mamabear
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Latest Celiac Disease News & Research:
Everything posted by mamabear
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ARCHIVED Diarrhea Question . . . Sorry!
mamabear replied to LisaJ's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Doubt this is the cause, but don't forget about licking envelopes!!!! And check and double check your spices..... -
ARCHIVED Help!
mamabear replied to lawmonkey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Another way to approach this is to wait ~3 weeks from the time you went back on gluten and retest the blood work. With your symptoms as they exist now, it would seem possible to get an antibody spike. If you are still negative, I'd agree with going gluten free and see if the symptoms don't resolve. Of course, I really don't argue with just going gluten free... -
There is an unofficial group that meets at Wild Oats in east Memphis . You can call them to get the meeting day and time. It is usually on a Monday night.
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ARCHIVED Hydrolyzed Vegtable Protein
mamabear replied to zachsmom's topic in Gluten-Free Foods, Products, Shopping & Medications
Please post it again. I know I could use a refresher course! -
ARCHIVED Headaches Persisting After Going Gluten-free
mamabear replied to jebus's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Great advice from Tiffany and Ursula. I also would suggest being sure you have enough protein in your diet to help keep blood sugars stable......too many carbs/sweets may send sugars up and down and precipitate headaches. I guess you have had a full neurological workup if the headaches have occurred for 10 years. Situations can change and you may need a neurologist... -
Please be sure and give an update after your visit to the GI doc. It will be interesting to see how he reacts to your improvement. Some of the GI's around here understand the negative biopsy after a gluten-free diet for several months is a GOOD thing!
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If you have celiac sprue, it is imperative you follow the gluten free diet in order to heal, but it unfortunately is no guarantee healing will occur. Fortunately that(refractory celiac disease) is the exception. Not sure what the latest statistics are. I think another benefit is decreasing your chances of having other autoimmune phenomena occur. I personally...
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ARCHIVED What Are The Best And I Mean The Best gluten-free Flours
mamabear replied to zachsmom's topic in Gluten-Free Recipes & Cooking Tips
Thanks from me,too, Patti........I haven't had a sugar cookie in 3 Christmases and I can't wait to try them! My kids have missed the annual cookie bake...we've done it, but I don't like to touch the wheat flour!! Puts a damper on their fun, so now we can have our favorite Christmas treats again. Any other suggestions or warnings as to the food dyes, sprinkles... -
I am so glad to hear you are getting some answers to your problems! Sounds like you may have gotten some docs to listen up and think outside the box,too. Good for you! Keep on getting well and please keep us informed.
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Many thanks to all for all the encouraging and kind words. I look forward to participating in this forum and continuing to accelerate my learning curve about celiac!
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Hi, Jestgar I found Gatorade helps; tonic water helps;multivitamins help;exercise helps........and I ,too, am fascinated by the spontaneous movements !! Calcium/magnesium/zinc tablets helped awhile, but they are twitching away right now!! However the Ca/Mg/Zn did help the severe charleyhorses I was getting. Sounds like you have a smart and compassionate...
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I think docs are reluctant to label a patient with a disease unless they have specific proof of the same. If you had no serologies or biopsy with which to diagnose, that's a different matter. Celiac is not as easy as diabetes when someone's fasting blood sugars are greater then 125. But if your blood sugar were 120,wouldn't you think you might have a problem...
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Did they do the full celiac panel of serologies on you? I have had patients that were first negative with the panel, then(by their choice) stayed on a regular diet, and when symptoms escalated, we retested. 4 of 6 patients retested showed antibody response. None of those had EMA or tTG. They were all celiacs by their symptoms and signs......refused biopsies...
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Wow......after reading this post, I would be satisfied with no biopsy and staying gluten free. Too many potential pitfalls for you with anesthesia.Unless they come up with an anesthetic you should be able to tolerate, I personally would not feel the need to get tissue diagnosis on you. There are researchers looking for even better specific/sensitive tests...
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Oh, I feel the same as your GI. And I would imagine he still wants a biopsy to prove it beyond doubt. The antibody testing can be as misleading as the biopsies, so it still makes it tough to decide to do as a patient...less tough for the docs ordering the test. Knowing as completely as you can know, only empowers you in the years to come. As far as I would...
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Lisa, Thanks for your insight! OK....here's a question for us. How many of you all have muscle twitches in your long muscles? Eye twitches are fairly common, but I'm talking about visible movement(fasciculations is the medical term)...rather looks like a gutted fish belly.......My legs(primarily my calves) have been twitching (mainly when I am lying down...
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ARCHIVED Celiac And Ferritin Levels
mamabear replied to mamazoocrew's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
You may already have your answer to your condition, but celiac can certainly show low ferritin and no overt anemia. My ferritin levels were dropping with no blood in the stools and had not reached anemia ,technically speaking. Mine was that way, and a biopsy showed celiac sprue with villous blunting .The GI said the duodenum looked normal, but the microscope... -
It is the "Gastroenterology" journal...Nov.4 ,2006. It is only available as a subscription yearly, and that is $$$$$. This is the official journal of the American Gastroenterology Association. I am going to try and get a copy from my own GI. His office is close to mine. Thank you for your kind words and I AM getting a LOT from being here! I like the company...
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Maybe I wasn't very clear about this particular instance. I think that following the diet for this child is very important. I was worried about directly challenging him with gluten in order to repeat his testing. I believe that will occur inadvertently anyway, and repeat testing...as far as a small bowel biopsy...can be done later. Sometimes there is a positive...
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I have no doubt in my mind that the biopsies can miss the diagnosis. I have a patient whose duodenal biopsies were negative, but was found to have the typical photographic abnormalities found on capsule endoscopy by the same GI doc. I sent her back to him when she continued to lose weight and have diarrhea in spite of being gluten free. It turns out she was...
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I sure wish I had an answer for you. I can imagine how frustrated you must be. The new studies ordered for this coming week may shed some light. A culture from your sinuses would help. As to whether eradication of systemic fungal infection would stop the gluten intolerance, I have no clue. Maybe the other message board will have someone who has dealt with...
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I am very reluctant to gluten challenge a patient who has clinically improved on a gluten-free diet. However, if it is a child or young adult who will be looking at a lifetime of dietary change, I like to see a biopsy to confirm it. We all know biopsies can miss a celiac diagnosis, as can the blood tests, so it makes it very difficult to always be sure ....
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Beautiful response for insurance companies!! I would like to think they have a collective conscience, but the only place you can reach them is the bottom line. Making them see how they may save $$$ might work. I'll check back to try and get the letter.
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Sorry I can't give specific advice, but there are definitely neurologic symptoms of sprue as well as associated neurological conditions. I am not sure how to figure in all your fever with any direct celiac cause. I would hope you have a neurologist,infectious disease specialist,rheumatologist, internist and ear/nose /throat guy... You have a complex array...
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Lisa, Most of the doctors who had graduated or done their residencies before the landmark study in 2002 from the European doctors have no clue this is also an adult disease. That is probably 90%+ of all practicing physicians. When I was diagnosed, I was incredulous that I had sprue. Having initially trained in Pediatrics, I was familiar with celiac sprue...