Oh, no worries there. I haven't give up yet, despite everything...
I have an appointment in late April with a new Dr. who is an MD but also does some naturapathic medicine. The first appointment is a 1 hr consultation, so I should have time to go through all the details. And I think I'm going to make some notes so I don't leave anything out too.
Thanks for the support!
Well, just to update, we're now at 12 months of gluten-free and still no positive change. In fact, I feel more tired and spacey than I can recall in the previous couple of years. I went off dairy completely for a period of about 2 months, which had no effect on me, so I opted to start back up on that. Perhaps that was a mistake, but I'm not really sure.
On a slightly more positive note, I finally performed a celiac home test kit that I'd bought a few months back. The results came back as negative, which indicates to me that my body is not generating the antibodies to gluten, alas I haven't glutened myself. Now, I realize this is not definitive proof, however it is positive never the less.
My next step is to ask my family doctor to refer me back to the GI specialist who did the biopsy, and see what he thinks. I'm also considering trying out the specific carbo diet, which several people mentioned (although I had heard of it before).... although it sounds like a big pain in the a**, so I'm putting it off for now.
Thanks again to everyone for their contributions to the discussion... much appeciated.
Thanks to everyone for their input. I have been following along by email (those handy daily digests), but have been too busy to actually log in and reply. I ended up opting to postpone my Mayo visit to an as-yet-undetermined date.
I'm fairly sure I am celiac, given the positive Dx (blood test and biopsy), and the family history of it (cousin positive Dx, mother suffers IBS - never tested for celiac, etc.). Also, since being on the gluten-free diet I am gaining weight (a lot!). I wasn't thin before, but this seems to suggest something was wrong. However, as mentioned, I still feel totally fatigued all the time, and my energy level has been dropping year by year (for 12+ years).
I'm going to try to get an appointment with the GI who did the biopsy, and see what he thinks I should do. I'm also planning to get the results of my allergy test (2 years back) from my family doctor. I suspect a couple of possibles were missing, and if so I'm going to ask for another visit with the allergist.
Wow, this sounds like a recreation of my experience. Except I was 18 when I got the hives, so started taking Benadryl. During this time I was tired, fatigued, low energy, etc., but assumed it was the "drowsy" effect of the Benadryl. The hives went away (and returned for good about two year ago), so I stopped taking Benadryl, but the tiredness and fatigue never went away and has got progressively worse over the years.
I've been tested by an allergist, most recently about 2 years back (when the hives returned), and the only things I'm allergic to he could find were grasses (basically all of them), dust, dust mites and cats. Since it's winter here and I don't own any cats (though a friend recently got one), I'm a bit stumped about what's causing the hives.
I take Extra-Strength Reactine daily to keep them under control, and it works for the most part, but I worry about the long-term effects. After all, the box clearly says not to take them continuously (or something to that effect).
I'm a bit stressed at the moment, due to some health issues with other family members (Father and Grandfather simultaneously). However, I don't recall being that stressed two years ago when the hives returned, so I've all but rules that out.
Sorry to hijack your thread, but I'll be interested to hear any additional suggestions others may have, as they may apply to both me and your son.
Well, I did get the info from Mayo, and they have set a tentative date for me in early February. But I'm rethinking the wisdom of spending that kind of money, and have been trying a few changes around here.
For example, I've eliminated dairy where I can find it, started taking an iron supplement, and I've stopped eating at restaurants and using processed foods (okay, I had a baked potato at Wendy's once, but that's all). All I've got for my trouble so far is the worst week of fatigue and muscle aches in recent memory... but I'm not sure if that's from all the snow shoveling (gotta get the car out somehow) or the diet changes. In any case I'm hoping it will all pass soon.
I'm also going to do the home celiac test kit (not sure if it's sold in the US), on the basis that if it shows positive that means my body is still producing the antibodies, and thus I must be ingesting gluten somewhere accidentally. Oddly enough I've never succumbed to "cheating" on the gluten-free diet to date.
Thanks for your interest. Any suggestions are welcome.
Well, just to update everyone...
I went dairy-free as of Monday, and also started taking an iron supplement. I was trying to avoid soy, but I realized yesterday that a few items I ate do contain it. I'll slowly wean myself off those by week's end.
For the iron supplement, my pharmacist recommended Palafer. I had her check if it's gluten-free, and she spoke to the company (GlaxoSmithKline) and they said they can't guarantee 100% gluten-free due to outsourced manufacturing, but they don't knowingly put any gluten-containing items in there. Has anyone had bad reactions to this brand (aside from constipation, which I've read is a common side-effect)??
Thanks for all the help everyone!
That's what I always thought, but it just occurred to me to ask. I always make sure to wash my hands thoroughly after touching any gluten item, but perhaps I should wear gloves just to be on the safe side.
And I don't part with my money easily either, especially the $3,400 USD Mayo wants for a deposit before I see them.. yikes! But 12 years of being sick has a funny way of making one consider options that they otherwise wouldn't.
No, I'm not an athlete... and in fact I doubt I could run down the block these days. :|
I will make sure to ask my doc for the occult blood test next time I'm there, though I'm not sure I can poop on command, but we'll see.. lol. I mentioned this test to my mother, and apparently my Dad gets these on a regular basis to keep tabs on his ulcerative colitis... hrmm.
As I said, Mayo was kind of a last-ditch effort, which I wouldn't have done until probably March or so anyway. Thanks for the info!
I really don't eat as much rice bread as it sounds like... takes me about 3 wks to go through one of those tiny frozen loaves. And I have been doing baked potatoes (microwave style) a couple of times a week anyway, but only because I happen to like them.
Regarding Mayo, yes it probably is the same... but I'm just getting so fed up with my doctors here, with their reactive approach. It just drives you to grasp at straws. I wasn't planning on doing anything serious on that until Febuary at the earliest, if at all.
On a side note, I'm trying to go easy on white rice because I've managed to gain 25 lbs since starting my gluten-free diet... I'm now up to 205 on a 6' frame, which is officially the heaviest I've ever been in my life (normal for me was around 160-170).
Thanks for the advice...
Thanks for the reply.
I have copies of most of my lab tests, which I make a habit of asking for each time I visit to get results (if any). And yes, I have done all the normal thyroid tests several times. On last test TSH was 1.73, before that it was 2.00. But I'm still not convinced this isn't playing a role, as someone previously suggested that Adrenal fatigue can cause the TSH level to be low, even if you actually have low thyroid levels.
You mention shampoo... would that really cause a gluten problem? I thought it was only ingesting of gluten that caused the problem. I do occasionally handle gluten foods for the other person living here (my grandfather), but I never thought anything of it because I wasn't eating them.
Thanks for all the info and suggestions.
I tend to agree with this way of thinking, because I was told for nearly 12 years that I had Chronic Mono or CFS and there was nothing they could do. It was only through my sheer persistence and research that I realized it could be celiac disease, and then prompted my doctor to do the blood screening test (then followed by the endoscopy/biopsy).
So, based on this history, I figure there's probably something else wrong here, perhaps related to being undiagnosed celiac disease for 12 years, or perhaps unrelated. Either way, we just need to find it so we can do something about it. Only Once I've exhausted every avenue available to me will I resign myself to "managing the symptoms", and we're not there yet!
Thanks for the support and advice!
Where would one find the more detailed lab value source you describe? I tried googling for more information on the ferritin test, but it only gives generic information.
Just for curiosity's sake, I looked back at my blood tests as far as they go (2006), and I found that my Ferritin levels were low even then (41). So at least we know it's not a one-time dip.
I have never had an occult blood test done to my knowledge, but will ask my doctor next time I see him.
Thanks for all the help... much appreciated!
Sounds like purgatory to me... calling every company that is... lol.
I doubt it's cross-contamination at home, as I have my own foods which are labeled and separate, as well as my own utensils, dishes, cutting boards, pots and pans, etc. Although I must confess I don't do a lot of cooking at home... probably owing to the fact that I'm a 30 y/o guy.. heh
Thanks for the advice!
Thanks for the reply...
I have read that going off dairy and soy can help, but my main reason for not wanting to is that going gluten-free was difficult enough since I don't really like to cook.
As for the vitamins and minerals, I have had most of them tested and they all came back fine according to my doctor. Looking over my lab results (I always get a copy) I can see that my Ferritin levels are a bit on the low side (37, normal is 41-300), however my Doc has never flagged them or done anything about them... ?!
I may be living alone in the next few months, which should make it easier to control what I'm exposed to, if that's been the problem all along.
Thanks for the suggestions, very much appreciated.