Feeling Like The Odd Man Out Here

[zus888]

Yes, I am very lucky to have a caring doc here in Pittsburgh. Don't worry. I'm going on the diet - the weekend of March 5th (I see the dietitian on the 3rd). It gives me a few weeks. Plus, I'm waiting on the kids' test results. Though, it's that weekend for me regardless of where the kids are with their testing. I'm currently going through all my recipes to find the ones that are free of gluten so I have some staple recipes to use for the first week or so, and then I'll try to start adding more. Dinners should be easy. I plan to rely on yogurt, eggs, and fresh fruit and veggies for the rest of my meals. Not planning to buy many replacements at the moment.

It's going to be a big weekend here for me. I have my BFF coming to make me a good meal and then helping me to clear my cupboards and organize the kitchen. I'll have a completely fresh start when she leaves. I'm sure there will be tears involved, but hopefully, her sense of humor will see me through it.

Meanwhile, I'll be going through some of the stuff I have in there and making calls because I don't know if things like "natural flavorings" or "spices" are things I can trust or not (like in salad dressings and chili sauce).

Don't worry. I AM going on the diet 100%. Just not happy about it. Not happy at all. But I do have some hope that I will feel better. I do experience tiredness quite a lot (falling asleep on my daughter while playing pretend) and I have been saying for years that I have the memory of a fungus gnat. So, maybe those things will improve.

[catarific]

The problem is not really a problem, catarific, because any sensible person whose symptoms are not improving on the gluten free diet is always advised to return to their doctor for further work-up and certainly any sensible person would. And I think that most of the people who have come this far, as to have to diagnose their own problem because no one is doing it for them, is a sensible person.

I guess we will have to agree to disagree on this one. How many times have you read on the forum that those who have a gluten intolerance and gave up gluten are really feeling better? Or how many times have we read that once gluten is given up, other sensitivities (dairy, nightshades, sugar, starches) have become prevalent that were not there before? And what about those who also even though giving up gluten still have malabsorption? I am not talking about those who know for sure they have celiac - but there are many, who gave up gluten who may feel somewhat better but not fully better. I am not saying that they do not feel better not eating gluten, I am sure they do feel better. But, what I am saying, is that this should be taken a step further to rule out Crohns or IBD because these diseases may need much more than dietary changes and could really do extensive damage left unchecked.

[cahill]

I guess we will have to agree to disagree on this one. How many times have you read on the forum that those who have a gluten intolerance and gave up gluten are really feeling better? Or how many times have we read that once gluten is given up, other sensitivities (dairy, nightshades, sugar, starches) have become prevalent that were not there before? And what about those who also even though giving up gluten still have malabsorption? I am not talking about those who know for sure they have celiac - but there are many, who gave up gluten who may feel somewhat better but not fully better. I am not saying that they do not feel better not eating gluten, I am sure they do feel better. But, what I am saying, is that this should be taken a step further to rule out Crohns or IBD because these diseases may need much more than dietary changes and could really do extensive damage left unchecked.

For me , celiacs was the last step in a very,very long road of tests, Cat scans, MRI's,spinal tap for MS, digonosed with IBS at 23 but meds did not help,heart cath(because of heart palpitations) multiple colonscopys , osteoporosis, thyiod issues,ect.........a very long road indeed,, about 40 years of test,misdiagnosis,medications , and being made to feel like I was a hypochondriac,it was all in my head.

I am not "officially" diagnosed and I have other intolerance that surfaced after becoming gluten free,,,,But I am alive and I dont walk into walls or fall down( as much) ,,,unless I have been glutened .

My life is 10000000000 times better than before I went gluten free,,,, I am soooooooo not caring that I dont have an "official" diagnosis

[ravenwoodglass]

I guess we will have to agree to disagree on this one. How many times have you read on the forum that those who have a gluten intolerance and gave up gluten are really feeling better? Or how many times have we read that once gluten is given up, other sensitivities (dairy, nightshades, sugar, starches) have become prevalent that were not there before? And what about those who also even though giving up gluten still have malabsorption? I am not talking about those who know for sure they have celiac - but there are many, who gave up gluten who may feel somewhat better but not fully better. I am not saying that they do not feel better not eating gluten, I am sure they do feel better. But, what I am saying, is that this should be taken a step further to rule out Crohns or IBD because these diseases may need much more than dietary changes and could really do extensive damage left unchecked.

As was stated folks that are doing the diet strictly and still have issues are encouraged to go back to their doctors. There are many here who feel much better and have gotten their lives back by following the diet even when tests were negative. Can we have other issues going on, of course we can. Can we have other intolerances, yes we can. Many who are self diagnosed have spent years and countless dollars on doctors and testing only to be told everything was 'in their heads' or to be diagnosed with countless things that in reality had the root cause in the missed celiac diagnosis. Celiac disease and gluten intolerance are not a cure all for everything but for most that are self diagnosed, and I am not one of them, things like Chrons and IBD have already been ruled out.

[ravenwoodglass]

It's going to be a big weekend here for me. I have my BFF coming to make me a good meal and then helping me to clear my cupboards and organize the kitchen. I'll have a completely fresh start when she leaves. I'm sure there will be tears involved, but hopefully, her sense of humor will see me through it.

Meanwhile, I'll be going through some of the stuff I have in there and making calls because I don't know if things like "natural flavorings" or "spices" are things I can trust or not (like in salad dressings and chili sauce).

Don't worry. I AM going on the diet 100%. Just not happy about it. Not happy at all. But I do have some hope that I will feel better. I do experience tiredness quite a lot (falling asleep on my daughter while playing pretend) and I have been saying for years that I have the memory of a fungus gnat. So, maybe those things will improve.

I'm glad you have a good freind that is going to help you through the process. As another poster stated depression can be directly related to celiac. There have been many studies on it and if you do a search using the words celiac and neurological or celiac and depression you will find a lot of peer reviewed info. It is hard at first but once you have healed you will have a lot more energy and you will likely see a big improvement in memory. Be aware that many dieticians are really lacking in knowledge about celiac so just be prepared if you walk in and find you learned more from the allowed and not allowed lists on the home page here than she/he knows. There are companies that will reliably label gluten, Kraft, Unilever and Hormel are just a couple and more companies are getting better every day. You may want to post the brand names and items that are your favorites on the products section as someone here will likely have already checked it out. You may be surprised how much stuff you don't have to donate or toss. I know celiac was not a diagnosis that you wanted but that diagnosis may very well save not only your life but also your quality of life.

[zus888]

I am also VERY lucky to have a dietitian that not only specializes in celiac diets, but has also been diagnosed with celiac himself. He's been gluten-free for years. I feel like I can trust his input, and he keeps assuring me that it isn't THAT bad! LOL! My MIL and DH will be there as well - he said that the appt will take a couple of hours. I'm glad MIL is coming because she doesn't really "get" the whole cross-contamination issue - nor do most people I know. I will need her on board if I'm to ever eat there again. Plus, if the kids turn out to have it, she will need to understand and adhere to the diet when feeding them.

[cahill]

I am also VERY lucky to have a dietitian that not only specializes in celiac diets, but has also been diagnosed with celiac himself. He's been gluten-free for years. I feel like I can trust his input, and he keeps assuring me that it isn't THAT bad! LOL! My MIL and DH will be there as well - he said that the appt will take a couple of hours. I'm glad MIL is coming because she doesn't really "get" the whole cross-contamination issue - nor do most people I know. I will need her on board if I'm to ever eat there again. Plus, if the kids turn out to have it, she will need to understand and adhere to the diet when feeding them.

I am glad that you have the support of your family and the medical community.

And your dietitian is right, going gluten free is really not that bad a new way of thinking/cooking for sure but seriously not that bad.

Much health

[srall]

As was stated folks that are doing the diet strictly and still have issues are encouraged to go back to their doctors. There are many here who feel much better and have gotten their lives back by following the diet even when tests were negative. Can we have other issues going on, of course we can. Can we have other intolerances, yes we can. Many who are self diagnosed have spent years and countless dollars on doctors and testing only to be told everything was 'in their heads' or to be diagnosed with countless things that in reality had the root cause in the missed celiac diagnosis. Celiac disease and gluten intolerance are not a cure all for everything but for most that are self diagnosed, and I am not one of them, things like Chrons and IBD have already been ruled out.

Thank you for writing this. I read the post about people who self diagnose and it's bugged me all day. I always sort of wonder if people with an "official" diagnosis feel like it's more real for them than those of us who had to self diagnose. My mother, myself and my daughter have all tried to figure out what was wrong with us only to be told all the tests were "normal." I'm too tired right now to laundry list all the issues that we had that ALL cleared up gluten free. My faith in doctors has gone way down since going through this whole process. We all feel better, look better, behave better. At this point this is enough for me.

[mushroom]

I guess we will have to agree to disagree on this one. How many times have you read on the forum that those who have a gluten intolerance and gave up gluten are really feeling better? Or how many times have we read that once gluten is given up, other sensitivities (dairy, nightshades, sugar, starches) have become prevalent that were not there before? And what about those who also even though giving up gluten still have malabsorption? I am not talking about those who know for sure they have celiac - but there are many, who gave up gluten who may feel somewhat better but not fully better. I am not saying that they do not feel better not eating gluten, I am sure they do feel better. But, what I am saying, is that this should be taken a step further to rule out Crohns or IBD because these diseases may need much more than dietary changes and could really do extensive damage left unchecked.

Yes, catarific, many of us do have or do later develop other sensitivities besides gluten. But if our gluten sensitivity and leaky gut had been diagnosed early and we had stopped eating gluten we would have healed and not gone on to develop these other problems. After 30 years of being told that you are a hypochondriac and that you need to see a psychiatrist, there was little likelihood that my problems were going to be identified by the medical professionals. The thing that did the damage for me was the gluten intolerance that went unchecked.

The reason that we continue to have malabsorption after giving up gluten is because we have a leaky gut, caused by gluten, which lets through food particles that are too large. The autoimmune system recognizes these large particles as enemy rather than friend and that sets off an autoimmune storm which eventually leads to an intolerance to that food if we keep eating it. So the first thing we have to do is identify the gluten culprit and stop eating it, then heal the leaky gut (not an easy process - I am not even sure mine is healed yet, but then I am an old lady and I had problems for a long time), then we have to identify our other trigger foods and stop eating them, and then we have to wait a while after the leaky gut has healed before we can try eating those foods again. Do you really think that if I still had pain and diarrhea that I would not seek further treatment? I am a lot more pro-active on my medical appointments now and do not let the doctors off the hook. I know I do not have Crohn's or IBD because my bowel is no longer irritable. The symptoms I get from my other intolerances only cause bloating and atrial fibrillation, not pain and diarrhea. And I have not even had had the bloating and a-fib lately because 1. I think my gut is healing, and 2. I am not eating my identified trigger foods.

I just consulted with a nutritionist in August (I have been gluten free since Nov. 07) to try and clear up my intolerances and leaky gut because I was not able to do it on my own. And no, my doctor doesn't have the foggiest clue about all this, she tests me when I ask for certain tests, she prescribes the B12 injections and the Vit. D for me because I asked her to test for them and they were low, and knows I will seek help from her if there is something she can help me with. My rheumatologist does not believe there is any relationship between my psoriatic arthritis and gluten intolerance/celiac, but he does not keep current on the literature so how could he?

And since you don't seem to have read it on the forum before, I feel a million times better off gluten and everyone tells me how much better I look.

[sa1937]

Thank you for writing this. I read the post about people who self diagnose and it's bugged me all day. I always sort of wonder if people with an "official" diagnosis feel like it's more real for them than those of us who had to self diagnose. My mother, myself and my daughter have all tried to figure out what was wrong with us only to be told all the tests were "normal." I'm too tired right now to laundry list all the issues that we had that ALL cleared up gluten free. My faith in doctors has gone way down since going through this whole process. We all feel better, look better, behave better. At this point this is enough for me.

The only reason I'm "officially diagnosed" is that I asked my dr. for a celiac panel. When it came back positive, he was ready to diagnose me based on test results. I asked for a referral to a GI doc because I knew my daughter, who will be 45 next month, was having problems with gluten. How could I expect her to take it seriously if I didn't? She tested positive, too, and skipped the biopsy but went gluten-free based on that. Next step for her is to have her daughter, my granddaughter, tested even though she shows no symptoms. We both suspect that my mother also had celiac and she spent her last years on this earth being totally miserable.

So no, I've never even given it a second thought as to if it feels more "real" than if I had just gone gluten-free without any diagnosis. I applaud people who take it upon themselves to go gluten-free after having so many negative experiences with doctors. I think I am the lucky one to have a doctor who gets it.

[katryn]

I am also have very mild symptoms for Celiac, despite positive bloodwork and a negative biopsy. How much do you worry about cross-contamination from, for example, having a partner who is not gluten free?