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donnal

Puzzled

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My history includes having been tested for celiac with neg results (blood--had a scoping years before that and no abnorm cells were taken and tested). Well, I kept having gut issues as well as fatigue and a bad taste in my mouth and began reading about gluten-free diet so I went gluten-free back in April, then added corn-, soy-, dairy- and egg-free, adding back eggs which seemed OK. Each time I'd add back something, even gluten, I'd have mixed results (have been keeping a diary). So this past sund hubby and I went to Galveston for a couple of days and I ate everything wrong. On purpose. Well, the outcome was inconsistent. Some times I had pretty bad pain a/o bloating (up to 7 on scale of 0-10 once) but other times no problems. My main improvements, it seemed, on the diet were more energy, no bad taste in mouth, much less/very infreq gut issues (never D, always C has been the problem) but these didn't seem a problem on our time away (except, as stated above, sometimes gut issues). I have to factor in the point that there was no stress on this trip, whereas I have a fairly high level of stress normally. So, where does the diet fit in all this? Does the stress make the gut issues worse or is it possibly all stress related and not food issues at all, since I tested neg anyway (I know the tests aren't 100% reliable). My main concern is that if I have "borderline" gluten problems I don't want to make my body systems pay by eating it despite not having consistently evident "side effect". I am an RN so I know disease processes often don't manifest until damage is done and I don't particularly want that. On the other hand, there is no need to be trying to find appropriate foods if that is not really a problem. I thought maybe some of you out there might have some ideas of the directions I should head in now. Would it be "beneficial" to keep eating "wrong" until problems occur or should I just go back to G-, C-, S-, D- free limits? Thanks for any input!! DE


Donna Edinger

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Celiac.com Sponsor (A8):

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Have you considered having stool antibody testing? That may be helpful for you. Enterolab cannot diagnose celiac but they can tell you if you are forming antibodies to gluten, soy, casien, yeast and they can also measure the amount of fat to give you an idea if you are suffering malabsorption.

With the number of body systems effected by the antibody response it really is not a good idea to continue on gluten until you get severe symptoms if the diet is needed. There are some things that just may not be reverseable if you do that. Also US medicine unfortunately knows little about gluten impact on any system other than the gut. The risk is so high that it really would benefit you to avoid gluten if gluten is an issue.


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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There are some people who are gluten sensitive without having true celiac. You are right it could still cause degenerative disease(s). I think that if you feel better without it and the other grains etc. you seem to not tolerate well, avoid them. After a while you could challenge yourself again. It may be its OK for you to have these grains once in a while if you don't have true celiac. If you do, generally you will know it after you have been strictly off of the glutens for say 6 months.

The thing is however you could be getting trace glutens from other sources which would mask your response when you make the challenge. I was getting trace gluten from soap and shampoo and lotion for instance since vitamin E (tocopherol) in these products is usually made from wheat germ. Even animal food can be a source of this--so wash your hands after handling the food. And caramel color for instance is made from barley. Alcohol is usually made from grains so this too could be a source of constant exposure for you at work since alcohol is often used to clean equipment etc. Always use gloves! It made a huge difference for me to go off all this trace gluten stuff. There is a list here on Celiac.com of trace glutens in the home area that you can access. Then when I just got cross contaminated my response was D--which usually I never get. Like you its more C. Though not now being off all gluten.

For me it is worth being in this potentially more reactive state (if exposed to gluten) since without any of the glutens I no longer have joint problems and headaches and my eyes are not as sensitive. My energy too is growing in leaps and bounds and I am less subject to getting ill. If I do get exposed to trace gluten now I take probiotics or live sugar-free yogurt and pineapple or bromelain/papain right away to help counteract the immune response--and it really does help--that plus the following few days some detox herbs like dandelion, yellow dock and cleavers to deal with the resultant liver and lymph etc. toxicity and marshmallow root to soothe and heal the villi along with bromelain/papain which also takes down the inflammation.

It is said too that gluten isn't really that good for anyone since it is difficult to fully digest plus also due to the opiates involved, so avoiding it for the most part is good for everybody. The trick however is for you to figure out how strict and on the lookout that you need to be. Maybe you are lucky enough to be someone who really can feel better being off this stuff but can have it in a pinch or at someone's party now and then.

Good luck!

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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My guess is that the "taste" in your mouth is from Barley. If that is the case you should really be careful. barley is in everything. As a nurse you should know how important the immune system is. That is what is altered when you eat gluten, with or without "symptoms".

I would like to invite you to our Houston celiac support group meetings. here is the link

http://www.houstonceliacs.org/

not that they believes in gluten intolerance, but a lot of us know better & just overlook that ignorance.

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My guess is that the "taste" in your mouth is from Barley. If that is the case you should really be careful. barley is in everything. As a nurse you should know how important the immune system is. That is what is altered when you eat gluten, with or without "symptoms".

I would like to invite you to our Houston celiac support group meetings. here is the link

http://www.houstonceliacs.org/

not that they believes in gluten intolerance, but a lot of us know better & just overlook that ignorance.

Thanks for the link!!! I went to it and found the Tyler group's email--I had heard there was a Tyler group (I live in East Texas) but didn't know how to find out about it!


Donna Edinger

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