jangle Posted February 6, 2012 Report Share Posted February 6, 2012 Lately I've noticed I feel more lightheaded after eating foods with cheeses. (Although still not sure if this is related only to the volume of food) aka superbowl weekend large pizza = sad Jangle.Anyways, I've had my IgG antibodies screened and they were negative. So it is unlikely (though still possible) that I have celiac disease. I'd rather not go through the hassles of a gluten free diet if it won't do anything for me, I was wondering if anyone has any success with a gluten free diet and if they have any knowledge about celiac disease causing POTS? Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 6, 2012 Report Share Posted February 6, 2012 jangle, i'm going to bet it was the bread on the pizza and not the cheese. I can't eat pizza either Quote Link to comment Share on other sites More sharing options...
kayjay Posted February 6, 2012 Report Share Posted February 6, 2012 I do better without gluten. My "IBS" was caused by gluten. I still have POTS related tummy trouble but going off of gluten has improved many symptoms for me. I also have less pain and headaches. Now that I no longer eat gluten I have no trouble with dairy. When you have a gluten problem it can make dairy a problem - but this gets better for most after your system heals.At first the gluten thing was hard- there is a learning curve and you miss some foods. Now I am no longer tempted when my family eats Dominoes!! When I think about it stomach problems were an issue for me when I first got sick. I also had trouble keeping weight on. You could try it for a few weeks and see if it helps you. Celiac can cause all kinds of problems. My initial test was also negative. True celiac is partially an inherited problem. I had genetic testing done. I have the gene for Celiac and one associated with gluten intolerance. I feel better off of gluten ... you may also! It has been less then 2 years for me but now if I eat gluten I know it Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 6, 2012 Report Share Posted February 6, 2012 Pizza is also often covered in cheap meats that all contain large amounts of nitrates which readily convert to nitric oxide and potentially increase vasodilation or perhaps NO activation.But it was the superbowl man - you had to do it!Cheese by the way would indicate lactose intolerance - or perhaps you are sensitive to the tyramine in cheese (precursor and stimulant of release of norepinephrine) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 6, 2012 Report Share Posted February 6, 2012 I got IBS from pastry. But ive tried various diets for my health problems. All improve me at first and then work less eventually (no dairy, gluten free, sugar free, vegan, etc). Low starch is my next interest but I am weak! Quote Link to comment Share on other sites More sharing options...
jangle Posted February 6, 2012 Author Report Share Posted February 6, 2012 I do better without gluten. My "IBS" was caused by gluten. I still have POTS related tummy trouble but going off of gluten has improved many symptoms for me. I also have less pain and headaches. Now that I no longer eat gluten I have no trouble with dairy. When you have a gluten problem it can make dairy a problem - but this gets better for most after your system heals.At first the gluten thing was hard- there is a learning curve and you miss some foods. Now I am no longer tempted when my family eats Dominoes!! When I think about it stomach problems were an issue for me when I first got sick. I also had trouble keeping weight on. You could try it for a few weeks and see if it helps you. Celiac can cause all kinds of problems. My initial test was also negative. True celiac is partially an inherited problem. I had genetic testing done. I have the gene for Celiac and one associated with gluten intolerance.I feel better off of gluten ... you may also! It has been less then 2 years for me but now if I eat gluten I know it So it's possible to beI got IBS from pastry. But ive tried various diets for my health problems. All improve me at first and then work less eventually (no dairy, gluten free, sugar free, vegan, etc). Low starch is my next interest but I am weak!Pretty much every breakfast item contains starch. You'd almost have to just skip breakfast.kayjay your igG test was negative? I think I read somewhere that that detects celiac disease for up to 85% of celiac patients. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 6, 2012 Report Share Posted February 6, 2012 jangle - as a male, do you ever wear aftershave? Since i got pots if I put it on my throat I am instantly dizzy. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 6, 2012 Author Report Share Posted February 6, 2012 jangle - as a male, do you ever wear aftershave? Since i got pots if I put it on my throat I am instantly dizzy.No, I've never worn aftershave, but I could always try it out and see what happens. Quote Link to comment Share on other sites More sharing options...
issie Posted February 6, 2012 Report Share Posted February 6, 2012 Oh, NO us women want to smell that JOVAN Musk! Too bad, Rama. Got to figure out that scent sensitivity - your poor sweetie/wife, I'm sure, enjoys the smell. LOL :) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 6, 2012 Report Share Posted February 6, 2012 Yeah its weird. I dont think its the smell, its the chemiclas in it somehow doing something that instantly brings on POTS for a few hours. Weird. I used to wear it a lot when I was younger no hassles, but post POTS its a no no. Quote Link to comment Share on other sites More sharing options...
issie Posted February 6, 2012 Report Share Posted February 6, 2012 I have scent sensitivities too and have found one perfume that I can use that doesn't give me a headache. You might try others and see what they do for you. It just might be that one. Like I said - I love the Jovan Musk and my hubby wears it for me - and it doesn't bother me either. Can you go to the counters and try out things before you buy them where you are? Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 6, 2012 Report Share Posted February 6, 2012 Sense of smell... I can wear scented lotions, but usually NOT perfume. I have an unbelievable reaction, especially to strong chemicals...good thing, too, because my husband had NO sense of smell, so if the house is burning down, I will save the family....lol... Seriously, when I had my MRA, the dye heightened my sense of smell 10 fold!! The guy that was doing my test had on cologne that smelled nice, but I was extremely hypersensitive after the dye was injected...strange sensation, I'm telling you!! Weird I guess I am not even on the topic. I do have GI issues, but I don't yet know what triggers them...everything in moderation right now Yogurt helps! Quote Link to comment Share on other sites More sharing options...
kayjay Posted February 6, 2012 Report Share Posted February 6, 2012 I don't know what test ... sorry. I really was too sick to care at the time. Gluten was an afterthought. I had testing done though an independent lab and the American Red Cross does the genetic testing. The biopsy is currently the best way to get a diagnosis. These too can sometimes give a false negative. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted February 7, 2012 Report Share Posted February 7, 2012 Most of my me/cfs symptoms are gone now and most, if not all my neuro problems were from gluten.caffeine did a number to me too tho. It kept my heart and adrenals racing for hours .. From what I've read, The testing for celac disease isn't reliable.. Which is why the trend now is to go gf and see how you feel. "Theglutenfile" explains this and can give you an idea of what gluten can do .. My understanding is that the stool test is the most reliable. I believe it since even my gluten antibodies were normal after I'd gone gf but was eating quite a bit if those "gf" processed foods. And my stool test says I have antibodies everytime still .. There are quite a few of us here that are gf .. tc .. D Quote Link to comment Share on other sites More sharing options...
issie Posted February 7, 2012 Report Share Posted February 7, 2012 I found that going glutten free has almost reversed my neuropathy. I was having it real bad in my feet/legs and hands and now hardly notice it. I did not test positive to celiac and not even positive on alternative testing - but, I am sensitive to it and do believe it was one of the exasberaters of my neuropathy. Being off of dairy has been a big help too. People with MS type symptoms do better dairy free and if there is an autoimmune component - not a bad idea, to try.Issie Quote Link to comment Share on other sites More sharing options...
jangle Posted February 7, 2012 Author Report Share Posted February 7, 2012 Ill try going glutton free but it seems impossible as every food seems to have a million ingredients in it. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted February 7, 2012 Report Share Posted February 7, 2012 Imho, One simple way to try this if you don't want to give up grains is to simply replace your current grain with gf ones. They're easy to find nowadays. At least in the us .. If you google gf, you'll get an ideawhat's available. The only problem is that some gf foods are tasteless so it helps to know which ones toavoid. You couldn't pay me to eat energy bread .. Or that pecan one .. Homemade gf foods will knock your socks off tho .. Lol .. We usually have homemade gf foods atMy celiac support group mtgs. I heard udi's bread is good. Tinkyada brown rice pasta is supposed to be the best. Boar's head meats are gf but there are other ready to eat meats that are too. Many restaurants have gf options too. Chilis, outback, Olive garden, etc .. Tc .. DPs. There isn't a standard for the amount of gluten allowed in "gf" foods in the us yet so these foods are typically cross contaminated. Somepeople can handle a little gluten and some can't. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 7, 2012 Author Report Share Posted February 7, 2012 Is subway gluten free? They have like 5 dollar subs I've been living off those for lunch and dinner XD Quote Link to comment Share on other sites More sharing options...
issie Posted February 7, 2012 Report Share Posted February 7, 2012 Is subway gluten free? They have like 5 dollar subs I've been living off those for lunch and dinner XDNo, sorry. Wheat, oats, rye and barley are the grains that you have to avoid to be gluten free. It is really hard - but, can be done. If you like subway - get the salads and not the bread. I don't know about the meats if there are fillers - but, I can do the meats - just have it in salad form - no crackers. If there is a Trader Joes near you they have their brand of Rice Bread and it's a little dry, but not too bad for sandwiches. Also, they have a brown rice tortilla and spaghetti noodle that is good. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 7, 2012 Report Share Posted February 7, 2012 I had MS like symptoms and thought I had it for years; I don't eat ice cream anymore, or drink milk, but I love cheese...that is my weakness. I don't eat it as much as I used to. I don't think any of my testing pointed to autoimmune diseases, but I do have asthma. I'll keep that in mind...thanks Issie Quote Link to comment Share on other sites More sharing options...
issie Posted February 7, 2012 Report Share Posted February 7, 2012 I had MS like symptoms and thought I had it for years; I don't eat ice cream anymore, or drink milk, but I love cheese...that is my weakness. I don't eat it as much as I used to. I don't think any of my testing pointed to autoimmune diseases, but I do have asthma. I'll keep that in mind...thanks IssieYou might want to stay on your magenesium too - that would help with MS too. It's just that neuro-magnesium I was warning against. Magnesium can lower your bp though - so if you have low bp's be careful of magnesium. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 7, 2012 Report Share Posted February 7, 2012 Thanks...I asked my neuro about the magnesium lowering my B/P, and he said it shouldn't be a problem for me, but I'm still concerned about my left kidney, so I'll ask my internist about this I may end up going to a kidney specialist. Like I need another doctor appointment Quote Link to comment Share on other sites More sharing options...
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