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Si & Ash's Mom

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  1. Hi all - I kind of threw this on the end of a previous thread I started but thought I would start a new one for simplicity sake... I have been negative on all celiac blood tests. The tTg, and AGA tests were absolutely negative - like nothing at all registered there. DGP IGG was 2. My DGP IGA was 6 (0-19 is negative). I'm curious - is it considered normal to have some DGP antibodies? Are there healthy people out there with absolutely no issue with gluten that have numbers like that? It seems that it would be concerning to have any numbers, but I totally concede that that could just be me grasping at straws . At any rate, I'm curious if there's an actual answer. Thanks!
  2. Just posting a recap of new happenings this last year - I would love some more advice. I personally have had more blood work done (while travelling in the USA). All blood work is negative. tTg IgA - negative (completely - nothing even registered) gliadin IgA - negative (pretty much completely) gliadin IgA - negative (completely) DGP IgA - negative (6 and 0-19 is negative) DGP IgG - negative (2 and 0-19 is negative) I have stubborn iron deficiency anemia that is slowly slowly increasing as I take supplements every day. I have a lactose intolerance (I believe my kids do too) but seem fine with small amounts of dairy. I struggle with depression and anxiety and have raynaud's (just in my feet though). Doctor ran autoimmune blood tests because of the raynaud's but they all came back negative. My menstrual cycles are crazy heavy (doc believes this is the cause of anemia and that makes sense). I have been on birth control for quite a while now to control this - practically no bleeding for a long time but the past 2 months my flow has been crazy heavy again, even on the BC (sorry for the overshare). For the few months I was gluten-free my cycle almost completely normalized... Like I said previously, I would be fine being gluten free just for myself but my kids have issues and I am having a hard time getting support to change their diets. My 2 oldest had the tTg IgA ran - both negative. My oldest has a rash on his elbows that *could* be DH but I don't know for sure if it is. His allergist said she thought is was psoriasis. He also has strong environmental allergies, cold urticaria, chronic loose stools, and mood issues. My other son has chronic constipation that leads to encopresis as soon as we stop laxatives. He has eczema, complains of growing pains frequently, and says his stomach hurts a lot (allergist wanted us to try an elimination/addition diet with gluten and dairy as it's not a IgE allergy or celiac according to blood). He frequently seems tired but has diagnosed airway/sleep issues, so that is probably why. He has crumbling baby teeth but the dentist didn't seem concerned since he'll lose those teeth anyway... So my question is this... Is it worth pushing for an endoscopy for any of us? My doc doesn't want to send me for one as all bloodwork was negative (I get that - he doesn't want to send someone for a procedure unnecessarily). I just have this nagging feeling that it is actually celiac. I'm not sure why I feel that way - it could just be anxiety... I know some docs send patients for endoscopy even if bloodwork is negative but would that apply to me? I would love some opinions. Thanks!
  3. Hi winjer. I am far from an expert but can maybe help a little... Do you have the results of the biopsy? Could you get them? Do you know how many samples were taken and from where? If the gastro is not really educated on celiac they may have missed the damage or not taken enough samples to get an accurate picture of your intestinal health. I would think that 4 positive Ttg tests is a pretty strong indicator that you have celiac but I can understand wanting confirmation on that. I am in Alberta and here they run the EMA test if you're tTg is positive. Could you come here for bloodwork? Are you in the Vancouver area? If you're close to the U.S. border you could drive into the US and order your own celiac blood tests there. That is what I plan on doing in a couple of weeks. You would have to pay for them out of pocket but it is an option. Oh, you have to be eating gluten for the results of any blood test to be accurate so don't go gluten-free until you are satisfied with your diagnosis and testing is complete. I totally understand how frustrating our health care system is. There are so many uneducated doctors out there that it makes it really hard to get an appropriate diagnosis. Good luck to you
  4. Just an update - we have had my son on a low iodine diet and his rash seems to be clearing up. It's difficult to know what's what as his rash seems to flare up and then improve on its own for no apparent reason. It never seems to fully go away though (except when he was on prednisone). We'll get him back on iodine and see what happens!
  5. Thanks - it's nice to know I'm not way off track! Lol! We have never put him on a gluten-free diet so I'll probably try to get a biopsy before we eliminate it. A 12 week challenge would suck! I appreciate your input
  6. That's good to know - we will give it some time when we lower his iodine intake. Thanks so much for all your help
  7. Thanks everyone. We will try to lower his iodine intake to see if it helps. So yesterday evening his elbows started looking inflamed/infected (I didn't get a picture as he's already really self-conscious about it). They are now like this... He still claims it's not that itchy... I just don't know what to think. I'm afraid any derm will brush us off (though there's no harm in trying) and I'm scared that, if we do go through with a biopsy, he'll be super upset about it (particularly if it comes back negative). My husband thinks I'm way over-reacting and putting him through unnecessary stress but I would hate to leave him undiagnosed if gluten is a problem... What to do...
  8. Hmm... I haven't really noticed that it gets worse with iodine but I'm not really familiar with high-iodine foods. Would that be foods with lots of iodized salt? He does crave salty foods...
  9. Here's another pic - would this be considered a flare-up? He really doesn't seem to find it that itchy... I don't think it has ever kept him up at night or anything... Thank you all for your replies and input And sorry for the giant pictures! I don't know how to make them smaller... And bluewhitesky - I hope you are figuring things out with your son. I'd love to hear more about the results and what happens at your follow-up appointment. Thanks for your help
  10. Very interesting - thanks so much Nolev. Yeah, prednisone is terrible - I really hope he never has to be on it again Good to know that psoriasis reacts the same... food for thought.
  11. That is super helpful - thanks so much!
  12. Oh, I have one more question - are the biopsies quite painful and invasive? I'm sure it's nothing like an endoscopy but I'm not really sure what the procedure entails...
  13. That's great advice - I have found that the docs we've seen so far have been pretty dismissive but I'll try to get a referral to a derm. Our allergist has been the most willing to work with us so I'll see if she'll refer us. Wish us luck! And all the best with your DH - I can't imagine how difficult it would be to live with.
  14. Well, he kind of is in a way - he has an allergic condition called cold urticaria (basically he's allergic to the cold). If he gets cold/wet he gets hives and itches. He doesn't really complain about being itchy even though he gets hives a lot... From what I have learned here though DH is so unbearably itchy. I can't imagine that he wouldn't complain if he was experiencing what I know a lot of you experience... Very confusing! I'll maybe just keep an eye on him and push for testing if it starts to noticeably bother him. Thanks so much for your help squirmingitch. I really appreciate it.
  15. Thanks so much for responding squirmingitch. That's what I was thinking. If DH does progress and itch more over time, he's had it long enough that it would probably be bothering him more by now. It just looks so much like DH (and he's had it so long) that I thought I'd ask. One more question - he was on prednisone a while back due to asthma and the rash almost completely cleared. It then came back worse when he was done with the prednisone. Would most skin rashes/conditions react this way to steroids? Just trying to narrow it down if I can and there's so much knowledge here on this forum Thanks