really bad.  I've been careful on the diet, no cheating, but I still go out to eat and I have thought at times there was some cross contamination symptoms (my eczema flared up)  My symptoms have improved, but the eczema isn't gone on my scalp, and I'm not sure if I'm still losing hair (but some has grown back too). Things are much better, but I hoped all my symptoms would be gone when my (TtG) IGA was normal.  (My iron is up too, BTW, though it still on the low normal side.)  I had my TSH checked to make sure it wasn't a Thyroid problem but that came back normal too.

In Topic: Can A Person Have A Positive Ttg Blood Test For No Reason?

14 March 2013 - 07:23 AM

Thanks for your replys.  His EMA was negative, and his Iron level was fine, but I don't think they checked his Vitamin D. For now he's decided to go on a gluten free diet to see if his TTG go down to normal levels.  He wants to avoid follow up endoscopies (GI said he would need to do them periodically to check for damage, probably every few years) and symptoms that his family members have, including any increased risk for other autoimmune disorders. If his TTG goes down we were thinking that would indicate celiac really was the problem, even without fining anything on the endoscopy.  I haven't ever heard  about an infection causing high TTGs as toworry mentions.  If thats true I'd like to read some more information on that. I had understood that the high specificity of the TTG would make celiac very likely for him.I know that the specificity depends somewhat on the level too - his TTG was 51 with less than 20 being negative, which our GI said was a moderately high positive on the test. If his level goes down to normal while he is off gluten, and he then does a gluten trial and it rises again, would that indicate the problem was indeed celiac disease?  I guess my question is, if it appears that his TTG levels do rise and fall in reaction to a gluten free diet, would it really be fine to stay on gluten even if they found nothing on the endoscopy?  It seems to me just the high TTG is a risk, but maybe I'm not understanding what the TTG really represents. 

In Topic: Son With Conflicting Test Results, Unsure What To Do Next

17 January 2013 - 12:19 PM

I can see how doing the endoscopy would be good to know a little more and provide a baseline, and has a small chance of being useful if his numbers don't go down on a gluten free diet, but the expense, discomfort, and uncertainty about the meaning of the result makes the whole procedure seems more trouble than its worth right now. Plus I just read a study that talked about the increased risk of other autoimmune disorders the longer the delay is between start of symptoms and start of a gluten free diet, and a negative biopsy result would provide more disincentive to begin the diet. He really needs to do the diet, having a gluten free diet now is much better than risking getting diabetes, MS, or Lupus down the road. If at some point his attitude changes, and we have a hard time getting him to stay on the diet, we can do a gluten challenge and he could get it then still if we felt like that would help him with compliance. That's the biggest reason I see to do it, better compliance. Hopefully he will find he feels better on the diet, and won't need extra incentive.

In Topic: Son With Conflicting Test Results, Unsure What To Do Next

16 January 2013 - 11:32 AM

So he had his Pediatric Gastroentronologist appt yesterday. The doctors said he felt the odds were 50/50 that they would find damage if they did do the endoscopy. He recommended we do one, becuase it would help us to be surer that a gluten free diet was really necessary. He is willing to dx him offically - write letters, or whatever is necessary, to get him any accomidations needed, without the endoscopy, but he says that since a gluten free diet is difficult, he feels like having more evidence could be important to him later, and he'll be more likely to cheat or return to a regular diet without it, and that if there is no damage found there is no reason for him to be on such a restrictive diet. He said people could have a high score like my Son's indefinetly, and don't necessarily ever develop "full blown" Celiac disease.

I'm torn - I don't want to make life more difficult for my son, so of course I wish he didn't need to go gluten free. Even though he will be gluten free either way at home, school will be a challange, and he's going into Jr. High next year. So on one level it seems like an endoscopy, if it turned out negative, would be a good thing. We would continue to monitor him and watch for damage, and he wouldn't have to live on such a restrictive diet right now. So I see the logic in what the doctor is saying. On the other hand, even if we go ahead and do the endoscopy and no damage was found, as I described before, I would worry. As I said, they could miss something. Even if there was really no damage, I'm not convinced that small intestine damage is the best thing to rely on to know if Celiac disease isn't really hurting him - especially now, when he's going through puberty, and alot of critical changes are happening. And I'm not convinced that the endoscopy would reduce the chance that he would cheat or revert back to a gluten diet at some point anyway. It would be more evidence, but I think compliance probably relates more to symptoms than anyting else. With or without the endoscopy, I suspect he may cheat. And if he cheats and doesn't have symptom, he's more likely to continue. Symptoms might convince him to stop, but I'm not sure that having an endoscopy is really that convincing.

From what I understand, if he really didn't feel any better on the diet after a year or so, and wanted to eat gluten again, he could then go on to do a gluten challenge for 6 months and test again, doing an endoscopy if his blood test was again positive. I'm leaning that way. It's seems like the most sensible course. And my son is on board with it. He's a great kid! I just wondered if anyone saw it more like the doctor does, that damage to the small intestine was what is really important and convincing, and no damage there would mean a gluten free diet was unnecessary, and it is better to do the endoscopy sooner rather than trying the gluten free diet first. The doctor said it was our decision, but he gave me the impression that having my son go gluten free now without the endoscopy would be over reacting and I would regret it. Does he have a point?

In Topic: Son With Weak Positive Score And High Immunoglobulin, What Does That Mean?

20 December 2012 - 09:04 PM

Nope, we didn't have the DGP. Maybe the pediatric gastroentronologist will order that next? Really, I think he'll want to do an endoscopy now with him. With my other son he said he was fine skipping it since his IGA was over 100, that we could dx based on the blood test alone if I preferred that. But wiith these results for my older son I think the only way to be sure is the endoscopy. The thing is, even if the endoscopy is negative, with my dad, me, and my younger son being diagnosed now, I am not sure I'll really feel comfortable with my older son staying on gluten if the biopsy is negative. Seems like even if they don't find damage now, there will be soon.I'm not crazy about waiting to see damage, even if he's essentially asymptomatic right now(the only thing that could be a syptom is he has mild eczema and skin rashes).

Can anyone explain to me why the two IGA tests would be so different? I understand that the scales are different, but still his first was barely a weak positive, then a test just a few weeks later shows a score that is a moderatley high positive. I though the test was more standardized than that. It made me question my other kids who scored negative on the first IGA test, so I ended up doing the panel over for them as well. I think our pediatrician thinks I've gone a bit crazy!

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