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mushroom

Member Since 03 Jan 2008
Offline Last Active Private
*****

#636163 What Can I Do To Get Through This?

Posted by mushroom on 31 August 2010 - 08:56 PM

It is hard to get over the first weeks of craving gluten - it is like quitting smoking and your body is crying out for its fix. You must strengthen your resolve and find other things to eat, like carrot and celery sticks, nuts, seeds (spend your pocket money if you have to) to get you through these first weeks. Once you get over the withdrawal you will start to think of gluten the way we all do, as rat poison for our bodies, rather than something to crave.

Just hang in there - you can get over this hump!!
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#635770 Why Do Dermatologists

Posted by mushroom on 30 August 2010 - 10:32 AM

The problem seems to be they are not taught it in medical school :unsure: or how to biopsy for it :P
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#635768 Have Any Opinions About B12...?

Posted by mushroom on 30 August 2010 - 10:30 AM

Your levels are low and I would also take the injections. I did, and I only need them every three months now - I can't do the sublinguals.
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#635608 Birthday Cake Drama

Posted by mushroom on 29 August 2010 - 03:26 PM

And your point is....? :)


Agree. Sounds like she needs some serious pissing off :)
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#635432 I Think I Have Celiac Disease

Posted by mushroom on 28 August 2010 - 07:13 PM

I agree with Lucia. Have your doc particularly check you for deficiencies in Vit. D (leads to osteoporosis), B12, folate, A and K, also calcium, magnesium, potassium, zinc, and also ferritin (iron deficiency is very common). All of these deficiencies can leave you feeling lethargic, depressed or worse and be the cause of many of the side effects you are suffering from your gluten intolerance.

Don't be put off! With your family history and your own history it is obvious that gluten is a problem and you need to be sure that all your bodily systems are functioning properly or you will not recover. If necessary, go to another doctor to get the testing if your current doc will not do it for you -- it is that important.

Good luck on making a full recovery to robust health. But be prepared that you may have to fight the medical establishment a bit to get there. Be persistent :)
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#635188 Guess What Guess What!

Posted by mushroom on 27 August 2010 - 03:59 PM

So have you eliminated all grains? Potatoes? or just some? I would be interested in knowing. :)
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#635080 How Reliable Was This Test In My Path Towards Diagnosis?

Posted by mushroom on 27 August 2010 - 07:40 AM

Thanks for the excellent replies guys.

My doc ran a celiac panel and it came back negative. I had been gluten free for about 1 - 2 months before I got the panel done. He did check me for a couple of vitamin intolerances and the only one that came back that I was severly dificient in was vit D.

Any advice would be appreciated! Thanks! :)


A celiac panel run on a gluten-free person should be negative anyway. The tests check for gluten antibodies, and if you are not consuming gluten the antibodies should not be there. That is part of our problem with doctors - so many do not know how quickly the antibodies can disappear. Not to say necessarily that the test would be positive on gluten, as Ravenwoodglass says, or the biopsy for that matter. I didn't even bother with the tests because it was clear I had a problem with gluten.

Vitamin D deficiency (and later osteoporosis) is one of the most common side effects of gluten intolerance/celiac.
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#634032 Annoying Doctor

Posted by mushroom on 23 August 2010 - 10:54 AM

If you are part of an HMO I would also send a copy to the HMO. I did that to a doctor who was inexcusably rude, arrogant and sarcastic, and boy did it produce results. All patients are entitled to be listened to and treated with dignity and respect, not walked all over by rude, arrogant @ss%*!#s who don't even know what they're on about. Most often these are the doctors who are intimidated by patients who do actually know something about the subject they are so ignorant of. I wrote my letter, then left it for a few days until I cooled down a little, then refined it into something more coherent and cutting. :ph34r:
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#633968 Upset And In Need Of Advice/help!

Posted by mushroom on 23 August 2010 - 08:35 AM

Most people will have SOME antibodies; each lab has a reference range for normal. For some the normal range is 5< , with borderline between 5 and 10, and everything over 10 positive, for example. So a result of 3 would be negative, a result of 9 would be high borderline, and a result of 32 a definite positive.

Rather than going to a GI, it might be more productive to go to a dermatologist and get the rash biopsied. They take a small sample of skin immediately adjacent to a a rash lesion, not of the rash itself, because the antibodies are found in the adjacent tissue. A positive biopsy for dermatitis herpetiformis is a diagnosis of celiac disease.

The disease expresses itself in different ways in different people. For some it is the intestinal tract, for others the skin, for some migraines, for some they have only neural symptoms. And the level of antibodies varies widely also. Many believe that "borderline" cases will become full-blown celiac eventually. So yes, it is all very confusing, and getting an actual celiac diagnosis is not easy, especially in Canada it seems, where specialist waiting times seem excruciating.

Your symptoms do sound suggestive of a celiac problem, especially if your daughter has it - does your rash blister and leave purple scars? Does it look like any of the rashes you have found in on-line links?
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#633748 Stupid Things People Say

Posted by mushroom on 22 August 2010 - 08:22 AM

This is totally insane, that a neurologist would not know that neuropathy can be caused by gluten :blink: . In fact, for some it is the only symptom. You have the weight loss as well, which is another classic celiac symptom. My sister went from normal to "a bag of bones" in a very short time. Nausea, low B12, iron and D - well, this guy knows nothing about celiac :wacko: And sorry about your non-supportive boss.

Here are some {{{{hugs}}}} for you and I hope your biopsy results can confirm your diagnosis. Make sure they take at least five or six samples because there is a lot of small intestine and the damage can be patchy and is really only visible under the microscope unless it is really bad, when it can be seen with the naked eye.
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#633741 Hospitals

Posted by mushroom on 22 August 2010 - 07:58 AM

There are quite a few people who have had horrible experiences in the hospital so I would err on the side of caution.


I am sorry to tell you that I was one of those. The hospital I was in had special diets for everything except celiac, about which they had not a clue. Even though they sent the dietitian up to talk to me, if I had relied on them to keep me safe I would have been both glutened and soyed every day. Other hospitals I know do a better job than that, but the trust is gone. Luckily I had my husband there and a Whole Foods just two miles away :)

If he is having such serious surgery the last thing he needs is gluten and I would definitely err on the side of caution, as ravenwoodglass advises.
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#633650 *sigh* Went To The Gi, More Confused Than Ever

Posted by mushroom on 21 August 2010 - 07:03 PM

question- is Psoriatic Arthritis another one of these illnesses that is common in Celiacs or people with Gluten Intolerance??? i'm curious


Yes, it is an autoimmune disease associated with celiac - both the psoriasis part and the rheumatoid arthritis part, I just got them both together although the RA is seronegative.
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#633556 Just Diagnosed, Questions Inside Post

Posted by mushroom on 21 August 2010 - 09:33 AM

Just to answer one question, those with undiagnosed celiac disease often have difficulty conceiving or carrying a child, but once you get the gluten out you should be fine. :)
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#633533 *sigh* Went To The Gi, More Confused Than Ever

Posted by mushroom on 21 August 2010 - 07:33 AM

Let me add my two cents worth here :P

Thirty-five years worth of IBS and fibromyalgia diagnoses (until my psoriatic arthritis, that is, and it's still not related to diet!!! Two and a half years down the gluten free path, with many food intolerance milestones along the way, me telling the docs what I have, what deficiencies to test for, what and when to prescribe for me (I know so much more about it than any of them :P ) and still I am not right - electrolytes way out of whack and I just this week consulted a nutritionist, who said she didn't know how I was still walking around :huh:

I am waiting for her written report and a workbook she is sending me (hope it comes today), but in the meantime have ordered and received from Kentucky some special probiotics which have 450 trillion! organisms of seven different strains which I am to take every day (no this lady is not a crank, she is a very well respected researcher, wrote a book on Vitamin D3 and a famous document "The Lectin Report" - www.krispin.com).

You have, my sweet impatient one, embarked on a journey which is going to take a while and quite a bit of work, so do not be impatient, impulsive, impetuous :lol:. Just work it through :) {{{{{Hugs}}}}}
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#633241 Does Anyone Have Bad Reactions To Quinoa?

Posted by mushroom on 19 August 2010 - 09:53 PM

Saponin is a natural protection against insects and herbivores.


Saponin must be the lectin content in quinoa which does me in. I don't think you can soak it off???? Well, maybe a little bit, like kidney beans, but it doesn't all come off for those who are extremely sensitive to it.
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