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2004 Celiac.com Feedback

Subject: Celiac.com
Date: Thu, 22 Jan 2004 09:48:56 -0500

Hello,
I found out that I had celiac sprue 3 years ago. I just wanted to thank you all for such a great web site. Of all the places on the web for celiac I find yours the most informative. I learned things here that I havent found anywhere. I signed up for the free news letter and I will visit your site regularly. Thankyou for helping me understand more what is going on with myself. Lets get more doctors aware of this as I have had systoms of this disease sense since the age of 16 ( I am currently 33) I am very poor I wish that there were more enexpensive alternatives to replace the foods I now cant eat. Thanks to your site I realize that I need to save money to get tested for type 1 diabetes. Thankyou again for your informative site.
Christine Thomas


Subject: Article in Feb. 04 Readers Digest
Date: Sun, 1 Feb 2004 10:39:17 -0800

Hi Scott-

Your work on Celiac.com is greatly appreciated! Im a long-time nurse (42 years) and the grandmother of 4-year-old Katie who was diagnosed shortly before her 3rd birthday by her mother (my daughter). Katies diagnosis has not been confirmed by an official lab test or procedure, but it is obvious by her symptoms. She has been on a strict gluten-free diet since we first became aware of her problem. Contrary to my wishes and advice, they chose to continue with the diet and have her tested when she is a bit older. I believe this is based on the fact that Katies dad is in a bit of denial, thinking she will outgrow it.

Keep up the great work!
Alice


Date: Sun, 08 Feb 2004 11:31:37 -0500
Subject: Rice Beverages


Dear Mr. Adams:

I first want to express my sincere appreciation for your website. Because of the information it provided, I was able to diagnose the cause of my daughters asthma and skin rashes. In addition, I have cured my own, chronic bronchial and sinusoidal infections. THANK YOU!
Robert L Fireovid


Date: Thu, 12 Feb 2004 17:50:00 EST
Subject: Celiac.com

Hello Scott, I want to tell you how absolutely fabulous your newsletter is. THANKYOU!

Yesterday, I received an e-mail about subscribing to the newsletter. I assumed that
because I am a subscriber, my subscription must be running out so I renewed for
another year. Please check to be sure the renewal that I did yesterday will extend my
current subscription. Thank you again for a fabulous newsletter.

Laurie Whitehill

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Date: Fri, 14 May 2004 07:53:44 -0500
Subject: Re: Celiac.com Update

Celiac.com Update Dear Scott,

It never ceases to amaze me...the information you provide lines up so well
with our experience with gluten intolerance and numerous issues related.

The article Are Commensal Bacteria with a taste for Gluten the Missing Link
in the Pathogenesis of Celiac Disease? by Roy S. Jamron is excellent. I
believe you have hit on the biggest breakthrough with celiac disease and
gluten sensitivity...that being the role of bacteria.

This bacteria issue is something Ive become well familiar with in our search
for answers for myself, our daughter and a friend. In my case, Klebsiella
pneumonia and Helicobacter Pylori were present, in our daughters case and my
friends case, no pathogenic bacteria was found. But, in each of our
situations, we were lacking adequate amounts of friendly bacteria
(Bifidobacteria and lactobacillus). I believe this is the missing link.
Perhaps not the presence of a pathogenic bacteria, but simply the lack of
healthy bacteria. Each of us had been prescribed numerous antibiotics in the
past as well.

Thanks so much for the work you do. Great Job!

Grace and peace to you,

Bonnie Hafeman


Subject: Re: Free Food
Date: Wed, 1 Dec 2004 05:21:31 -0500

Scott,

In 1996/1997 I was dying. I was around 31 years old. I had gone bankrupt, could not hold jobs, and was close to destitute. I could only work two days a week and was living in a small one bedroom apt. I had accomplished nothing in my life that I wanted to, never had a girlfriend (sick all the time), and was starting to lose my eyesight from bleeding in the back of the eye. When I went to the toilet, and I did often, it was all water...and nothing was digested. My stomach grew out like the children in Africa who starve does.

I knew I would not last long. My goal was to get better so all I ate was healthy food. Lots of grains- wheat, rye, barley, etc- in soups and other ways...and I was failing. It was all I could do to work those two days to pay the bills as the rest of the time I spent in bed or near the bathroom.

I remembered my mother saying I was sick as a very young child (one or two?) and after many specialists they could find nothing wrong and I was dying. The Doc said try taking him off gluten for a few months and see. It worked, I did live. But I was never really healthy...and never near 100% in studies or attention.

As I lay there realizing I would be dying soon, I looked up gluten on AOL...and your site came up first. I saw the symptoms (a few of which were mine such as diarrhea, ADD, lethargy, and the like.) and I realized I was on to something.

The next eight years have seen vast improvements in some parts of my life. I am slowly getting at goals I have been yearning to do for decades (such as the website, originally a magazine). Unfortunately the test has been not bingeing and realizing the community is wrong. I am now in the midst of the 14th day free of ALL grains. Only fruits, vegetables, meat, and water have gone into me. I am feeling much better for the first time, though still run down. I cannot eat anything except basic food groups or I think I will never get away from the addiction, for addiction it is.

Although I am struggling now financially I am still healing and find I am able to work more than I was even 4 years ago..

If anyone needs to pay someone it is I paying you. As I said in a letter once, your site changed my life and I have spent many an hour talking to people to help change theirs too. All I can say is my political aspirations revolve around the truest sense of making the world better and helping all people. If I ever get to a state or federal level you will hopefully feel proud that you were part of it and any good that I can do while up there.

Thanks for everything.

Bob Hoffman

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KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust. By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,

I was at a used book sale yesterday and happened to see an old dermatological textbook. Of course the first thing I looked up was dh just to see what it had to say. What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line. The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember. Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back. Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this. That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.

Feeneyja, This will be a little long but I will try to be brief as possible. See this discussion thread that talks about how Pellagra is often diagnosed as other disease's today because doctor's rarely recognize it today in a clinical setting. Pellagra's is described as the 3 D's if you don't count the 4th D of death if it goes long enough and is not diagnosed in a timely manner. Dementia (Neurological) Digestive (GI problems), Dermatitis issues (Ezcema, Psorsias, Acne etc.) According to mdguidelines website http://www.mdguidelines.com/pellagra indicates that quoting ?The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations.? And why I believe in many cases Pellagra goes undiagnosed today. Because doctor's have forgotten how it presents. A longer researcher article about the neurological presentations of pellagra mention the many ways a Niacin deficiency can present itself. Here is the link https://www.hindawi.com/journals/cggr/2012/302875/ and I will quote some of the neurological/dementia related symptom's of an undiagnosed pellagra patient. "Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer?s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD. The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." It is me again. You can see the neurological symptom's of Pellagra are severe and wide ranging. Taking Niacinamide 3/day for 6 months can alleviate many of these symptom's if your daughter has subclinical pellagra and the doctor's don't know to look for it. I had deep depression for many, many years and I shudder to think now that only a Vitamin could of helped me 30+ years ago and the doctor's didn't know to look for it. Shoot it isn't just Niacin. All B-Vitamin's help your stress levels. IF you have stress B-Vitamins can help your stress levels. I take Folic Acid for Blood pressure problems and it keeps my BP with in a normal range. A article on celac.com discussed this topic in detail a few months ago. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I hope it is helpful. Good luck on your continued journey. If you have never heard of Pellagra you are not alone. Dr. Heaney discusses why this is so in his online article Pellagra and the 4 D's. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ If you don't have time to read the whole hindawi article I also suggest this shorter but informative blog about why a Niacin deficiency can cause dementia related conditions. https://pellagradisease.wordpress.com/ Then decide for yourself and your daughter's sake to decide whether to take Niacinamide or not to see if it helps the D's symptom's she is experiencing (Digestive, Dementia etc.) The International Journal of Celiac Disease makes note of this in their research that Pellagra could be contributing to symptom's being diagnosed as Celiac disease today instead of a possible (co-morbid) Pellagra that causes the same symptom's. When they discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting 3. Pellagra and celiac disease "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." If one is being diagnosed incorrectly the other co-morbid conditions can continue to cause Celiac like symptom's. But if the majority of those who have been diagnosed as Celiac could be helped by taking Niacinamide I see no you reason you shouldn't try it. Or at least research it some more. Again good luck on your continued journey. 2 Timothy 2: 7 ?Consider what I say; and the Lord give thee understanding in all things? this included. Posterboy by the grace of God,

Read this posted on the FDA.gov site: https://www.fda.gov/food/guidanceregulation/guidancedocumentsregulatoryinformation/allergens/ucm362880.htm

Color me confused. I went to Costco yesterday and there were 2 products there that had GLUTEN FREE plastered on the box but then in the ingredients was a: May contain wheat. How is this possible? How can they still put gluten-free on the box? We should be able to trust gluten-free labeling no?? And second question: How many of you would still buy that item? I REALLY wanted to buy the Island Way Sorbet for my daughter as it is her FAVE. But I didn't want to take the risk. Maybe when she is healthier? I mean it is SORBET?! LOL So frustrating!