lewis Posted November 11, 2015 Report Share Posted November 11, 2015 So I have been tested and was I told I don't have celiacs or gluten intolerance but definitely have an issue any time I eat gluten. Within twenty minutes I can barely stand due to orthostatic intolerance. I also know I have a problem with anything that has been enriched but have tried non enriched flour with the same result. I have searched and can't find why it makes everything worse? Quote Link to comment Share on other sites More sharing options...
ks42 Posted November 11, 2015 Report Share Posted November 11, 2015 Have you had ALCAT or allergy testing for wheat or gluten? Celiac's is an inflammatory / autoimmune response of your intestine to the ingestion of gluten, so the testing for that is not the same as the testing for a gluten allergy or intolerance. Also, you can be fine with gluten but react to wheat itself (complicated, I know!). A gluten or wheat allergy is tested for with scratch tests or IgE blood testing, and an intolerance is tested with ALCAT (which is different than allergy testing). Also, are you always noticing it when you eat gluten in the same form? For example, are you reacting specifically to products that contain flour (which would be mostly simple carbohydrates like breads, pastas, cereals, etc) or are you reacting to other products with gluten (like soy sauce, salad dressings, other condiments) as well? There's gluten hidden in a ton of stuff you wouldn't think about. If you're reacting mostly to products with flour, like breads, pastas, and cereals, and you're fine with gluten-containing condiments (and you've completely ruled out Celiac's, wheat or gluten allergies, and intolerance), it's possible it's not the gluten or the wheat. Simple carbs - especially bread, pasta, and cereal - can make POTS and other nervous system disorders much worse. When I first got sick, a bowl of cereal or piece of bread would send me into the biggest flare ever, but it wasn't due to the gluten. It was due to the way our bodies process simple carbs (by quick conversions to sugars, which is irritating to the nervous system and the adrenals). I've been on a diet of no simple carbs - I eat high protein, complex carbs, and no processed foods, and saw a huge difference with that. Of course, I can't tell you if that's really your issue (we're all individual) but it might be something to think about. Quote Link to comment Share on other sites More sharing options...
lewis Posted November 11, 2015 Author Report Share Posted November 11, 2015 Thanks for the information. I don't seem to have a problem with simple cards unless it has gluten (only tried flour gluten but might try other forms that have gluten in it) or any enriched product like cornmeal. I can eat an entire bag of Doritos with no problem but a hand full of cheetos(enriched)and I'm hating it. I haven't tried very many other things with gluten unless they lie on the label as I check everything. I have tried licorice and after my heart started racing I checked the label realizing it had flour in it. I had the IgE blood testing but no scratch test or ALCAT. When I first got sick I did have an entire simple carb issue but since starting the excersizing I have less of an issue with them. I will look into those other tests. Quote Link to comment Share on other sites More sharing options...
fitnesskelly Posted November 11, 2015 Report Share Posted November 11, 2015 Food allergies and intolerances manifest in various ways. For me, gluten cause immediate and bad reflux. Sounds to me that it might manifest in a form or severe orthostatic hypotension for you.Even the best tests for celiac/gluten allergy are known not to be very good. The best judge of if you have an allergy or intolerance is your reaction to eating the offending food. Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 13, 2015 Report Share Posted November 13, 2015 Food allergies and intolerances manifest in various ways. For me, gluten cause immediate and bad reflux. Sounds to me that it might manifest in a form or severe orthostatic hypotension for you.Even the best tests for celiac/gluten allergy are known not to be very good. The best judge of if you have an allergy or intolerance is your reaction to eating the offending food.Totally agree. My son doesn't have celaic according to modern medicine but putting him on a strict gluten free diet healed all of his problems. If he accidently has any he gets sick (thankfully this has only happened a handful of times. He doenst have the genes for celiac but he had all of the symptoms and changing his diet really was a cure for him. His doctor put a diagnosis of "gluten Intolerent" into his chart. She has been his pediatrician for a long time and agrees that gluten free did the trick. The GI doctor was certain that he didn't have a problem with gluten. After 3 years of not thriving a diet change made a huge difference in less than a month. We are 1 1/2 years gluten free and prais God he is vibrant and healthy. excuse the pun but definitly "go with your gut". Quote Link to comment Share on other sites More sharing options...
fitnesskelly Posted November 13, 2015 Report Share Posted November 13, 2015 Like kJay said, I don't have the classic celiac symptoms, but I had terrible recurrent attacks of pancreatitis from 19 or 20 until I quit gluten. My tests for pancreatic enzymes would test sometimes as high as 10X the top of the normal range. Since quitting, I stay in the normal range. I don't need to pay for expensive and mostly inaccurate testing to know gluten is a problem. Quote Link to comment Share on other sites More sharing options...
Nymph Posted November 14, 2015 Report Share Posted November 14, 2015 Non-celiac gluten sensitivity is a real thing and can have neurological effects. See the Patient Celiac blog (written by MD) for some good starting information. Also, blood screen alone does not rule out celiac. She also has good info on that. Good luck figuring it out. Quote Link to comment Share on other sites More sharing options...
ks42 Posted November 14, 2015 Report Share Posted November 14, 2015 That's an excellent point about blood testing for Celiac's. It's highly inaccurate, so it isn't a good measure of whether you do or do not have it. Did you have blood tests, or a biopsy? If you have biopsies taken from your small intestine (for example, during a colonoscopy) and they're sent to a really good pathology lab, they are MUCH more accurate in diagnosing Celiac's. My one GI specialist actually worked with Celiac's research, so he skipped bloodwork all together and went straight to small intestine biopsies for me (which were, fortunately, negative). In my case, I was told a negative small intestine biopsy should be extremely accurate, as long as I was eating gluten regularly and having symptoms at the time it was taken. And, as I said above, you can have allergies/intolerances without having Celiac's, anyway. Quote Link to comment Share on other sites More sharing options...
lewis Posted November 17, 2015 Author Report Share Posted November 17, 2015 That's an excellent point about blood testing for Celiac's. It's highly inaccurate, so it isn't a good measure of whether you do or do not have it. Did you have blood tests, or a biopsy? If you have biopsies taken from your small intestine (for example, during a colonoscopy) and they're sent to a really good pathology lab, they are MUCH more accurate in diagnosing Celiac's. My one GI specialist actually worked with Celiac's research, so he skipped bloodwork all together and went straight to small intestine biopsies for me (which were, fortunately, negative). In my case, I was told a negative small intestine biopsy should be extremely accurate, as long as I was eating gluten regularly and having symptoms at the time it was taken. And, as I said above, you can have allergies/intolerances without having Celiac's, anyway.I did have the biopsy done, also negative for celiacs. My gastro doc go eat as much gluten as you want it won't bother you. So I did and it still really bothered me. lol Quote Link to comment Share on other sites More sharing options...
fitnesskelly Posted November 17, 2015 Report Share Posted November 17, 2015 My understanding is that even though the biopsy is the current gold standard test, it is still very inaccurate. Go by symptoms. Not eating gluten won't hurt you. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 18, 2015 Report Share Posted November 18, 2015 My GI doc did both blood and biopsies for gluten intolernace/celiac. They were negative but he said it really doesn't matter because the only way to know for sure is to go gluten free and see what happens, both coming off the gluten and also if you try gluten again after a couple months off of it.I did it (twice). I was gluten free the first time for 4 months. Went back on it. I wasn't better or worse on or off gluten. The second time, I was grain free including corn and rice. I was markedly better in my GI symptoms. Immunologist had me add back one grain at a time to see what I reacted to. Turns out gluten doesn't bother me but rice makes me want to die!! Who would have thunk it?! Rice??!! So that was eye opening.I have some other weird food sensitivities too like corriander/cilantro, bananas, grapes, and avocados. (Just to name a few.) I actually test allergic to everything except for fish, chicken, and beef on skin patch testing. But, that wouldn't be a very healthy diet, so I have had to tinker with foods and see what I actually react to when I eat it. It is a long process and there is still something I'm eating periodically that I must be sensitive to but I can't put my finger on it. Quote Link to comment Share on other sites More sharing options...
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