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Ed in Baja's Activity
Ed in Baja added a topic in Gluten-Free Foods, Products, Shopping & MedicationsXantham Gum-Bobs RedmillI have been using more gluten free products lately with Xanthum gum. Initially I found it a little weird. A little bit of stomach rumbling, etc. and a kitchen spill was interesting and alarming...its was impossible to clean up, especially after hitting spilled water on the counter and floor. After using a rag, windex, cleanser, and scrubbing to no avail, creating a sticky,slimy mess, I had to ask myself, what happens when I eat this stuff?
So I did some research:
Animal studies at high doses have not indicated pathology in low duration studies, e.g. Three mouse generations.
Human studies are few.
Those that exist find XGcuases and increase in short chain fatty acids in the gut.
The powder is made from a bacteria that is grown on a substrate of wheat, corn, or soy. Industrial production has largely shifted to a wheat base, as in Bob's Redmill products, which claim to be gluten free.
I could not find data regarding the survival of any gluten in the refined product. I DO NOT WANT TO SPEAK POORLY OF THIS COMPANY. They have been a reliable and innovative leader in the gluten-free industry. I have had NO problems with Bob's products, and I get a Herpetiform lesion at the least gluten exposure.
XG also results in an increase in water in the intestines
There is evidence that the gut flora changes with long term XGintake. This results in easier digestion of the byproducts.
The bottom line is that while the effects on the gut can be disturbing...a feeling of mild bloating, with loose stool at the extreme, the long term effects might be useful. Short chain FA has many useful effects in the body, delaying hunger,increasing the use of body fat as fuel, and may have cardiac benefits.
However, the Internet is replete with stories of intolerance of XG. A few sound like bonfafide allergies.
But most are similar to the effects of eating beans if one is not accustomed to them. That is, the production of poorly digested resistant starch. You have to grow the bugs that eat them, or gas will be produced. So, with slow introduction, and probiotics, most people will grow the right bugs.the evidence is that XGcauses profound changes in gut flora over time. Studies are needed to ascertain if this is ultimately good. The use of XG in infant formula as a thickener has resulted in bacterial overgrowth resulting in deaths. It is no longer used as such.
Am I going to use it? Probably. But as a treat, not a staple. gluten-free foods are my candy. Having type 1diabetes I find I am healthiest with no refined carbohydrates in my diet. Yeah, none. All carbs in whole grain form, or still attached to the plants that formed them . Ground grains are refined cargos...yes indeed . Some gluten-free flours raise blood sugar as rapidly, even higher, than white flour. And they cause weight gain...which is associated with insulin resistance and Type 2 diabetes. They are not nutrient dense and so are not an improvement on the Standard American Diet, with its very high risk for formation of diabetes.
I wish all of you the benefit of your own experience. Eating is very deep and personal, and many of us celiacs have a sense of deprivation and sadness at not being normal. Which makes high carb relatively empty baked goods seem very comforting ,in the broad array of gluten-free possibilities. Good on ya if you choose to eat them, but keep your eyes open as to the effects."normalcy"may mean obesity and diabetes.
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Ed in Baja added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Neurological Problems Three Years Post Diag., gluten-freeHi Folks,
Have not been on in a long time.
My main symptoms prediagnosis were neurological...I Went all the way to cerebellar ataxia.
I had great hopes that going gluten-free would make me magically better...but have found that while the acute ataxia andHD skin problems largely resolved, other symptoms are progressing. A forum member gently informed me at the time I was Dx'd that symptoms may progress. That the neurological problems are perhaps triggered by gliadin, but can continue with gluten-free diet.
Sadly, this seems to be the case. I have proximal motor neuropathy , a gradual weakness of big muscles in thighs and legs, muscle tightness and cramping. Third and fourth fingers go numb.muscle and bone pain.
Progressive memory problems. I am only 58.
Ibuprofen in morning, occasional Vicodin at night when it's really bad. Helps some. Walking difficult, bike bicycling really seems to help, as does moderate weightlifting. Massage is painful, but helps. Maybe there is some recruitment of new nerves fibers. Low stress also seems to help. Depression is a risk I am always aware of...it's easy to become so when it's seems that one can only do less, not more.
I would be pleased to hear from anyone else who is having similar issues. If you are, hang in there!
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Ed in Baja added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)2 Years Out...Hi Y'all,
When I was diagnosed, I felt better right away, but worried about lingering nuero muscular problems. I had progressed to cerebellar ataxia in the 15 years of lack of diagnosis. Scared me BAD! I have IDDM type 1 as well. My motor nerve problems had always been called diabetic amyotrophy, though they did not fit the profile, just a convenient garbage can diagnosis.Concurrent celiac disease seems to accerlerate various nueropathies, as I have read. Much later, I correlated symptoms with periods of high gluten consumption. After going gluten-free, I experienced a lot of improvement. A forum member cautioned me, and indeed there has been some permanent damage, and continued episodes which I can correlate with HD lesions. If I eat at restuarants, and eat corn chips or fries the oil seems to be contaminated with gliadin from fried wheat breading, etc. Then I get a small HD lesion, and notice the weakness again. Also, maybe a correlation with wheat based vodka? has any body noticed anything like this? Also seem to feel a little off when I try to eat gluten free bread with Xantham gum...more like a little stomach indigestion. Anybody notice this?
Rice and corn pasta seem ok.
Incidently, and not to preach, I feel best on a near vegan diet: dairy, meat free. All my blood work went normal, HB A-1c at 4.2. Lost 35 lbs.Then fishing season comes, and I cannot resist catching and eating the dorado and yellowtail we have here. I now have recovered enough that I can resume fishing from my sea kayak and surfing! There is hope.
Ed in Baja
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Ed in Baja added a post in a topic First Post :) Gluten Associated Neurological Symptoms
Ed in Baja added a topic in Celiac Disease - Coping WithAdrenal Problems?Three months post diagnosis, going well. But some weeks ago I went deep sea fishing, fought some really big fish, came home and was flat for a week, all the fatigue returning. Endo Doc says it might be adrenal problems as well, suggested "polyendocrine syndrome". Any body else have experience of this? I suppose it stands to reason, all of the hormones work together(I heave Type 1 diabetes too).
Incidently, this week did a challenge test with 2 tecate beers...the next day got a raging HD lesion in the same place on my thigh, have not had it for weeks before!
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