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From:
Vidalia Patterson <[log in to unmask]>
Reply To:
Vidalia Patterson <[log in to unmask]>
Date:
Wed, 21 Mar 2007 12:13:22 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

As always, thanks to all those who responded and offered words of encouragement and support.  You all are wonderful and I and my friend truly appreciate it.  I'm still waiting to hear from him, so I promise to follow up with any results on his condition!!
   
  -Vidalia
   
  My orginal post:
   
  A good friend and co-worker has been out of work for the past month and confided in me yesterday that he was having terrible gastronomic problems-- gas, abdominal pain, diarrhea, weight loss-- but the doctors cannot determine what he has. Of course, I immediately thought of celiac disease as these were the precise symptoms my husband had shortly before his CD diagnosis.
  
  My friend tells me that his doctors have performed every test out there, including those looking for CD (upper and lower GI series with biopsies of the small intestine and blood tests). They have also ruled out cancer, Crohn's, etc. He's had a CT, ultrasound, and other diagnostic tests which have shown nothing. Currently, he's awaiting approval for hospitalization. The doctors are baffled and have given him the ever-vague "irritable bowel syndrome" diagnosis that so many people get when the doctors can't figure out what's wrong with them.
  
  Here's his deal: He was diagnosed with diabetes in August of 2006 (which he has managed to control with meds and diet). Around that time, he began to have abdominal problems. Over the past two months, his abdominal pain has increased to at least a 5-7 on the pain scale (he lives with chronic joint pain, so he believes this is a conservative estimate), and he feels this way all day long, every day to the point of his being unable to sleep at night.
  
  They have placed him on the following diets, to no avail: dairy-free, low protein, low carb, no carb, gluten-free (although he admits that he just cut out the obvious stuff and didn't look for "hidden" gluten).
  My questions: has anyone experienced this sort of thing where the tests for CD come back negative only to be diagnosed later? Should he try a strict GF diet, just in case? (I mean, what has he got to lose, right?) Are there any complications arising from diabetes that could produce these symptoms?
   
  I have included tallies on the more common responses to my questions.  If more than one person offered it, the number of responders will be in parentheses.  After these are individual responses that don't fit into the tallies.
   
  Those who (or knew of someone who) had tested negatively, but still had celiac symptoms and/or reacted well to the GF diet. (9)
   
  Many people recommended going on a true gluten-free diet (which I have already encouraged him to do). (10)
   
  In reference to his diabetes, some folks mentioned gastroparesis- a gastric condition associated with uncontrolled diabetes.(3)
   
  Others suggested it could be his reacting to cottonseed oil, corn, soy, sugar alcohols, metformin or Glucophage (Diabetic meds), or having mercury poisoning. 
   
  Other possible diagnoses include diverticulitis, pancreas insufficiency, lyme disease, Epstein-Barr, hyperthyroidism, eosinophilia of the digestive tract or an eosinophilic disorder. 
   
  A number of you recommended getting a stool or genetic test done via Enterolab/Dr. Fine:(6)
  Some said he should get a second opinion and make sure that the tests he received were done properly (blood work and the biopsies taken).(3)
   
  Individual comments:
   
  
  I don't know if this might help but someone just gave me a very good, comprehensive newspaper article from "Life Times" March 2007 (I hadn't heard of it but it seems to be an Illinois paper) in which Dr. Stefano Guandalini founder of the U of Chicago Celiac Disease Program (www.celiacdisease.net; www.uchospitals.edu/Specialties/celiac, then click on "fact sheets", then "symptoms") is frequently quoted. 
  In one paragraph, halfway through the article, he says "The doctor should specifically request a test called the anti-tissue transglutaminase antibody (tTG) test and a test of total serum IgA. A doctor's using the words "celiac panel tests" may result in older, less specific tests being administered."
  I am familiar with all these terms but the above paragraph jumped out at me because all these years I think I have thought that requesting "celiac panel tests" assured getting the tTG and the total serum IgA, and they are clearly not! 
  Thus, if, perchance, your friend's Dr. requested just the "celiac panel tests", it may not have been specific enough and he could/should now have the tTG and the total serum IgA tests done.
  *******************************************************
  The SCDiet heals/cures/arrests ALL gastro problems (whatever the name) if you are devout
  enough to follow it 100%. Read our family story at
  http://www.austinscdfriends.com/page/page/3689765.htm  (EMAIL ME IF YOU WANT MORE INFO ON THIS)
   
  *******************************************************
  Gastroparesis is nerve damage to the stomach that can cause pain. and other symptoms. 
  http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/index.htm 
  
  In gastroparesis digestion is slowed down. Gluten can cause problems with moving food through the digestive system. 
  
  Gastrointestinal motility disturbances in celiac disease
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15319644&query_hl=2&itool=pubmed_docsum
  
  Gastric emptying of realistic meals with and without gluten in patients with coeliac disease. Effect of jejunal mucosal recovery
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=11589376&query_hl=10&itool=pubmed_docsum
  
  Gastric emptying of solids is delayed in celiac disease and normalizes after gluten withdrawal.
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10976830&query_hl=10&itool=pubmed_docsum
  ********************************************************
  I can't offer any miracle cure, but tell him to eat wild blueberries every day. He probably should cook the berries to prevent bacterial contamination, sounds like his gut is really sensitive...it may help, it helped one man have a solid stool..he was in the hospital and thought he was going to die. Trader Joe's has organic wild blueberries. Wild blueberries are more beneficial than the larger berries. 
  ******************************************************
  The celiac experts say the antigliadin antibody tests (IgA and IgG) are outdated; too many false positives and false negatives. However, those were the original screening tests for celiac, and the tests many doctors would still be using.
  The IgA Endomysial Antibody test (EMA) is the best; virtually 100% specific for celiac. However it is expensive, as each one must be assessed by a lab technician (the others are automated). Doctors, under pressure to keep costs down, may be reluctant to order the most 
  expensive screening test, especially if they still think of celiac as a very rare disease and an unlikely diagnosis. As for negative results on the IgA EMA, I quote from Dr. Peter Green's book, "Celiac Disease": "Unfortunately, there may be a stage when the IgA EMA tests is negative in a patient, only to appear and test positively two or three years later. This is often seen in clinical practice. These people probably had celiac disease but were not diagnosed because those antibodies were negative....often it is necessary to retest if patients' symptoms continue."
  The experts are very picky about which labs to use. Here's Green's list:
  IMMCO Diagnostics
  Prometheus Laboratories
  Specialty Laboratories
  Each of those has a website. Biopsies need to be done by someone who knows exactly where to look. Several samples must be taken. Villi damage is often patchy, so it is entirely possible to have intestinal damage and a negative biopsy because the samples were taken from healthy spots.
  ****************************************************
  I would also recommend the book "Dangerous Grains" He needs to read up on this himself & forget the doctors, bless them, but most of them are clueless. Send him to Celiac.com to post questions of the message boards there & to read those threads.
  ****************************************************
  Go to a health food store and get him the homeopathic remedy Veratrum Alb 30c..he is to take 2 pills under the tongue after each bowel movement or cramp or any gluten symptom. To build up the gut and stop the reactions, he should take with each meal one probiotics complex and one l-glutamine...these heal the gut and stops the symptoms. The gut should heal in three or four months but he will start to feel better in a few days. FYI...a gf diet is now prescribed for ibs. In any event, it won't hurt
  *************************************************
  Check www.glutensensitivity.net It discusses non celiac gluten reactivity in detail. 
  Also think about GMO foods. They appear to be "wild cards". Seeds of Deception by Jeffrey Smith and his new book Genetic Roulette which is a compiiation of the research are sources of info.
  Also consider the toxins...MSG, aspartame, and so many others.
  We are all eating the wrong fats. We need to cut out transfats and processed seed oils and do more fish oils, olive oil and healthy saturated fats like virgin coconut oil, butter, cream, and animal fat from PASTURED GRASS FED animals. A change like that needs to be done gradually so the gall bladder doesn't object, but for someone who is ill, the fats are surely a place where overhaul is needed. 
  Then there are the refined sugars and yeast/mold/fungi overgrowth that go with high sugar diets.
  ***********************************************
  There is a lot of evidence regarding gluten sensitivity and that very small amounts can cause all the symptoms you described and even more that don't look like CD. It can't hurt to go strictly GF and really watch for hidden gluten sources. The Europeans are much progressive, I have worked with a Dr from New Zealand and he feels that 1 in 10 are gluten sensitive ( you can find out if his 
  IGg is out of control, any number above 29 would be cause for alarm) His website is www.DRGLUTEN.com

 
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