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Chaff added a topic in Super Sensitive Celiacs & Gluten SensitiveQuestion: Sudden Dizziness, Possible Trace Exposure From Goya Beans?Hi Folks,
I've been gluten-free since Nov 2011 (when I was diagnosed after testing) and lately discovered that a lot of my lingering digestive issues seem to be connected to the small amounts of dairy I was eating (butter, hard cheese, the occasional yogurt). Since I couldn't handle most foods, I'm excited to finally start to expand my diet now. I'm underweight, but the dairy kept my bloated and without an appetite. Now I'm hungry all the time!
I need whole grains of some kind because my high iron gives me blood sugar issues from simple carbs, but as you know, whole grains are often contaminated (and I react to gluten-free oats, probably from the avenin, which some celiacs are sensitive to). Goya's website claims their blue-label beans are gluten-free (though mysteriously they don't make the same claim for their dry beans), although About.com's Jane Anderson is pretty adamant that gluten-free beans from anything but small farmers is a myth.
Anyway, I tried the Goya black beans for a few weeks. It's a fantastic addition to my diet, like, I finally have hope of gaining weight without having blood sugar spikes, maybe even can think of travelling. But...now I routinely wake up late, feeling clumsy, dizzy and stupid for a few hours in the morning. Folks elsewhere on this site seem to do OK with Goya beans, so I'm wondering if I'm crazy and imagining things or what.
I've ordered some Eden Foods certified gluten-free canned beans and some EZ Gluten tests, but these will take 1-2 months to get to me, because I'm living overseas on a US base. So I'm checking to see if you all have any thoughts on this in the meantime. Apart from the beans, I'm just eating my usual diet of whole foods that I prepare myself. My kitchen is shared and contaminated, but I have my own area and equipment, and keep my stuff clean and apart.
Any experience with these beans, or thoughts on whether this could be a gluten thing?
Celiac.com Forums: http://www.celiac.com/gluten-free/topic/102175-goya-canned-beans/
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Chaff added a topic in Other Food Intolerance and Leaky Gut IssuesFructose Intolerances -- What Does The Medical Literature Say?Kareng brought up a good point on a different post -- what exactly does the medical literature say about problems eating fructose for people diagnosed with celiac? Some of us have it, but most don't. Is it a leaky gut thing? Is it a different genetic condition? Is there even a third factor that I can't think of right now that might be causing it?
The question spurred me on to better PubMed keyword searching. I think I ID'd some of the key stuff. It's sparse, though, and a lot of it offers no evidence, but just states it as current medical doctrine. Perhaps I can't find better stuff because I don't have a PubMed subscription and lack basic literacy in reading medical studies? I knew I should have taken BioChem in college, but noooo, I wanted to learn Italian.
Anyway, if anyone thinks they may have a severe issue with fructose, please PM me and I can talk with you offline about the fructose stuff, which has a good body of research behind it and a nice group of folks online who can answer questions on it. There's dietary (DFI or fructose malabsorption) and HFI (the scary one that's genetic and causes liver damage). They're basically analgamous to gluten intolerance vs celiac -- both suck but one's proven to be genetic and is more restrictive.
Here's the stuff connecting them that I could find:
Etiology of nonresponsive celiac disease: results of a systematic approach.
"Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue."
The prevalence and causes of chronic diarrhea in patients with celiac sprue treated with a gluten-free diet.
"The causes of diarrhea in 11 patients consenting to this study were microscopic colitis, steatorrhea secondary to exocrine pancreatic insufficiency, dietary lactose or fructose malabsorption, anal sphincter dysfunction causing fecal incontinence, and the irritable bowel syndrome."
Celiac (NIH "Gene Review")
"Consultation with an expert dietician to analyze the diet for hidden sources of gluten and to evaluate for lactose or fructose intolerance, which can contribute to poor clinical response to a gluten-free diet...•Assessment for lactose or fructose intolerance is important because these conditions can be responsible for lack of response to the gluten-free diet [Green & Jabri 2003]."
The Green & Jabri reference is here, but the abstract doesn't help: 30.Green PH, Jabri B. Coeliac disease. Lancet. 2003;362:383–91. [PubMed: 12907013] (http://www.ncbi.nlm.nih.gov/pubmed/12907013)
And two interesting studies (one just a case study) on cooexisting celiac and hereditary fructose intolerance. Yikes! I had thought this was too crazy a hypothesis to be really that likely for me, but it's apparently within the realm of possibilities:
Non responsive celiac disease due to coexisting hereditary fructose intolerance
"An association between these two distinct genetic gastrointestinal disorders is important as treatment failure of celiac disease calls for careful evaluation for hereditary fructose intolerance"
And from the flip side --
Hereditary fructose intolerance and celiac disease: a novel genetic association
"The possibility of an association between these 2 gastrointestinal disorders is important, particularly in the management of HFI patients with persisting symptoms."
Anyone have better research on this than I could find?
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Chaff added a blog entry in ThesmophoriaHemochromatosis + Fructose-Free, Gluten-Free Diet = Fun TimesI'm a 35-year-old woman with hereditary hemochromatosis. I'm supposed to have zero problems til menopause, but in my 20s I had severe iron overload.
After the bloodlettings, things went along OK. But now I'm diagnosed celiac and gluten-free...and my celiac anemia tendencies are removed, allowing the iron free rein in my system. It's running in my system like toddlers after cake.
So I feel like crap. Yay. Thanks, genes.
BUT I also have crazy high blood sugar after eating. This is an Easter egg for iron overload. And since all fructose causes bad things to happen for me (extreme leaky gut issue or hereditary fructose intolerance? Hopefully I'll get some answers soon.) I have to eat only white rice, safe fats, and lean meat/fish.
So, basically, a starch-rich diet with tons of iron. Yay once again. Ooh, or mercury, since I hate all seafood but tuna.
Did I mention I'm dangerously underweight? And I lost even more when I stupidly tried the SCD thinking this was all just SIBO. I'm up to 99 lbs (I'm 5'2") but I can't both control my blood sugar spikes AND eat enough extra calories to gain weight. Since I feel awful when my blood sugar's above 130, guess which one wins out.
Ironically, if I was my proper weight I could just saunter over to a blood bank and shed the excess iron. But with my current condition I'd just do what I always do when someone tries to take a full bag of my blood--pass out. No thanks.
Am I complaining? No, I'm blogging. Complaining would be explaining to my coworkers exactly why I can't eat the constant snacks in the kitchen, in meticulous, medical detail.
Hells bells, this is a crazy runaround of intestinal delights. Looks like I'll have lots to talk about at Mayo next month.
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