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SGWhiskers

Seriously?

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I think I'm OCD compulsive about preventing these stupid attacks, but here is another one. I'm not able to go more than 3 weeks without poisoning myself. I stayed late at the hospital last night and am paying for it now. 5:45 rolled around, and I felt a wave of pain, nausea, confusion, teariness and fatigue. Someone had microwaved a TV dinner in the next room, and the patients dinner carts arrived. I couldn't just walk out with patients still needing my reports, so I hurried, and stayed until I could get the basics done. I just felt worse and worse.

The other possibility is that about 30 minutes earlier, I had an itchy jaw, hands that hadn't been immediately washed, and a nice suit that I didn't want to smear makeup on, so I went with my old standby of trying to scratch with the back of my forearm. I didn't remember that I had carried a washed tupperware that formerly held gluten earlier in the day with that arm.

Seriously, I'm feeling a good bit of rage about the sensitivity of this disease. I'm also starting to reconsider if I should be trying to get in the clinical trial.

Thanks for listening to the vent.

SGWhiskers

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I'm sorry that you are that sensitive. It seems like enough of a burden to have celiac disease without being so sensitive that touching that container made you ill. Sometimes it feels like we should just be in a bubble. I really don't have anything to help you but I wanted you to know I'm thinking of you.

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honestly i think you have another sensitivity, being in the next room from a microwave meal or touching a container that was washed after holding gluten and then touching your face i dont see how you can be that sensitive with out getting sick no matter where you go just from touching stuff that people who have touched gluten touched.

do you get sick from walking around the grocery store?

do you get sick from walking by a fast food place?

im not trying to be rude with this at all but there is uber sensitivity and then there is looking for a cause that isnt there. i think its another sensitivity or extreme stress causing it, your mind can also make your self sick, if you really thing your going to get sick you will. my mother has told me about a patient she had when working in surgery that was convinced she wasnt going to survive surgery and she didnt, IIRC there was no reason why the patient should have died.

-matt

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Angle,

Thanks for the sympathy. It's nice to have a virtual hug to ease away some of this crummy feeling. I don't think it was touching that container, but rather any residual crumbs that clung to my arm transferring to my jaw/lip area when I rubbed my face. If that was it, I must have swallowed a bit of it.

Matt,

I didn't take your post as rude. Maybe I should be looking at something else. Yes, I do get sick at the grocery store. I had to quit going a couple months ago after recurring attacks. Hubby is doing the shopping now. I have not had the occassion to walk past any fast food stores. I "seem" to have a problem with being around hot gluten like pizza or pie, but small things like coworkers pasta lunches don't bother me. Maybe your right ant it is something else.

4 years ago, I was tested for the big 8 food allergies, and basic environmental allergies. Unless my list of allergies has changed or grown, I don't think any of those could be doing it.

Now, with regards to looking for something that isn't there and making myself sick, you sound dangerously close to my pre Celiac diagnosis doctors who wrote off symptoms as all in my head. (she says teasingly). I just can't explain away happily typing away at a computer and then shifting to this glutened feeling while I typed without looking for a reason. Nothing I can think of changed, but maybe it is something I have not been looking at. Hormones? Other sensitivity? Other autoimmune disease? Allergies?

I had the horrid post gluten night terrors last night again. They are the only time I wake myself or my hubby up screaming and they tend to fade several days post gluten.

thanks for the vent/rant.

Anyone know if you have to eat gluten in that trial?

SGW

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Angle,

Thanks for the sympathy. It's nice to have a virtual hug to ease away some of this crummy feeling. I don't think it was touching that container, but rather any residual crumbs that clung to my arm transferring to my jaw/lip area when I rubbed my face. If that was it, I must have swallowed a bit of it.

Matt,

I didn't take your post as rude. Maybe I should be looking at something else. Yes, I do get sick at the grocery store. I had to quit going a couple months ago after recurring attacks. Hubby is doing the shopping now. I have not had the occassion to walk past any fast food stores. I "seem" to have a problem with being around hot gluten like pizza or pie, but small things like coworkers pasta lunches don't bother me. Maybe your right ant it is something else.

4 years ago, I was tested for the big 8 food allergies, and basic environmental allergies. Unless my list of allergies has changed or grown, I don't think any of those could be doing it.

Now, with regards to looking for something that isn't there and making myself sick, you sound dangerously close to my pre Celiac diagnosis doctors who wrote off symptoms as all in my head. (she says teasingly). I just can't explain away happily typing away at a computer and then shifting to this glutened feeling while I typed without looking for a reason. Nothing I can think of changed, but maybe it is something I have not been looking at. Hormones? Other sensitivity? Other autoimmune disease? Allergies?

I had the horrid post gluten night terrors last night again. They are the only time I wake myself or my hubby up screaming and they tend to fade several days post gluten.

thanks for the vent/rant.

Anyone know if you have to eat gluten in that trial?

SGW

im not trying to poo poo your reactions or saying its in your head to brush it off (i didnt get that you were saying i am just want to explain my thoughts a bit better). i just dont see how you can be that sensitive in certain situations yet in other areas that should have as much contamination you are fine. i just really think there has to be something else (not necessarily that gluten isnt triggering it just that it is being magnified exponentially by something else).

if i was you i would try to find some one that does applied kinesiology and/or the bioset method of allergy/sensitivity testing. the guy i go to has been able to find a lot of stuff with me and my family that other docs would have never even agreed could cause issues (heck he was the one that DX'ed me with celiac).

maybe you have something that is really messing with your body that the trace gluten ends up being the straw that breaks the camels back

-matt

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You also need to factor in that for some gluten is a delayed reaction. It may have not been what you were in contact with that night it may have been that you were unknowingly CC'd 3 or 4 days before. Not all of us have immediate reactions for some it takes a bit for the reaction to appear. That can make things even more confusing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I agree with Ravenwood. When CC'd it often takes me a day or two before my symptoms show up. Symptoms can vary as well.

It helps to take marshmallow root capsules or powder in water to soothe the intestines. Also helps to take bromelain/papain to allay the inflammatory response. ditto with enterically coated acidophilus. Dandelion or milk thistle caps also help by taking the stress off your already taxed liver....Plus drink lots of fluids, eat lots of greens.

For myself and many other super sensitives going on a more cave man or paleo diet seems to help a lot, i.e., avoid all grains for a while at least...Eat roots and squash instead for the carbs... Also helps to investigate other potential sensitivities/allergens. Plus avoid sugar.

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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