SiandAshs Mom
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On 11/22/2016 at 0:52 AM, Jkta said:
I found that what she really needed was to drink more water and that really helped her constipation.
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.
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22 minutes ago, ravenwoodglass said:
When that happens we call it being 'glutened'. In most cases people don't react to something they haven't eaten in a while for no reason,IMHO.
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
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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
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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!
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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!
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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. Open Original Shared Link. 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
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Open Original Shared Link
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!
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That looks exactly like my son's DH, especially those little craters where he has scratched off the tops.
I know exactly the frustation of trying to figure out what's going on. What we did, was take our son off gluten to see if the tummy aches would get better. Tummy aches stopped immediately and the rash started healing. That was great information and it gave me something to go with when I went to the doctor. The trouble with that was we had to get him back on gluten for a full 12 weeks before we could do any testing. So most people would tell you for that reason, to not go off gluten at all until you a diagnosis.
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
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So it got all red & raised around the lesions right? I can see marks where he scratched it. DH gets really itchy when it gets that raised red puffy look. He's scratched those tops off so now you see it's open in those places. This is what my dh does now that I'm no longer getting the blisters.
Try the low iodine & if it responds then you can further test by loading him up with iodine rich foods & see if it flares again. Now you have to realize that each person is different & reacts differently. For example, I reacted to iodine intake very quickly -- like a day at the most 2. When I went low iodine things would calm down very quickly also --- like 3 days. My husband however, took around 3 days to begin reacting but it would take him 10 days for it to calm upon removal of high iodine. AND I think it depends on what stage or severity the dh is in.
That's good to know - we will give it some time when we lower his iodine intake. Thanks so much for all your help
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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...
Open Original Shared Link
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...
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That looks like a lot of new blisters compared to the last picture you posted.
Have you noticed any worsening of the rash after your son eats foods containing a lot of iodine? Iodine is connected to DH. For my son, it is a huge trigger.
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...
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Open Original Shared Link
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
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re: prednisone, I have DH and psoriasis - after coming off prednisone, everything came back so much stronger...and this got worse every time (took prednisone 4 times - will never take it again!). The reound effect was awful.
Re: this picture: I agree DH is BRUTALLY itchy. Psoriasis and eczema are both itchy but more of a bothersome itch, rather than a want to scrathc your skin off, can't do anything else itch. So I think it is more likely eczema/psoriasis or something like that... good luck
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. -
No, not really painful or invasive. Here is a link & they show you a picture of how it's done. Scroll down to the drawings:
Open Original Shared Link
And print this out & take it with you to the derm & MAKE them read it. If they do the biopsy wrong & most do then we have zilch. So many want to take it directly ON the lesion so be a helicopter mom & make sure things are done correctly.
Open Original Shared Link
Also a note..... The pattern the pathologist is looking for is easily destroyed (that's why they have to take it ADJACENT to a fresh lesion) by scratching so it might be a good idea to put several layers thick of gauze bandage or some really big band aids over the area so your son doesn't scratch it & destroy the patterning. Maybe sleep with socks on his hands for a couple nights before the appt.
OH! And a dx of dh IS a dx of celiac -- no more test needed.
That is super helpful - thanks so much!
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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...
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Oh you are most welcome!!!
I've heard of/read about cold urticaria & from what I've read or been told it is a pretty darned painful thing so maybe he is a total trooper & has an amazing threshold for pain.
Just some food for thought & I'm not even sure what to make of what's going on with him.....
When I began getting blisters (which is how my dh started out presenting) the places would itch a good bit for 12 to 24 hours before a blister ever appeared (this is typical of dh) but when the blisters did appear they itched surely but the moment I scratched to open skin then the itching went WAY down -- it would only itch off & on & the itch was more along the lines of what you experience with a mosquito bite. That went on for probably (I'm guessing at time frame) a year or more before things escalated. What I'm saying is that early on dh can be "not so insanely" itchy.
The other thing is how about getting him a dh biopsy? You know 60% of us with dh test negative on the celiac blood panel so the best way to get a dx of dh is through a dh biopsy. If he's eating a gluten diet & hasn't been on oral steroids for 2 months then you could take him for a biopsy. Frankly I wouldn't bother with a ped derm -- can't regular derms treat kids? At any rate tell the derm you want a biopsy to RULE OUT celiac. Make sure its done on clear skin adjacent to an active fresh lesion.
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.
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I don't know about most skin rashes --- don't know if they would react that way or not. I've never heard of things like psoriasis or eczema reacting like that to withdrawal of steroids but I KNOW dh does that. This is odd. Is he super stoic???
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.
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It is presenting bilaterally but dh itches like mad!!!! If it's been there for over a year now & it doesn't itch enough to drive him insane then I'd say it's something else. There are other skin rashes associated with celiac disease but as far as itching goes dh makes poison ivy feel like a walk in the park.
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
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Hi all. My 8 year old son has had this rash on his elbows for well over a year now. He says it doesn't really itch though I see him scratching/picking at it a lot. He has some digestive/immune/mood issues we're trying to figure out and I'm wondering if I'm totally barking up the wrong tree thinking it's gluten. He had attg iga test and it was negative. His allergist/immunologist said the rash is probably psoriasis but it doesn't look like it to me... thanks for your thoughts
Open Original Shared Link
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Hi,
They probably won't find Hashimoto's except by testing for the TPO antibodies. There may be a genetic link for Hashimoto's. A number of people on the forum have reported having Hashimoto's as well as celiac disease. The linked wiki article has more info. I thought of it because you mentioned throat irritation after eating gluten. The TPO antibodies test isn't a standard test they give thyroid patients from my understanding. It's something that has to be requested. Hashimoto's is more common in women than men.
Open Original Shared Link
Here's another thread discussing Hashimoto's and some other stuff. Has some discussion of thyroid testing in it.
Thank you for the info! I will give it a good thorough read when my kids are in bed tonight
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Your symptoms could just be hormonal too. If not eating gluten makes you feel better, then don't eat it. You don't need a diagnosis to change your diet. If your TSH is in the normal range, it's normal. What was your reading and what was the range given by the lab? Yes, the emotional issues can be associated with Celiac but it's really uncommon not to have some digestive issues if you have other "symptoms". As for your child's teeth..what does your dentist say?
Yes it could definitely be hormonal. I just don't know. I would be fine eating gluten free without a diagnosis but I think gluten may be an issue for my kids and my family has been pretty unsupportive of any dietary changes because doctors say they're fine. If there is an issue, it would be great to actually have a doctor help - I know a diagnosis just might not be possible though. My TSH was 3.19 (lab normal range was up to 4). The American Association of Clinical Endocrinologists have said people over 3.0 should be considered for treatment (Open Original Shared Link). At any rate, I thought it would warrant some further blood tests... We have a dentist appointment for my son next week so we're just waiting to hear what the she says.
It is possible you have NCGI but it is also possible you are celiac. Did your doctor run a total IGA test? If your total IGA is low that will cause a false negative. Your symptom cascade is a lot like mine. In my case it will be 3 or 4 days before the D hits but don't know if that will happen with you. It is IMHO significant that you were feeling alot better off gluten and then saw your symptoms return soon after you added gluten back in.
It would be a good idea to get your child evaluated further if you can.
I hope you can get some answers soon for both of you.
Yes, he did order the total IGA. It was totally normal. I suppose I will just stay off gluten and reap the benefits
. Thanks for your response. -
There's an AI condition called Hashimoto's thyroiditis which is associated with celiac disease. It is an autoimmune attack on the thyroid. People with it can have throat swelling and pain. Just something to consider. They test for it by checking TPO antibodies.
Thanks so much. I did have a TSH test come back (what I consider) high. But since it was within the labs 'normal' range my doctor won't run any more thyroid tests. I may have to shop around for a better doctor! LOL. I appreciate the advice and I will look into it further. Is hashimoto's genetic? I have family members diagnosed with hypothyroid but I don't think they were tested specifically for the antibodies...
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Absolutely you could order bloodwork while down in the U.S.
Open Original Shared Link
Awesome! Thanks very much!
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Where do you live?
In the U.S. it's possible for people to order bloodwork on their own from a private lab and self pay if their doctor refuses to order it.
Ugh, I wish I could! I am in Alberta, Canada. The attg iga is the only test here. I could pay $300+ for the antigliadin iga and igg tests from a naturopath but can't really justify it (especially since it isn't the most accurate test). If I travelled to the U.S. could I pay for tests while I'm there? We just noticed that my 5 year old's teeth are crumbling (plus he has lots of digestive/behaviour issues) but his attg iga was a big fat negative as well. I would love more tests for him...
. At any rate, I'm curious if there's an actual answer. Thanks!
Good to know that psoriasis reacts the same... food for thought.
Questions about what our son's gastro told us...
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
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!