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Old 10-13-2006, 07:12 AM
kaylee kaylee is offline
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Hi everyone,

I was just reading for about the hundredth time a previous lurker's hello message after finally joining the forum when it struck me I should be joining myself...

I have been avidly reading, thinking about, and putting to good use the information, perhaps frequently better qualified as wisdom, available here for several years, so in some respects I almost feel as if I have been a part of this. Of course that's not actually the case, however, and I do want to change that now.

So, hello!

If I am here it is predominantly with respect to my soon-to-be four-year-old son, whose diagnosis and ongoing food sensitivity issues, like for so many of you, have been a long and arduous, at times overwhelming, process. In the course of all this, both myself and my mother have also been unexpectedly diagnosed, which has raised all sorts of other issues and questions of course (e.g. all those years of aches and pains that I was told were due to goodness knows how many potential causes, but which have entirely vanished since going gluten free in solidarity with my son).

I'm sure I'm far from alone in feeling I have a book's worth of material in our personal story, but I will stop there for now. I'm happy to be here!

Best, Kevyn
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Old 10-13-2006, 09:23 AM
jcc jcc is offline
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Hi Kevyn,

Thanks for joining in~ It is nice to finally meet you . I guess you know me.

I am truly interested in hearing people's stories, the twists and turns they've taken, previous diagnoses, etc., so feel free to share as much as you are comfortable with and have time for. You won't bore me .

We used to have a Diagnostic Journey's thread, which you've perhaps read. I think that is one of a few threads I plan to revive here. I'm still waiting to see if the old data will come back, so I can tie it into a new thread.

Is your son doing ok now, or does he still struggle with other foods? Do you have celiac disease?

It is nice to have you on board. I hope your post will inspire other lurkers to join, too!

Cara
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Old 10-13-2006, 08:43 PM
annelb annelb is offline
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Hi Kevyn, Glad you have decided to be more than a lurker.

Glad to hear that you are feeling better. Hope you mom and son are doing well too. I think it makes it easier if the whole family goes GF together.

Look forward to hearing more of your story.
Anne
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Old 10-13-2006, 11:02 PM
halsgluten halsgluten is offline
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Hi, Kevyn!

Yep, that is how it it often works. Good Job! It accidentally work for me, so I had my son tested and it works for him.

Hal

"(e.g. all those years of aches and pains that I was told were due to goodness knows how many potential causes, but which have entirely vanished since going gluten free in solidarity with my son)."

Hal
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  #5  
Old 10-14-2006, 08:30 AM
kaylee kaylee is offline
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Default the long and the short of it

Hi again and thanks for the welcomes!

I also get a lot out of hearing others' stories, which is one good reason to keep coming back to this forum (along with all the ideas and suggestions).

I'll write a short reply with hopes of getting to a longer one - I'm not always sure how much time I'll have, with the above-mentioned 4 year old!

The quick answer is, we've all three been diagnosed through TTG testing but not by looking at the intestines directly. I didn't feel the need to go that far, and my mother was completely uninterested in a biopsy process, given prior symptoms and their reversal on a gluten-free diet, plus all the VERY dramatic gluten incidents since. So, gold standard or not, it certainly resembles cd in many ways. Call it what you like, the end result is that being gluten free has become an absolutely essential part of our lives. I feel better than I ever had, no more fatigue, pain, extremity tingling, anemia etc. My mother's lifelong ataxia has vanished. But really the changes are most profound in my son. The problem remains, however, that he has had quite intense continuing intolerance to an increasing number of foods (eliminated completely so far are dairy, soy, corn, the whole palm family (as bad as gluten and dairy put together, it seems), sulfites and, oddly, raspberries). Feeding him is a challenge to say the least. The one good aspect is we started him young enough that we haven't had to make the obviously really hard shift away from gluten with his being already fully used to it. He has no idea at this point of what it tastes like and shocked me before age 3 by pointing to bread in a bakery window and saying "that's gluten - it makes my tummy hurt" in the most matter-of-fact way.

Since it looks like I actually do have a bit of time, I'll start a bit on the story. In the past it has felt good to write things down as it has seemed very isolating, emotions have run high, and energy has run low. The lack of support from our pediatrician is rather inexplicable in hindsight, but there was truly an almost complete absence of support. I realize there are very understanding and competent doctors, we just didn't happen to have one. My feeling like an incompetent and neurotic first-time mother every time I left her office after pleading with her that there was something wrong with a baby who virtually never stopped screaming or crying was a very debilitating experience. Her answer each time was "babies cry" or "give him Tempra it's his teeth." I won't belabour the point, but it was a negative experience. I did finally start to trust myself enough to leave that pediatrician. By that time I had started living on the Internet, plugging in symptoms and coming up with cd and I thankfully found a doctor willing to give the test (our first pediatrician refused as my son didn't have constant diarrhea, but alternating with constipation). The minute the test was done we took him off gluten (and the rest is history...). Within 4 days my husband and I agreed the screaming fits weren't lasting quite as long, the intensity of the crying was quite, er, as intense. After 5 days my sceptical husband (and that's another chapter!) agreed we were on to something.

By that point the test results were basically of only mild interest.

After 2 weeks we also removed dairy as although there was a dramatic improvement, there was still a lot of residual unexplained crying and diarrhea. The transformation at that point was miraculous. We suddenly had a child who smiled spontaneously (this was at about 16 months). We look back and realize that he smiled so rarely that at the slightest hint of one we always whipped out the camera to have a picture. ALL his early photos are completely unrepresentative of what life was like. It's hard to be objective, but I feel fairly comfortable saying that he was in a negative space 95% of the time, which dramatically switched to his being in a positive space about 85% of the time after gluten and dairy were removed. He had NEVER (that's my way of indicating I am not exaggerating!) slept more than 2 hours at a go, had obvious frequent headaches, excema, fierce scarlet cheeks, a massively and continuously bloated abdomen, a trailing off growth chart (barely third percentile), dianosed anemia, all the intestinal stuff, and other symptoms I'm sure I've put out of my mind by now.

Oof. I din't expect to be delving into all this again!

WE had about a year of tremendous time. His hair and nails started to grow for the first time since birth, mood was much more consistently good, sleep patterns were unrecognizably transformed, headaches vanished, etc. Then new sensitivities started to appear and the feeling of dread about going back to our previous experience was almost unbearable ("this can't be happening!").

I am going to have to be going now, but the new food problems have been a challenge and I am always interested to hear anyone else's experience with them.
That was a bit more of the long version than I had planned!
Thanks again for the welcomes. Kevyn
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Old 10-14-2006, 08:56 AM
annelb annelb is offline
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The story of persistence when a doctor is poo-pooing the idea that something is wrong is a thread common in so many of our stories. I see parents like you as heroic.

Many of us have found that we are constantly testing what foods we can and cannot eat. Dr. Fine even mentioned this constant testing. He said that he just discovered flax caused pain in his thumbs.

I hope you find what is bothering your son. I hope he is not having severe symptoms. Have you considered doing an IgG food panel test?

I am GF, dairy free, yeast reduced(impossible to get rid of all yeast), egg free and soy free. I am hoping nothing else shows up for me.
Anne
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Old 10-14-2006, 08:58 AM
pakisa100 pakisa100 is offline
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Welcome Kevyn and Hal!

I just wanted to say that, Kevyn, you've described my son exactly (except for the bloated tummy). That was a long 4 years ago. I also totally related to what you said about the odd smile and taking pictures of those moments. I also look at those old photos and think, 'That's really what I wished our life was like but it wasn't like that at all.'

I also really related to you saying that 95% of the time he was crying. My boy too. Now when I see children like that, I can't help but tell the parent how our lives have turned around, in hopes that they will follow up at some point in the future for their child.

My son also reacts to some weird stuff... but not so weird as I seem to react as well but never really put much focus on it...

Bandaids: the glue creates welts on our skin. I haven't found a bandaid yet that we are able to use longterm. The welts left on my skin after my c-sections were awful and the nurses were horrified as they took the bandaging off and a few layers of skin came with it. Don't everyone think it was painful though... at that point it was so incredibly itchy that it actually felt good. And the pain later wasn't too bad as I was on some decent painkillers.

Kiwi: Ds can't seem to eat it at all. We even tried them back in this last summer (taking the seeds out, even) and he still got diahrrea.

Banana: Ds eats bananas fine, one after the other... but if I eat a whole one raw, I get numb lips. I can eat them if they're cooked though. I just learned, this year, that this is called an oral allergy and that cooking them inactivates whatever it is that I react to.

Citrus: Ds avoids citrus and seems 'not quite right' after the odd ingestion. I don't know if it's an acid thing or what. He avoids it which is fine... I make sure he eats a fair bit of cabbage for his vit C.

I'll try and think of other things... but honestly there were so many at the beginning that I'm starting to forget now. (Oh, nightshades and the lily family - onions/garlic had to be cut out for a year or two at the beginning but he makes his own salsa now and loves it.)

He used to be a whole chart below the charts and now is on the bottom line of the chart. Typically celiac kids (according to a study I read recently) gain weight first and then put their energy into bone growth. My son did not. He had bone growth first and I am still having difficulty putting weight on him... but as I said, he is MUCH closer to where he should be than he was three years ago.

So some of us do deal with more than 'just celiac'. And perhaps we are the lucky ones because these children become the barometers for our families and we all end up getting well together.
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Old 10-14-2006, 12:34 PM
jcc jcc is offline
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Kevyn,

I can relate to much of your story, especially the negative experiences with pediatricians minimizing things. For me, that hit an all time high (low?)when the pediatrician suggested the descriptions I gave of my then 12 year old's seizures as being 'teen dramatics'. I insisted on a referral to a neurologist, where thank goodness everything I described sounded like seizures to them, and we got a positive EEG for seizures, too. (geeze, I had called 911 and my husband came home from work to meet us at the doctors office... my daughter would have deserved an academy award if she was acting )

I was so angry for many years. I still avoid doctors the best I can, and thankfully we don't need them much anymore since going gluten free. I met one pediatrician via the Internet who really helped me to resolve some of the anger I held for many years. It isn't like we 'worked' on it. She was just so kind and caring and validating~ it just eased so much of the past. She was also the mother of a two year old gluten sensitive son, with some autistic traits, opted against a biopsy...etc., so she had lived this from both sides. I've also since met a couple other "Internet" connected doctors, who answered my desperate email queries with more care than my 'home' doctors. But... like you, I have had enough bad experiences to last a life time. Time helps, too. Gosh, and when I think about it, just being able to talk about it with so many others on forums like these probably helped me to process a lot of my emotions, too.

We still struggle with other foods, too, for my youngest, in terms of loose gassy stools. NOTHING like it used to be before we removed gluten. She has normal frequency. No more stomach aches, skin rashes, neuro symptoms, leg pain, or any other complaints ...just an occasional slump into gassy loose stools (which doesn't seem to bother her, but bothers me). I've actually found that when she eats a lot of bread, she improves, which leads me to believe part of the problem may be a lack of fiber in her diet. Also, when we strictly eliminate cow's milk, she usually does very well. She seems to tolerate corn, apples, strawberries as long as they aren't frequent. For us, sometimes I think it is more a matter of staying on top of what we already know.... but I don't consider her 100% fixed, but close.

It is a continuous process, though, for many of us.

Cara
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  #9  
Old 10-16-2006, 07:12 AM
kaylee kaylee is offline
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Hearing directly from you about relating to our experience is very, very uplifting. I of course know, mainly through reading, that others have been through a similar process, but that has tended to get lost at times, especially when in the midst of a particularly lengthy or severe episode/series of episodes of clearly food-related physical and behavioural reactions. I can't say how much it means, to be heard.

Interstingly, it turns out that we have just been through perhaps the most positive 2 weeks - not a single food-related episode of any sort - well, ever, really. Having eliminated all the foods I have pinpointed as problems for my son (and the most recent appearance of a new sensitivity dates to about a month ago), having been using probiotics since last March and digestive enzymes since August, I was lucky enough to meet recently an amazing naturopath working at a local drugstore who seems to have taken me under her wing. I went in there one day in a state of utter desparation, one of those days where the mere mention of my son having problems with food would start tears flowing no matter where I was, and poured out my story to her. I was looking to start more supplements as he seems likely to have A) some vitamin or other deficiencies and B) some underlying problem that makes all these new intolerances keep appearing no matter how good his diet. (BTW, his last pediatrician informed me that dealing with all the intolerances was in my hands as he is too complicated a case for someone else to have the time to figure out). Well, not only was this person reassuring about figuring this out, she followed that up by personally calling all the companies whose supplements I was interested in to verify ingredients (my son reacts to the tiniest trace amounts). Having done tremendous amounts of research and reading (and I KNOW you can relate to that!) I was pretty sure about what we should be trying, but had not gotten around to do so for fear of introducing anything new at all. Anyway, feeling beside myself with concern yet again and having this naturopath's support and help finally did it, and I started him on zinc and l-glutamine. It may be too early to report anything definitive, and there are still other supplements worth trying, but ..... I kind of want to say something about what I'm seeing! No episodes and virtually 100% good mood. Unbelievable frustration tolerance. HE BRUSHED HIS TEETH WITHOUT A SINGLE WORD OF PROTEST FOR THE PAST THREE NIGHTS. Now, I do realize this may change again. We have had many very hard back-to-square-ones in the past. Still, this seems different.

I am so happy to be writing this down I'm not paying attention to time, and must be off.
Best, Kevyn
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