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This comes from the work of Dr. Carl C. Pfeiffer Ph.D., M.D. I edited my post, indicating this is what my primary care MD told me. I apologize. Here is a link to a discussion, but this is not where I got my information:
I just came across this thread, which has been going a long time. I have the problem, too, and it's obviously hereditary, in both my parents and their relatives. Some of you have not gotten any relief from the gluten-free diet. I get the anger when glutened, but for me, there is something else that keeps it going longer, and causes the problem by itself. My doctor is an MD practicing for many years, who is a nutritionist, who has been gluten-free for more than 20 years. This is what my doctor told me, and diagnosed me with: I have pyroluria, an inability to convert typical dietary and supplementary vitamin B6 (pyroxidine HCL) to the usable form of B6 (pyroxidol 5'-phosphate), which is a necessary enzyme in the utilization of the vitamins and minerals that a celiac typically is deficient in. So, I got a double whammy of malnutrition. My doctor's prescription for P5P and zinc citrate worked for me.
I have had a gluten-like reaction with chicken, but not all chicken. I have been told that any liquid that is injected into chicken would be broth containing gluten. So try some expensive fresh organic chicken. The cheep frozen chicken is likely to be injected with broth.
If you have casein intolerance, like I do, you just have to avoid it like gluten. It's a different issue from lactose intolerance, and the pills won't help. There can be many different causes of joint pain, including arthritis. Other autoimmune diseases are associated with celiac. Other food sensitivities can be involved. I do suggest testing for additional food sensitivities, if you can.
Gluten, or any food for that matter, does not necessarily get digested and metabolized before entering the blood stream. That is only what is supposed to happen. I have been shown partially digested fragments of food in my blood, under a microscope. That's from a leaky gut, with a lot of damage. People can have a leaky gut from other things, like a medication, I've been told. I've also been told, by a doctor addressing a local Gluten Intolerance Group meeting, that people don't fully digest wheat, barley, rye or oats, because some of the proteins are just too large and complex. It only takes a small fraction of a gluten molecule to cause a celiac reaction. There are multiple short chain peptides of gliadin, sequences of only 4 or 5 amino acids that can cause a reaction. There are multiple instances of each of these several peptides in one gliadin molecule. Partial digestion can make these peptides more available for our immune system to react to.
I can really relate to being sick and tired of being sick and tired. A former coworker even wrote, sang and recorded a song about that for me. You are on the right track with all of this: the leaky gut, the candidiasis, the scd, the tests you want. I knew I had the leaky gut and candidiasis before I heard of gluten. Listen to your body.
I spent thousands of dollars on tests, out of my own pocket, and they all helped, especially the really expensive food intolerance one. It is hard to find one with as many intolerances as me. Generally, the older you are at celiac diagnosis, the more food intolerances you are likely to develop from leaky gut, but I know one woman who is much younger than I who had more. Most of my food intolerances cause myalgia for 5 days or more, starting within 2 to 12 hours after eating them. These run the gamut of foods, but are every category of related food allergies I've heard of, like nightshades, and I've recently understood that I can't handle any cruciferous vegetables. I had to eliminate all herbs except oregano.
Obviously you can't afford all these tests, and they won't be covered. I have heard that 66% of celiacs are self-diagnosed. It's no wonder, with how sick we get and how unhelpful most doctors and health insurance is.
I was very happy with my enterolab testing, which I did a month after going gluten-free, including stool for antibodies to gliadin and tTG, fecal fat content, casein intolerance, and gene test. My doctor, an MD with more than 20 years of experience with gluten issues, diagnosed me based on the results. But I had my doubts after a couple of months of being gluten-free, until I got glutened in a restaurant, and got sicker than ever. Like Dr. Fine says, that is the best test.
I just had a positive blood panel, 4.5 years after diagnosis. I only eat meals I prepare from scratch from whole foods, and a few (right around 3 that I stick to) prepared foods, don't go into restaurants, and eat small samples of food prepared by a very experienced and knowledgable celiac chef every few months at a support group cooking class. But I was gluten symptomatic when I had the blood drawn. My doctor told me about a case where a patient of hers had a negative blood test, then had a positive one after being gluten-free for a year. The so called truths about testing for celiac are not true for everyone. It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.
Erikamarie, do you think you have the gluten successfully eliminated? How long has it been since you think you got contamination? Do you live with gluten consumers?
Yes, Echen, I have celiac, and this is one of my worst symptoms. After going gluten-free, from 2 weeks to 6 weeks I had a honeymoon period, where I did not have to go to my chiropractor. Then, due to a leaky gut and developing a lot of other food intolerances, the pain came back. I had it under control with a lot of foods eliminated, then after 4 years, the pain got worse, and I had to do some muscle testing and eliminate some foods I had been eating every day for years. I have been getting almost 5 hours of massage a week for the first few months of this year. Exercise and exertion makes it necessary. If I get gluten contamination, the pain is a lot worse than with other foods, but it has been a few years since I had that.
What do you mean you have no ideas? You have plenty, and I can give you more. I'm extremely limited, due to my leaky gut.
I can't do nightshades.
I kept getting more sensitive, and I do get hit by fumes - symptoms are not as bad nor last as long - it affects me gastrointestinally and neurologically for 1 and a half to 3 months, whereas cc will affect me for 6 months, which accidental wholesale ingestion does as well, but is horrendously disabling.
The only things I can eat, that you ate that day, or thought about, are the swiss chard and eggs, and coconut bliss.
I don't suppose you can afford hundreds of dollars for a 200 food sensitivity test? I had to do that.
I get sick from skin and air contact. But, you said you did not get the usual gluten neuro symptoms. Is the pain just abdominal, or is all over your body? Because most of the non-gluten, non-dairy things just give me fibromyalgia muscle/fascial pain, except things like rice and avacado. Lara bars got to really hammering me, due to the dates.
Sorry about the misfire, folks. I'm a little ADD and my computer and connection are too slow.
I must disagree with both of these statements.
I caution anyone with possible celiac disease who has been gluten free for 2 months, especially those who have been gluten-free for 6 months, against gluten challenges. Your immune system will likely be hair trigger, greatly more able to respond more powerfully, and very angry. You can easily get a new autoimmune disease very quickly, and you may not be able to recover from it. This means you could permanently lose the functioning of an organ, or take many years to recover only partially. This means that the most likely organs to be the next target of your immune system are your brain or your endocrine system. I'm speaking from my own experience, as well as from listening to a gluten intolerant doctor who has written for celiac.com, who has more than 20 years of clinical experience specializing in gluten intolerance, and my own primary care MD, who has the same length of experience specializing in gluten intolerance, and who has it herself, as well as 4 years of thousands of email correspondences with thousands of other celiacs on another forum.
I also disagree that losing strength can be easily fixed. I have always loved bicycling, and fantasized about bicycle racing in the olympics as a 5 year old. I never competed, but became an aggressive amateur. I was diagnosed with celiac 4.5 years ago. As I stated on the second thread on this forum, if I push it or cycle more than 1 hour and 15 minutes, I can be wiped out and unable to do much for 1 to 3 days. I had a Great Plains Labs organic acids urine test, and one of their recommendations was alpha ketoglutarate. I take L-Arginine Alpha KetoGlutarate an hour before bicycling, then a large shake before riding, and I can get away with pushing it a little for an hour and 10 minutes, but still cannot handle bicycling for 2 days in a row. Apparently I have an impaired krebbs cycle (getting energy into cells). In 2010, I was up to riding 5 days a week again. However, last year I did not do so well, and ended by only cycling 1 or 2 days a week. Live blood cell analysis this year revealed a huge red blood cell oxidation problem, in addition to the hemolytic anemia which I have been aware of for 14 years, which is continuing to abate. My doctor spent 4 hours writing an email to me regarding mitochondrial energy problem help, in which she recommended 11 new supplements, some of which I have not gotten yet, due to verifying gluten-free status. I don't consider this easy.
OK, more dedicated gluten-free restaurants, which I have not been to,
in Colorado there is Coquettes Bistro and Bakery:
in Massachusetts there is Idgy's:
Get out and support these places, or they will be gone, like the others.
Thanks for the links, organization is not my forte.
As for totally gluten free restaurants, the ones I have been to probably don't compare to Sherry Lynn's.
In the Chicago area, there are:
Rose's Wheatfree Bakery and Cafe http://www.rosesbakery.com/contactus.asp
OMG It's Gluten Free Bakery and Cafe http://omgitsglutenfree.com/
In the future, there will be Senza: http://blog.senzachicago.com/, being established by the widow of the owner of Fatoush, which was sold.
Apparently the Great Taste Cafe closed, as have several other dedicated gluten-free restaurants around the country. Dedicated gluten-free Bakeries do better, such as Sweet Ali's www.sweetalis.com.