Ed in Baja

Widmer brewery in Portland makes a VERY good IPA that is certified at less than 20/ million . I had no reaction to it.

Industrial Quaker's oat production...? I have eaten regular old oats and had no problem, in restaurants, for example. But then I did.

Seems a gamble for me.

I 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.

Actually, there are many case studies showing that neuro problems can progress in the absence of gluten in the diet. I found them when I was puzzled as to why my symptoms progressed. Its most common in people who present with neuro problems, and may have very few classic celiac gut issues. That was my case.It's also clear that therapies such as an appropriate exercise program, physical therapy, acuncture, massage can help, and it sounds like there are a lot of people responding to you about vitamin problems, that's the great thing about this site.

Don't despair! I have the hand issues also, but it is a minor nuisance compared with the other neuro problems. I try to focus on what I CAN do.

Hang in there!

Hi 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!

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

Hey y'all!

 

LONG time reader, first time poster.

 

I feel almost silly asking this, but can you physically feel gluten damaging your body if you have celiac disease?  I have been a diagnosed celiac for 4+ years at age 17, and while at first I was TOO rebellious (as in I didn't give a dang and ate whatever I wanted because "you can't stop me!"), I have since grown out of that awful mindset.  However, long story short, I got BIG TIME glutened last night at work.  As in, straight up shovelling wheat-based pasta into my body.  While I'm obviously not going to feel well, I almost can feel like there are holes being chewed in my body when I get glutened.  Is that just me?  I'm not actually feeling the damage, am I?  This has been a curiosity of mine for years because that is exactly what it feels like.

 

Thanks guys!  This forum has been a valuable resource for me for years now, and hopefully will continue for years to come!

When I visted my chinese doctor once for nuero muscular problems after a similar episode( we all rebel sometimes consciously or not) he said"why you do that?". So, why you do that? might be useful to explore that for yourself. And yes, i feel bad when i do that, and can feel my muscles responding poorly, and I feel clumsy, and guilty. Hang in there,and learn.

Hope you are feeling better! My symptoms were mostly nuerological as well. In retrospect I did have some GI upset...thought it was the green chili suace! ( I live in baja, Mx.)But not classic celiac disease GI problems.

Brain fog almost gone after six months. Just in the morning now. Nueromuscular problems better ...75% or so. It IS discouraging that they persist to some degree. I went all the way to cerebellar ataxia...could hardly walk. Thought that I had MS. So I am much better now and have accepted that it takes a long time to recover . I was a windsurfer, and have to leave it. but I can sail in my 25' sloop in light winds. It is a matter of accepting what you CAN do!

Remember that what is called celiac disease is long standing condition, tissue changes due to the inflammatory effects of the auto immune response. Mine was undiagnosed for 15 years... I have Type 1 diabetes also, and symptoms were attributed to that. It is clear that there are huge ranges in sensitivity and types of reactions. Hence cross allergies(e.g. milk for some) and variations in severity. Sadly, It is increasingly clear to me that many gluten-free products are not, and restaurants are very dangerous to me . Oil seems to transfer allergens even if breading, etc is gluten-free...maybe even cutting boards? I get a nuerological slam when I eat out now...I seem to be getting more sensitive.

Fortunately I like to cook, and my wife likes gluten-free food. We focus on a natural diet, as in no processed food.

Tortillas, beans, rice, fruit, fish and a little meat kept people healthy for thousands of years. gluten-free cake, cookies, mixes are Frankenstein foods to me, edible food like substances, not food. They are miracles of chemistry...but who knows what those chemicals do to you in the long run? Why trust the  food science industry that got me into trouble in the first place? I can't take the chance.

Good luck!

Ed

Good for you! I am not a Vegan...but eat mostly vegan. If you claim to be one and then qualify as in "I eat a few eggs" you will get slammed by the true believers. I adopt a vegan diet regularly, then eat some fish, or my neighbor will bring me some lobster..the author Micahel Pollan has distlled the minimum common denominator of a healthy diet as: "eat real food (not processed), mostly plants, not much". It works. Most folks on this website are still suffering from the shock and realization of being different ( I went through it with diabetes first) and long to be normal. Food preferences are very deep in our cultural makeup. Many are ingenious in efforts to eat a "normal" diet utilizing a great deal of highly processed gluten-free substitutes. Everybody is on their own journey of discovery of what truely works. But if I want to feel really good, I eat a gluten-free vegan diet. Then I splurge with a nice fish fillet, an egg, rarely. Check out the vegiac.com website, if you need more vegan friendly celiac friends. Don't get me wrong. This website has helped me hugely. But you might like to broaden your horizons.

You might consider at least temporarily eating a vegan diet...I lost a ton of weight and bp dropped too.

Thanks! Its an adventure. Your explanation makes sense to me.

Ed

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!

I did a challenge test the other day by accident and got slammed with a return to symptoms...breading on fish that I somehow did not notice. Wow. I guess this really is a one way trip!!

I had a red beard , before it went white. Some red hair, a real mutt.I have several redheads in my family. Family is from Italy, where there is a LOT of celiac disease. No more pasta for me! I have noticed in my career, Dentistry, where I viewed many medical histories, that redheads seem to have a lot of allergies and auto immune diseases. It is a recessive trait.

Ed

I totally empathize. My symptoms were "undiagnosed" since they appeared 10 years ago and consequently I lost my career, and progressed to major neurological problems before being diagnosed. But the truth is I feel better and better each day. And have received a great deal of support from the people here in this forum. Anger and despair are certainly temptations, but the gentle and informed opinions of these folks keep me turned toward the positive. Which is essential, in the long run. Much more helpful than the well meaning pity of my family members, who send condolences for this "terrible affliction" that sound like they belong at a funeral LOL!!!

Hang in there, it really does get better. And BTWL, it seems that one has enough accumulated antigens stored in the body to generate flare ups independent of diet for quite a while. gluten-free for a while now and still have some DH lesions on my thighs. OH well.

Ed

Thank you so much for the kind and considerate responses, as well as being obviously well informed. Very good to know that there are others out there dealing with this stuff successfully.

Regards, Ed

Just diagnosed with celiac disease, after 26 years with IDDM. Have had increasing nuero muscular problems for ten years, but always got "what do you expect, you have type 1". peripheral nueropathy, gastro paresis, diabetic myopathy, lots of things suggested, no Dx. one Dr even thought it was stiff man sysndrome. My very active life has gradually been curtailed, and I have coped, until the ataxia started, along with memory problems and mental confusion. A chance conversation with a Nurse PT when I needed an insulin Rx in San Diego led to investigating celiac disease. In 25 years no MD has ever mentioned the possibility...is it outside the comfort zone of the average endo? Oh well.

Over the years when the symptoms got bad I went on extreme diets, the first one being no carb. Later I tried Furhman's Eat to Live Vegan diet. Both helped greatly though at opposite extremes, the one being all protein, the other Vegan. What they had in common was no wheat.

Now, with a week of gluten free diet, muscle pain and ataxia is diminishing rapidly, but the mental slowness persists. Feels like being slightly hypoglycemic (but sugar is normal), or slightly stoned (yes, I inhaled... many years ago, so what) or having had a couple of drinks.

It is scary and frustrating.

I hear conflicting info...mental symptoms go away, no they don't, they get worse even if gluten free, the damage persists but only gets worse if you continue, on and on. I can only surmise that there are a wide range of responses, and the science is not clear. Anyone who has had similar experiences or knows something please respond.

I gave up my profession five years ago, moved to Mexico where it is cheap and warm. But now I am wiped out when I fish, dive, kayak (for a couple of days), can't carve wood anymore,can't windsurf, can't use a hammer without cramping, have trouble on ladders. Can't drink beer, really kicks me in the head. A pisser. Does this get better? I sure hope so.

Ed in Baja