JH85

Thank you for your support, I am off to see one specialist tomorrow and one on sept. 14th... I'll keep you posted!

So I've been gluten-free for a tad over 2 months, DF 1.5 months, casein free for 4 weeks and lest we forget Soy free for 4 weeks as well. I also have not eaten ANY spicy foods, been very strict on diet as a whole. Consisting of mainly fruits, veggies, and some meat, mainly chicken. Had a "good" spell for about a week, that was 2 weeks ago, now back to having severe D regardless of what I do or don't eat. I have not strayed from my diet restrictions at all, so I am just totally lost and confused as to what is going on. I have another doctors appt. today at 2:45. If he doesn't suggest it I'm going to request to see a GI..... This is just insane and so frustrating. I also have been told that I may have MS due to a large amount of symptoms I have. I know a lot of you on here have had similar diagnoses and solved it through a gluten-free diet. I certainly hope that is the story in my case. Not sure how much longer I can go with no solid diagnoses or even a 99% diagnoses. Anything would be helpful at this point. I feel more for my wife who has to deal with a severely pissed off husband. I haven't even talked to any of my friends in over a week I've just felt shut in due to not knowing what I can eat and the results of them. the word embarrassing comes to mind but it is so far past that at this point. Its not the diet but the result that comes right now from eating anything and sometimes nothing at all. Nothing seems to be helping and/or getting better. Oh, and the most embarrassing thing is that 4 weeks ago what helped me to realize my casein allergy is that I un-knowingly in jested some and was rewarded with severe D for about 12+ hours, thus producing a Hem. and since the ol' tummy has gone wild again its has not allowed for it to heal. Instead it has gotten worse, the main reason for the doc appt. Its gotten to the point where this morning I admitted to my wife that for the last 2 weeks, every morning I woke up and buried my head in my pillow and screamed because I did wake up and had to go through another day in hell. Well I shall stop ranting now, hope everyones day goes better than mine has so far.

So 2 days later and no news from neurologist with an appt. And of course both doc's offices are closed tomorrow. I live in Central NY and everyone is waiting to see what Irene has in store for the east coast. One more unforeseen occurrence to dampen the mood around here..... Better keep the rum and tequila coming!!

Thanks for your support, I will be more active on here next week I'm sure. I will always need everyones support on here. I can't tell you the amount of times I've googled questions on everything celiac and have been redirected here. There is more than an abundance of knowledge and know how and friendship on these forums.

So as a few here know I had a blood test done that will more than likely be a false negative. I'm also waiting for the Neurologist to call with a date to get MRI'd of course my luck would have it, both my general doc and the neurologist closed early today at 2pm and won't be in the office till monday at 7:30...... Sucks about the blood test being that is going to be a false negative due to me being gluten free for over a month now. Me "glutening up" is out of question due to how violently ill I get with but a taste. My doctor also believes my symptoms of Ataxia and early on-set MS (combination of celiac, bipolar, balance issues, loss of short term memory etc.) So all of these things are on hold till its "convenient" for my doctors. In the mean time I will have to deal with not being "sick" but deal with these other things for at least 3 1/2 days. I broke down last night on the couch with my wife for about an hour or more because after living in the same place for 23 of my short 26 years. I've began to be unable to walk through door ways without running into them. Thankfully I have crazy long arms and the house isn't huge so that I can put a hand on a wall if I lose my balance. Also I've walked up and down my stairs in this house probably 1 million times or more AT LEAST! Now, I must hang onto the hand rails so as not to trip and fall. Did that last night and spilled a glass of sweet tea everywhere ergo the break down. Its nice to know that there are people dealing with the same disease and many side affects that are able to come here and help on another in any way they can. At times I know I think I may not be helping but I realize that we all have strengths and weaknesses and knowledge about different things with this horrible disease. Ones who have not been dealt this hand can help but never truly understand what goes on inside emotionally. I am SO GLAD to have found EVERY ONE that is here, Thank You. <--- The last two I just wanted to use cuz I liked them

So not only did I finally get blood drawn yesterday to get an official diagnoses after most symptoms clearing after going gluten free. My doctor is pretty convinced, as am I, that I also have ataxia which I hear can be brought on by celiacs disease. Also I have been on lithium for about 8 years and as of 3-4 months ago it has been increased and high levels of lithium can also cause Ataxia, as can a lack of b12 which I also have had within the last 3-4 months. I am going to see a neurologist as soon has he calls me that is. To get a look inside to see a) if i actually have anything up there. if its ataxia and c) my doctor says there is a chance it could be early on set MS. :( :( just needed to vent to someone who won't spread it around the tiny town I live in until things are fully understood. Thanks guys

I've been celiac for about 6 years and gluten free about 2 months margaritas, rum and coke, potato based vodka and a beer called Red Bridge made by Anheuser Busch, are the only alcoholic beverages I consume and have never had any problems. The same goes for my mom who was diagnosed and been on a strict diet of gluten free products. The very sight of gluten-free makes her stomach hurt it seems. That being said Sounds like something else got ya.

So I went to my doctor today (finally) about my symptoms he said it sounds just like Celiac. He did a blood test and should be getting back to me shortly. Kind of nervous about this I also discussed with him my in ability to always walk in a straight line and my balance issues which I read something on here about Ataxia that could cause this. He did some tests in his office, which I did not exactly pass with flying colors Waiting now for the neurologist to call me or my doctor with an appointment. Gotta have an MRI done. I hate those things, only had one other done before when I had torn my meniscus in my left knee. Those things are sooooo loud and intimidating lol... Oh well, I will let you guys know my results soon as I get them myself. That is if anyone cares Wish me luck everyone!!

My mother was diagnosed with celiac over 19 years ago.... I too had shown signs of a possible problem with gluten.... that was about 6 years ago.... over the past year maybe two my stomach issues, IBS, Dairy allergy, chronic nausea and every thing under the sun linked to a stomach had gotten extremely bad. I lost a ton of weight due to not being able to keep anything in me. I went to my doctor and asked what he felt was wrong and thankfully he is my mothers doctor as well. So he knew well about my mothers case and sensed a lot of the same symptoms. We then decided to begin a gluten free diet. that was about 2 months ago. Almost all of my issues went away yet some still linger but are under control since adhering to a gluten-free diet. Recently went to see my doctor to see if I should see a GI doctor and he said bluntly.... "I wouldn't but if you want to you can, but after the results you've had while adhering to this strict diet, you'd be dumb to go and spend the money on co-pays and make the insurance peoples pockets swell for them to tell you something that either you already know or that they need to run more tests which will lead to more co-pays, pain, sickness from eating gluten and the time spent away from home,work or where ever." Now of course that was in my situation where adhering to a STRICT gluten-free diet with no "cheating" as hard as it is. Basically if it was helping at all.... give it some more time without cheating at all which will just send you back down the mountain so to speak....... Hope you find what works for you and helps you in your situation.

From reading the symptoms of Ataxia it seems like I may suffer from Ataxia as well. The reason this topic caught my eye is that I am an avid golfer, sometimes 4 times or more a week. As of late I'd say about the past two months I have been playing worse than normal This due to the fact on the most even of lies I swing at my normal speed, stance everything, but I have been falling out of my stance on my follow through. Or in some cases, I take extremely deep divots out of the fairway because I'm either falling towards the ball or away from it. Really strange because I have NEVER had this feeling. Went to the pro at my club and he couldn't find a dang thing wrong with my stance set up or swing speed. Drives me insane!!! I'm by no means a Scratch golfer My handicap before this started was a solid 12.... since.... a recreational golfers 18-20+ absolutely in excusable in my book lol........... anywho Anyone out there think this may be related??

SO I found out through elimination of dairy in my diet along with gluten in every way shape and form. I then found a product called Digestive Advantage Lactose Defense Formula. I have in the past taken Latose pills when I would be ingesting any form of dairy and it helped to an extent. I then found this product and after reading the label it said "contains milk" however from researching it, the "dairy" was minimal and simply for building up a "tolerance" so I gave it a shot. Took the dose as instructed in the morning at about 9:30am. I felt fine until about 5pm I became very sick to my stomach and got severe D. This continued until about 1am when I was finally able to lie down and pass out. Upon awaking around 8am I went immediately down stairs and read the label again. In fine print it also said "may contain traces of Casein" I've heard of Casein before but wasn't sure and so I did some research on these boards and found out that many Celiacs have a sensitivity to Casein as well. I know its 100% my fault, however now I have had to deal with a very severe Hem. that is 4 days with 0 improvement So the moral of this story I guess is I've learned to research EVERYTHING due to this horrible disease and I am SOO happy to have found this web site and a community of fellow Celiacs I have lots of questions, comments and so on and so on. Thanks

I'm new to this website and forum, however my mother has been celiac for 19 years and I have had complications from diets showing that I more than likely have been celiac since I was 20 (6 years ago) Not sure what all of those symptoms point to but I do know that it will take much longer than a few days, weeks and usually months to have a notable change in symptoms. The villi in your GI tract can take a very long time to heal depending upon the damage done. You mentioned Raynauds, my wife has a few auto-immune diseases such as Raynauds caused by Scleroderma. As with many other Auto-Immune diseases through research they can be not always HEALED but can slow down the advancement of such horrible diseases. My wife tries ever so hard to stick to a gluten-free diet but with her job which requires a lot of travel either in state or out sometimes, its not always easy. When she does "cheat" her stomach tells her. My suggestion would be to stick with a STRICT gluten free diet. Its very difficult and never really gets any easier. Do research on EVRYTHING you eat and do not "cheat" this will just cause you to spiral back to where you started. Lack of a better word its gonna suck, for me I have only been strict for about a month. Not all symptoms have been eliminated but the vast majority have subsided. Informing family and friends will help you along the way, if those closest to you don't know you are trying this that will make it that much harder. There is plenty of sources to refer to and research that has been done and this forum is a great place to start. Sorry for running on here, just hope that it helped a tiny bit.

Didn't know that Dove Chocolate had a hotline lol .... you're right it must be for very serious chocolate eaters! I might need a "Back Away from the Chocolate" hotline No seriously if you find one hook me up

Hello, this is my first time posting anything about this horrible disease. I'm 26 years old and had a strong feeling about 8 years ago that I may as well be celiac. I went on and off a gluten-free diet but never stuck with it (even though it helped all symptoms I had) I pretty much defined the whole "young and dumb" saying. Over the last 3 months it has become much worse than ever! So with the encouragement of my wife (basically it was her foot up my you know what) and knowledge of the disease my mother has, I have been completely gluten-free and DF for 2 1/2 weeks. Might sound lame but its the longest I have ever stuck with it. I have never been OFFICIALLY diagnosed however on a gluten-free diet I have no stomach pains or constant D. I am SOOOOOO scared to go to the GI i'm delaying it as much as possible. I'm just nervous that I don't know exactly what will take place. I know times and technology have changed in the past 18 years since my moms diagnoses, but I'm still shaking in my boots so to speak. Any advice or words of wisdom out there??