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View Poll Results: How were you diagnosed with GS/CD, and what has been the outcome of gluten exclusion?
Biopsy - no symptoms with gluten-free diet 4 57.14%
Biopsy - still symptoms with gluten-free diet 1 14.29%
Anti-EMA or Anti-ttg - no symptoms with gluten-free diet 0 0%
Anti-EMA or Anti-ttg - still symptoms with gluten-free diet 0 0%
Anti-gliadin - no symptoms with gluten-free diet 1 14.29%
Anti-gliadin - still symptoms with gluten-free diet 1 14.29%
Voters: 7. You may not vote on this poll

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  #21  
Old 10-11-2006, 07:08 PM
klasyjo klasyjo is offline
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I selected biopsy w/no symptoms but I still occasionally have symptoms mostly because of accidential consumption of gluten or from other complications I have.
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Becki

Hashimotos, Ehlers-Danlos Syndrome Hyper-mobility Type III, Osteoarthritis C5-6-7 L4-5 S1 w/slight narrowing of disk space, Pre-Osteopenia in both hips, Herniated Disks T8-9, Cervical Lordosis, Sciatica, Facet Arthropathy, Sinus Polyps, Lymphadenopathy, Migraines, Spina Bifida Occulta and Celiac Spru
Vitamin deficiencies B1, B6, Carnitine and Magnesium
Allergies: Morphine, Demerol, Darvocet, Vikadon, Ultram/Tramadol, Sulfate, Duragestic
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  #22  
Old 10-11-2006, 07:56 PM
diamondheart diamondheart is offline
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Quote:
Originally Posted by DrRoss View Post
Ate half a loaf of whole wheat bread today. No effect so far...
It can take 24 to 48 hours for me to see an effect.

What are your usual symptoms? I get GI symptoms as well as other not so obvious ones, like depression, brain fog, and fatique. Now that I know what to look for, my arthritis flares up in my neck too.

Claire
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  #23  
Old 10-14-2006, 08:35 AM
OZZ OZZ is offline
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DrRoss.

Well, I guess so far I am the only biopsy proven Celiac still with symptoms. But, how many might be biopsy proven if they examined the whole intestine? How many had negative biopsies because their uninformed gastro only took 2 pieces to examine?

Frankly, my biopsy positive was not total atrophy like they claim it should be with a positive EMA...so where was my damage??? Probably further down. Or better yet, further up...in my brain somewhere which is why I had so many neurological problems.

I agree that 6 months is not enough time to see any results. It took me 15 months and I am just realizing some amazing results.

My gastro said I would feel better in a few weeks and he also told me I didn't need my Vitamin D tested! He is even written up in one of the best Celiac doctors in the area...this is really scary! When I went to see this doctor, I had only read for a month or so and knew more than he did (about Celiac that is)...except how to do a biopsy..LOL...but give me a little more time and maybe I could do that better too... ....At least I would know to take more than 2 biopsies!

DrRoss are you testing your AGA's and tTG's after 6 months to see if the levels are dropping? Did you say what your tTG's were? Some doctors think that if you have tTG's in the blood that you have the early stages of Celiac if they are not positive.

My husband was also diagnosed with positive AGA's and what we consider a positive tTG since it was an 18 out of 20 and he was on an almost gluten free diet for about 6 months. He is going thru the same motions as me and my daughter.

First you notice an improvement, next you feel worse and finally you really start healing and can actually say you feel better. He has been going thru the feeling worse stage although he notices some improvement. For awhile he was like you saying he couldn't possibly have this since his symptoms were so different, but after getting accidentally glutened and becoming so ill, he knows he has Celiac Disease and is starting to believe this is what his father died of at a young age of 73.

Have you read any of DogtorJ's info. I really find his thoughts fascinating. I will find his link and post if for you.

Last edited by OZZ; 10-16-2006 at 07:28 AM.
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  #24  
Old 10-15-2006, 08:37 PM
DrRoss DrRoss is offline
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6 days now on an unrestricted diet and no change in how I feel. I ordered the Enterolab tests to see how those turn out, but given my history and the fact that my only positive test was IgG AGA and non-response to gluten exclusion/reintroduction, I suspect I have IBS. I'll post my Enterolab results (antibodies and HLA) when I get them.
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  #25  
Old 10-15-2006, 11:22 PM
Raechel Raechel is offline
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Dr. Ross, Since you have been gluten-free for so long, it probably won't do any good to run the "other" Celiac test: Reticulin antibody. Though it should have been done.

Not knowing your medical history, it's hard to give any meaningful advice. Have you tried acidophilus? Are there any drugs or supplements you may be on that adversely affect your GI tract? Have you been tested for parasites, etc.? Have you had a colonoscopy or endoscopy? Has anyone tested your stomach for your pH level (meaning, do you know if you lack stomach acid which can lead to similar problems)?

Are you a "real" doctor? Just curious.

If you have had long-standing celiac disease, chances are that healing will take a long time; therefore, symptoms may last a long time.

I would disagree with you . . . I believe celiac disease is WAY underdiagnosed. I was lucky to have a GI doctor who knows a lot about it, did ALL the antibody tests and several biopsies.

I hope you get the answers you are looking for.

Raechel
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  #26  
Old 10-16-2006, 12:01 AM
diamondheart diamondheart is offline
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Quote:
Originally Posted by DrRoss View Post
6 days now on an unrestricted diet and no change in how I feel. I ordered the Enterolab tests to see how those turn out, but given my history and the fact that my only positive test was IgG AGA and non-response to gluten exclusion/reintroduction, I suspect I have IBS. I'll post my Enterolab results (antibodies and HLA) when I get them.
Hi DrR,

Does no change in how you feel mean that you are still getting symptoms that you had before you went gluten-free? I did the Enterolab tests 7 months after I was gluten and dairy free, and everything was negative, not surprisingly. I don't know how long you have to do a gluten challenge to see antibodies show up. You might want to ask the folks at Enterolab so you get the most out of your testing and your money!! My gene tests were the most interesting thing, and I have two double copies of the gluten sensitive gene.

I recently found out that I have bacterial dybiosis, which is a fancy way of saying my good bacteria and bad bacteria are out of balance. I also had SIgA run (secretory IgA) and I was <69. Normal is at least 400, so that means my immune system has been fighting this thing for a long time. I think sometimes it's a chicken and egg thing. Which came first; the bacterial dybiosis or the food intolerances? Regardless, I need to cut out the things I'm reacting to for now until my gut gets better.

I hope the fact that you are not having symptoms (or are you? not sure from your previous posts) that your gut is healing. I'll be interested to hear your Enterolab results.

Claire
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  #27  
Old 10-16-2006, 12:36 AM
Zonulin Zonulin is offline
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Hi - I was WorriedMom on the "old" Braintalk, and am finally registering under a "new" name (sorry, Dr. Fasano). That was some hiatus!! (Or was it a sabbatical?) My son began feeling constantly nauseated, with vomiting and weight loss when he was 9. It took us over two years and 22 doctors (including a trip to the Mayo Clinic in Minnesota) to get a handle on what was causing it. No "flattened villi" was found upon endoscopy, but he did have Antigliadin IgG antibodies (69, with the range up to 20). He is also IgA deficient, which skews the celiac marker testing and affects the mucosal membranes. In addition, they found H. pylori (a bacterium which lives in the lining of the stomach and ultimately causes stomach cancer, which runs in our family), and a lack of the neurotransmitter acetylcholine, which helps in the release of digestive enzymes. The Mayo gastro recommended he take Mestinon, which helps the body hang onto the acetylcholine, but Mestinon can cause NAUSEA. So, with the approval of our local gastro, he takes digestive enzymes. He also takes a probiotic and things like calcium supplements, since dairy can make him sick. He is now 12 - still very thin but full of energy and so happy to NOT feel horrible anymore!!! Note: we made many trips to the emergency room when Ted was a baby and toddler due to his projectile vomiting and diarrhea. He never DID have a formed stool. He was hospitalized due to severe dehydration a number of times. Always the doctors scratched their...heads and told us, "...must be some kind of virus." Now we know he was probably reacting to the gluten in breastmilk or, as he grew older, to other foods containing gluten.

Here's some data from Digestive Wellness by Elizabeth Lipski re GI symptoms and dairy:

"Some people have celiac disease without symptoms, while others can be very ill. Symptoms are characterized by recurring attacks of diarrhea or constipation. abdominal cramping, gas, weakness, and steatorrhea (gray or tan fatty stools). Less common symptoms are arthritis, fatigue, brain-fog, bone pain, schizophrenia, fibromyalgia, depression, and epilepsy...anemia is common in people with celiac disease...Other long-term consequences of celiac disease can be diminished calcium reserves and poor fat-soluble vitamin status, which includes vitamins A, D, E, and K. About half of all people with celiac disease are also lactose intolerant at the time of their diagnosis. Lactase, the enzyme required to split lactose, is manufactured at the tips of the villi. Because these villi are damaged in people with untreated celiac disease, their bodies can't manufacture the lactase. Once people have gone onto a gluten-free diet and the intestinal lining is repaired, a few will be able to tolerate dairy products. Remember that about 70 percent of us are lactose intolerant, so many people with controlled celiac disease will still be affected by dairy products."

Karen
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  #28  
Old 10-16-2006, 08:39 AM
pakisa100 pakisa100 is offline
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Because you say that you think you have IBS, I am assuming that your 'symptoms' never went away.

This leads me to believe that you were either being accidentally glutened or that your diet needed to be more strict than 'just gf' in order to heal.

We needed to remove many things from our diet to heal properly... and everyone knows, the older you are, the longer the time to heal damage. Even my 3 year old son was still having issues (*d* whenever he ate certain foods like tomatoes, etc.) . Once we removed all skins and seeds, cooked all foods for the first while and removed all other reactive foods by doing a strict elimination diet (starting with soup broth only and then adding things back slowly).... after a year, his diet (ds was our biggest reactor) expanded further than it had ever been (without the following result of *d).

I suspect you have other foods that needed to be removed in order to heal. This has been documented in scientific studies... esp. of children but of course would apply to adults. I remember them specifically because one little girl had to take chicken out of her diet, which I thought was extremely odd. Nevertheless, the conclusion said that she was successful.

HTH
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