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Ack, Feel Like I'm Chasing My Tail

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Well I finally got to the allergy clinic after several doctors refusing to send me and wanting to blame it on anything from depression to irritable bowel to chronic fatigue (I thought they were meant to eliminate all the other potential physical causes first :angry: ) One sent me for bloods some of which came back positive and then told me she didn't know what they meant :blink:

When I got to the clinic the doc there didn't do any allegy testing and put me straight on the elimination diet instead which comes a close second in the running for a perfect hell. Now after about a month of feeling great I'm exhausted and irritable due to the poor nutrition of the diet, the challenge reactions, getting more so and far more sensitive on top of it. I've had a few nasty reactions with the challenges so far (not suprisingly wheat but dairy and amines I've had some reaction to as well) I've still got a stack left to do and the sulfites is a real worry, the last time I had something with 220 in it I was violently ill, they want me to do the tests at home, no way am I going to do that, I don't want to end up in the emergency room again.

Anyhow, I want to go get a complete allergy scratch/bloods and celiac screening. They've already told me I'd have to eat gluten to be tested for celiac (which will last about 3 days before I'm ready to leap off the gap) are there any tests that don't require I eat gluten for any more than a day or two? I get nailed by just a small amount and by day 3 it's about as bad as that part of it gets, I wouldn't risk longer than that, I don't want to get back to the stage where I can't even drink water without being in pain. Will a scratch test be enough? What's the difference between gluten allergy and celiac?

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I'm kinda new to all this, but this is my understanding. An allergy is an IgE response, and its usually things like hives, trouble breathing, shock, trips to emergency room. Gluten intolerance is an IgG response, which is a more delayed response usually. Celiac disease is a gluten intolerance which has gone so far as to kill off the hair-like structures inside your gut.

While it is often helpful to have a diagnosis, many on this board dont bother. You can pay cash for testing through various labs - enterolabs (i think thats it) does very accurate testing (i believe of stool). I did a blood test through A.L.C.A.T (if you dont put in the dots, the name gets changed on this website, but you can goodle it without the dots) does a blood test which can test for tons of different foods, additives, etc. I believe the enterolabs tests are the most accurate even if you havent been eating the item, but the AL CA T can also find things you dont eat - for example, my worst reaction was to duck, which i have eating maybe a half dozen times ever, and not in 2 years. However, neither of these tests are accepted by most doctors.

But the real question is - do you really want to feel sick by eating things, just so a doctor can write down on a piece of paper that you have a disease? If they say you dont have celiac but you feel sick when you eat gluten, you arent going to eat more gluten! Doctors really arent very good at much but giving pills. Dont expect a doctor to come figure out what exactly is wrong with you and fix it for you, they just dont do that. THey prescribe pills, thats what they are paid to do, by the pharmaceutical companies.

Sorry you are so sick and hope you find a way out of it

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About 18 years ago was when I had the worst of my symptoms (just after I had my eldest son, yes it's been going on this long and a stack of misdiagnosis in the mean time where the treatment made me worse eg: "irritable bowel, eat more high fibre cerials") I don't ever want to get that sick again. I don't know if I posted on it before but I lost 4 stone in 6 weeks and ended up eating high calorie foods just to keep some weight on, I was up the hospital on average twice a week in agony, all the stomach problems described, I couldn't even drink water without my stomach cramping. They took my blood pressure and it was dangerously low, the nurse couldn't find my pulse, guess what happened, the idiot doctor came down and called it anorexia, he then threatened to put me in the psych ward accusing me of starving myself! At another hospital the nurses thought me being glued to the bathroom was funny. You know they didn't even put in a drip to rehydrate me. This went on for 2 years. Meanwhile I got so small I was flat out finding clothes to fit and had to buy stuff from the childrens section. I went home and started making out my will. You know how I finally stopped most of it? I started alternating fasts a few days with eating a few days to give my system a rest, started a food diary cutting out anything I reacted to and just about bought out the local chemists supply of imodium. I have no idea just how much damage all this has done to my body. So am I going to eat gluten for 3 months to satisfy a bunch of medicos who can't get anything right? are they going to treat me if I get that sick again? I don't think so.

Anyway no doubt this has done some damage, so what damage is it likely to have done? Is there a pattern of related problems that can be tested that are unique to celiac? (eg bone density, anemia, bowel, brain etc) If they can't test for celiac directly can they test for its long to medium term effects? After all this I really should be getting tested for that stuff anyway.

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Kareng, I am a bit concerned by your statement here.  I no longer have "out of control" DH, but smaller, more scattered, and more readily resolving (for the most part) flareups.  And it may be that I am just having what would be "normal" for a person in my situation, being 'only' 13 months into the gluten-free diet.  I will readily admit, and perhaps should stress, that the situation is very much better than it was before I went gluten-free, including the fact that my former GI symptoms have tot
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