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KristiAnne

Really Gluten Free?

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never mind


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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My suggestions are:

1. You may need more time to heal and you may get sick to random foods just because your intestines aren't healed.

2. You may have intolerances to other foods in addition to gluten, the most common being lactose. Lactose can usually be re-introduced once the villi have been healed.

3. You may have developed food allergies.

I took amost exactly 1 year after starting the gluten-free diet to start feeling almost 100% better and to get the gluten-free diet right. I hardley noticed any difference within the first 6 months on the gluten-free diet, everything seemed to make me sick. I felt about 60% better after 6 months, with a few episodes every week. Then I realized I was eating gluten-free chips that were contaminated. Once I cut those out, I finally started feeling a lot better.

I also developed a lot of allergies around the same time I started getting sick with celiac disease. I developed even more after being on the gluten-free diet (see my signature). I suggest getting allergy testing done.


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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I echo CarrieFaith on the statement that you are still healing and may be reacting to safe foods. I know that I thought I was getting glutened every week or two when I first went gluten-free, and while I may have actually been glutened some of the time, it's more likely that I was just having bad days as I was healing.


ELIZABETH

gluten-free (04.17.2006)

corn-free (03.27.2007)

xanthan gum-free

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Sophie, I don't think that anyone is denying in any way that you had a reaction, and it sounds horrible. There are others who have reported similar reactions. However, like Richard said, all of the scientific evidence, from all the Celiac experts, say that it is not a Celiac reaction. That is not to say that you aren't reacting!!! But, it could be a gluten allergy or some other sort of mechanism.

Dr. Green even specifically has a chapter in his book about Celiac myths. #4 is "vinegar contains gluten." #5 is "distilled alcohol contains gluten" # 6 is "gluten is absorbed through the skin"

he specifically says, "if specific products irritate or inflame your skin, you should stop using them. but do not blame them for causing celiac disease or dh"

the reason that I am writing this is also not to start an argument...but, it is because this is a public forum where we try to provide medically accurate information to all members.

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I echo CarrieFaith on the statement that you are still healing and may be reacting to safe foods. I know that I thought I was getting glutened every week or two when I first went gluten-free, and while I may have actually been glutened some of the time, it's more likely that I was just having bad days as I was healing.

This is the same experience my husband had for about 7-8 months into the gluten-free diet.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I've also found out that, while trace amounts may not elicit a reaction, trace amounts for a few days in a row will. (took a pill with bad starch in it. no reaction until about day 4)

so, inadvertent glutening can be hard to track down. until and unless you're POSITIVE that everything is gluten-free. Oh, and as a newbie I also found out that airborne flour will get you. Makes sense really, it hits the mucus membranes in the nose and sinuses. That mucus drains down the throat and into the digestive track :huh: as part of the healthy self cleaning function of the nose, and wala! Gluten ingestion.

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