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Si & Ash's Mom

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About Si & Ash's Mom

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  1. Thanks stephm. My son also has extremely dry skin (it flares into full blown eczema at times). He licks his lips when he's nervous and gets a huge angry red rash around his mouth almost instantly - I can tell if he's stressed by the rash around his mouth! Never thought it could be related to fat malabsorption but that makes sense. Interesting that your digestive symptoms crept in after eliminating gluten... certainly lines up with what our doc told us, doesn't it? I'm thinking we'll maybe try a gluten free diet after we wean him off of the laxative and see what happens. We unfortunately don't have the option of seeing another doctor so we'll be left trying to figure it out on our own. I'm glad you found a doctor that is taking you seriously - I hope the GI you see takes you seriously as well. Best of luck!
  2. Thanks Jkta. Yes, it always seems like a struggle to get him to drink water! That is definitely something we need to work on - I'm sure it would help. All the best with your daughter - I hope the endoscopy goes well.
  3. Thanks for your input ravenwoodglass. I thought the same thing but she caused me to question that. In all fairness, she did say that an elimination diet may be a good idea in the future - she just felt that he could be missing out on some vital nutrients while growing if we did an elimination diet now. Also, she suggested that we waited until he was off of the PEG laxative as we wouldn't really know if it was the diet or the PEG that was helping at this point. I wouldn't wish celiac disease on anyone but it would almost be easier to have a clear-cut diagnosis. He may do much better gluten-free but when you have the medical establishment (and family) against an elimination diet then it becomes pretty much impossible. I don't think our doctor would ever consider referring us to another specialist for a second opinion - in his mind it is not at all diet related so it would be a waste of time and resources. We're in Canada so I can't just get an appointment for him myself. Not sure what to do now but I appreciate your help
  4. Hello all. My 7 y/o son has been struggling with chronic constipation since he started solid foods. He has been on PEG (miralax, restoralax) for a couple years and we have had to continually up the dosage to keep him somewhat regular. His paediatrician tested him for TTG IgA (he was negative) as well as thyroid tests (also negative). We were referred to a paediatric gastroenterologist to ensure there was nothing concerning causing the constipation. I myself have been gluten free for approx. 9 months and feel so much better (celiac blood tests were all negative for me too). I asked the gastro if there is a possibility that non-celiac gluten intolerance could be the cause of my little guy's problems. She said it definitely could be but she did not recommend a gluten-free trial. She said elimination diets can actually cause a person to become more allergic/sensitive to the food they are eliminating. I had never heard of this before. She said since the 'celiac' intestinal damage isn't occurring, the elimination carries more risk than benefit. Does anyone know of research that states this is true? Thanks for your input
  5. 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!
  6. 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!
  7. 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. http://requestatest.com. 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
  8. 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!
  9. 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
  10. That's good to know - we will give it some time when we lower his iodine intake. Thanks so much for all your help
  11. 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...
  12. 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...
  13. 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
  14. 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.
  15. That is super helpful - thanks so much!