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    Do you have questions about celiac disease or the gluten-free diet?

kmrinmd

Hoping This Is The Answer I Have Been Looking For...

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Hi all-

I must first say I am so impressed by the genuine concern and caring on this board. If anything, that alone will help me feel a bit better.

I wanted to take a minute, as I'm sure all newbies do, to run down my symptoms for your opinions. First of all I am a 24 YO woman, healthy in most respects, and a fairly average weight (although I have gained about 15 lbs recently). As a child, I was ALWAYS the one with a "tummy ache" and missed plenty of school because of it as well as made many trips to the doctor where my parents were told I just had a weak stomach. I got car sick a lot and had generally low energy levels. I was also very anxious ever since I can remember, and that has continued into my adult life (I am 24). I was even on Paxil for about a year, but have since gotten my panic attacks under control (I don't really like to be on medication, other than natural herbal remedies). Another thing I have always complained of is feeling overwhelmingly tired after meals. I have a difficult time eating lunch at work because many times I will feel the need to sleep afterward, or will feel very "foggy/haxy". My boyfriend and I always eat dinner in our living room, and as soon as we eat I lay down on the couch to rest/watch tv. About 50% of the time I fall asleep within the hour, while my food is starting to digest. Well, most of my childhood stomach issues subsided during my teenage years, aside from the fatigue after eating, and I never thought any of those symptoms were linked nor did I feel they really interfered in my life in any way.

Well, about 6 months ago, new, more persistant symptoms arose. I had been on the famous no-carb diet for about a year, and had just jumped right off that band wagon and back to eating carbs in my normal manner. It seems right after that is when the GI symptoms came along. I became FAR more gas-y than normal, as in multiple times a day, and it smelled much stronger than I was used to. Also my bowels started to be all over the place, with many small pieces of floating, "air-y looking", stool being the most common. The most annoying symptom however is the abdominal discomfort. It is concentrated mostly on my right half of my body in the abdominal region, although sometimes the cramping will be all over the lower stomach. Sometimes it is a general pain to the right of my belly button, that feels like a tightness, and other times it will be up higher, almost to my chest. I feel very full and heavy in my stomach most of the time. The worst pain is the one in my right side right near the bottom of my rib cage. It feels like a spasm or a tearing and is almost a daily occurance. Sometimes the pain will radiate to my lower back on the right side. The weird thing is, it seems to feel MUCH better, if not totally absent, when I lay down slightly curled up, on my right side. Sitting seems to be the worst.

It would be very helpful to me if you could tell me how common these symptoms are to Celiacs. It's difficult to say if they all fit together without hearing form others since the symptom set is so very broad. I do plan to try out the gluten free diet and see if this works for me as I see doctor's as a last resort (no offense, I know they are there to help).

Thank-you for your input.

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Hi, and welcome to these boards.

Your childhood symptoms sound almost exactly the same as mine. Plus awful backaches. The doctors tried for a little while to figure it out and then gave up on me. They claimed I had a low pain threshold, and neuralgies and other copouts, rather than saying they didn't know and would keep looking.

The awful pain in your right side could be your gallbladder (gallbladder disease is extremely common for people with celiac disease). I suggest you go and have that checked out, despite not liking doctors (I only see them when I have to myself).

But yes, all your symptoms, especially your stomach problems and getting awfully sleepy after eating could be celiac disease, or gluten intolerance.

Since the gluten-free diet can't hurt, and would do a lot of good for the majority of people, I think trying it would be a great idea. It could possibly solve all your health problems (still have that gallbladder checked, though).

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Thank-you for your response. It's amazing how so many seemingly unrelated symptoms can all fall into place after so many years. I've always just thought this was the way my body functioned and that was that. I do plan to go to the doctor within the next month...really as soon as I can take a day off of work. It's always scary to find out something is wrong with you, but knowing is better than not knowing I think. Until then, I will start the gluten free diet and see what happens. I have read it can effect certain tests, but I need to seek some relief right now. I also forgot to mention that I drink coffee daily and smoke about 8-10 cigarettes a day (have for the past 7 years). Neither of these seemed to directly bring on symptoms but I'm sure they are aggravating the situation if I do infact have Celiac's, so I will definitely cut out the coffee immediately and begin the process of quitting smoking which I have wanted to do for some time. I wanted to know if anyone else saw symptoms manifest after following a no-carb diet, only to return to eating carbs????

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I don't believe coffee is a problem, unless you drink more than two cups a day. I heard that smoking moderately helps with celiac disease symptoms! Still, it is a good idea to stop.

If you plan on having official celiac disease testing done, you can't go on a gluten-free diet now. Because you would get false negatives if you have it. There is really no point to test for celiac disease if you try the diet now. Only if you don't care what tests say and are happy with self-diagnosis is it advisable to go gluten-free now. I did that, but it isn't for everybody.

Yes, people have done no or low carb diets and felt much better, and got really sick when returning to eating gluten. It is the same with going purposely gluten-free. It gives your intestines a chance to heal, and you'll have a much worse reaction when reintroducing gluten.

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I do not need an official diagnosis to feel better. I just want to actually feel better, so I will start the diet. I figure if it works, it works, and that must be what is going on. However, I can understand why some people prefer the solid proof. If I do not feel like I am getting better, or I get worse, or the side pain doesn't go away, I will certainly then go to the doctor and see what they can do. Good to know about the coffee and the smoking...I should really quit smoking but at least I don't need to feel like that is what I am doing to make myself sick.

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I had a similar experience as you with the low carb diets. I went on South Beach and felt wonderful, better than I had in a long time, and then I went to Phase3 and tried to eat whole wheat bread, and WHAM back to feel sick again. That's when I first suspected wheat was a problem. When you read all the South Beach testimonials, I can't help but wonder if most of those people are gluten sensitive. So many testimonials report feeling better and having more energy, and a few talk about still avoiding bread even though they have reached their goal weight and could have it.

So I don't think your experience is unusual at all.

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Hi kmrinmd, and welcome,

You sound a lot like me when I was little too. Childhood hx of car sickness (always & really bad), general low energy, and anxiousness (panic attacks, etc.). In my 20's, the lower tummy cramping, and a few other things.

I'm not diagnosed Celiac because I was gluten-free before I even knew about it. I stopped eating wheat while I was on an elimination diet to try to find possible food allergies.

It sounds to me like it would be worth a shot for you, but, I would caution you to really think about whether you may want to get tested first. I'm not saying you shouldn't go for it. I'm just thinking you may want to consider what it will mean for you. I've accepted that I won't have an official diagnosis of Celiac, but for a year now, I've wondered. All I know is that these things make me sick in one way or another. If you can live with the fact that all you know is that wheat, barley, rye, etc. are bad for you, a diagnosis may not be necessary. But, picture yourself explaining your food issues to people (especially when you're out to dinner or eating at their houses) and ask yourself if you need a reason (diagnosis) when people ask you why.

I know that for me, a diagnosis would probably make it a little easier. You'd be surprised, when you get started on this, how often it comes up in conversation and how often people just don't understand. At this point, I could get gene testing, but there are some snags with that.

Regardless, I hope you get all your answers and that things work out well for you.

take care,

k

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sneezydiva-

Thanks so much for sharing your diet/symptom correlation. It helps so much to know I am not alone, and not crazy :)

fajitas-

I was the car sick queen as a child. My mom used to give me ginger before long car rides to settle my stomach. Infact I still get motion sick in some instances...on fast moving elevators and on the metro during my commute. Thanks for the advice on getting a diagnosis. I am pretty sure I am ok with not having one. I have never had a problem explaining myself to people, or not explaining if it's none of their business. Also, if the diet irradicates my symptoms I would feel very confidant that Celiac's is my problem, therefore not having any reason not to tell people it's Celiacs if only to shut them up :) Funny thing, I go by "K" also...my name is Karen.

Wow, this diet is a bit complicated. I am the type to need something cut and dry (IE: this is what you can do, this is what you can't do). I have found some helpful websites (this one especially), but it's not as easy as I'd hoped (that's the lazy me coming out). It took a while to figure out what we had in the house that I could eat for dinner tonight, but it was delicious and comfortably filling when we did. We ate about an hour ago and I don't have that tired feeling or abdominal pain at the moment, though I am craving dessert at the moment and we don't have anything acceptable. I know it's a long road to letting your body heal and I can't expect results overnight, but just the fact that I am awake right now is encouraging to me. I am very excited about eating gluten free, and really hope this works. It would relieve a lifetime of ailments for me and I can't imagine the positive impact on my life if I were free of stomach problems and fatigue. Any suggestions on good resources for diet guidelines would be appreciated! Thanks so much to everyone already.

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Start out small and simple, that way you dont get overwelmed all at once, this diet takes alot of work at first figuring out label reading etc so my motto is "kiss" (keep it simple silly) plain meat with herbs for flavoring plain veggies but dont hesitate to expiriment with the herbs its amazing what you can do!

Explore this forum and other places for valuble info not just on the condition but products as well as recipes this will make your shopping trip much easier, many here when they get a responce from a company post it here for everyone, this is a great timesaver.

Dont be afraid to ask anything, we are all here to help and while we didnt spend all those years in med school many of us had to learn the intricate needs of a celiac diet first hand and from major hours of research.

I myself am self dx'ed as my dr wouldn't even concider it as my problem, he was "sure" it was something else, i gave him the boot and started treating myself and must say my first attempt failed due to lack of knowledge but the current attempt is doing wonders thanks to this forum mostly and all the information it contains.

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Welcome!

I was misdiagnosed for over 45 years ( read my siggie line) I just accepted the intitial diagnosis of IBS and was never offered any testing over the years

Now I am gluten-free so many things makde sense and do I know it when I am glutened now, still recovering from an accidental glutening last Friday night

If you are happy not to have an endoscopy then go gluten-free and as others said keep it simple, lots of fresh fruit veggies no processed/packaged stuff to begin with. Learn to read labels, check shampoos/conditioners/skin care/toothpaste/vitamins/medications. Buy new chopping boards and wooden spoons and a new toaster kept exclusivley for gluten-free bread if there are others in the house, (cross contamination issues)

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Start out small and simple, that way you dont get overwelmed all at once, this diet takes alot of work at first figuring out label reading etc so my motto is "kiss" (keep it simple silly) plain meat with herbs for flavoring plain veggies but dont hesitate to expiriment with the herbs its amazing what you can do!

Explore this forum and other places for valuble info not just on the condition but products as well as recipes this will make your shopping trip much easier, many here when they get a responce from a company post it here for everyone, this is a great timesaver.

Dont be afraid to ask anything, we are all here to help and while we didnt spend all those years in med school many of us had to learn the intricate needs of a celiac diet first hand and from major hours of research.

I myself am self dx'ed as my dr wouldn't even concider it as my problem, he was "sure" it was something else, i gave him the boot and started treating myself and must say my first attempt failed due to lack of knowledge but the current attempt is doing wonders thanks to this forum mostly and all the information it contains.

I think that's excellent advice, and the easiest to follow to make sure I'm not getting any hidden gluten. Besides, I have always been in favor of non-processed foods in general (although I certainly still ate enough of them!). I have decided to go off dairy too, for now. Last night, my b/f made me steak (no marinade), steamed fresh veggies, and a salad with balsamic vinegar. That is all gluten free correct?

I absolutely LOVE herbs for flavoring foods. Infact, I think I am getting the Aerogarden for Christmas :) I also like to take herbs medicinally, but I need to go through all my products (hair care, soap, moisturizer, toothpaste, etc.) tonight to see what does and doesn't contain gluten. I am thinking the capsules for my herbs probably do, but I also have pure liquid herbs that probably don't. Will have to check though. For the longest time St. John's Wort was the only thing that eased my anxiety, other than being on traditional meds, which I don't prefer.

I do have a question, although the answer is probably obvious. Well, I was shocked this morning to wake up without any abdominal pain, but I'll take what I can get so I was very happy getting ready for work this morning. That is, until I was on a very crowded Metro and a very angry man boarding the train (and having some difficultly) screamed and cursed at those of us by the door to move out of his way. I could feel my heart rate speed up as I was not expecting his reaction. A minute later, like clockwork, I got abdominal pains. So, my guess would be that like virtually everything in your body, Celiac symptoms are worsened by stress/anxiety? Is that true? Luckily, the intense pain only lasted a few minutes and then faded back to a dull pain. It is about gone now, but still...darn him for ruining my morning! :P

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Welcome!

I was misdiagnosed for over 45 years ( read my siggie line) I just accepted the intitial diagnosis of IBS and was never offered any testing over the years

Now I am gluten-free so many things makde sense and do I know it when I am glutened now, still recovering from an accidental glutening last Friday night

If you are happy not to have an endoscopy then go gluten-free and as others said keep it simple, lots of fresh fruit veggies no processed/packaged stuff to begin with. Learn to read labels, check shampoos/conditioners/skin care/toothpaste/vitamins/medications. Buy new chopping boards and wooden spoons and a new toaster kept exclusivley for gluten-free bread if there are others in the house, (cross contamination issues)

I never would have thought to replace the toaster or wooden spoons! Thanks so much for the advice.

Also, I find it very interesting you mention the generations of auto-immune related illness in your family. My father was a type 1 diabetic. My mother has lupus. Is there a genetic link that predisposes you for something auto immune related?

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We're new to this too, my husband, whose user name etc. this is, has been told by 2 docs, one oncology/hematology expert and one gastroenterologist, that he most likely has celiac's, his biopsy is tomorrow. He also has Grave's Disease, and an undiagnosed fertility problem. Related? I'm guessing so. His mother is diabetic too. His only "symptom" was anemia. He ended up in the hospital in August for severe anemia, had a colonoscopy, which was normal, and an endoscopy, which the surgeon said showed some gastritis and ulcers. They said that's where his "blood loss" was coming from. I didn't believe it then and I don't believe it now. While Celiac's is certainly no piece of cake, (ha ha I kill me) it's better than the diseases we had thought of!! As he was showing no signs of blood loss, we assumed it was that he was not making blood, which could mean lymphoma, leukemia, or something. Our skepticism of the ulcer diagnosis is what sent us to the blood specialist, who noticed a low folic acid level as well and FINALLY talked to the surgeon who did the endoscopy and didn't believe the ulcer diagoses either. He sent us to the gastroenterologist, who agreed with his diagnosis of Celiac's. Sorry to go on so long, but it's been a long process! And now that he's found this forum, and reads about all the symptoms that he always thought were just his OWN quirks, e.g. can't sleep, ears ring, no memory; may just be caused by his celiac, which causes us to wonder how long he's had this!? We found out about his infertility in 1983, and his Grave's Disease in 1990!!

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We're new to this too, my husband, whose user name etc. this is, has been told by 2 docs, one oncology/hematology expert and one gastroenterologist, that he most likely has celiac's, his biopsy is tomorrow. He also has Grave's Disease, and an undiagnosed fertility problem. Related? I'm guessing so. His mother is diabetic too. His only "symptom" was anemia. He ended up in the hospital in August for severe anemia, had a colonoscopy, which was normal, and an endoscopy, which the surgeon said showed some gastritis and ulcers. They said that's where his "blood loss" was coming from. I didn't believe it then and I don't believe it now. While Celiac's is certainly no piece of cake, (ha ha I kill me) it's better than the diseases we had thought of!! As he was showing no signs of blood loss, we assumed it was that he was not making blood, which could mean lymphoma, leukemia, or something. Our skepticism of the ulcer diagnosis is what sent us to the blood specialist, who noticed a low folic acid level as well and FINALLY talked to the surgeon who did the endoscopy and didn't believe the ulcer diagoses either. He sent us to the gastroenterologist, who agreed with his diagnosis of Celiac's. Sorry to go on so long, but it's been a long process! And now that he's found this forum, and reads about all the symptoms that he always thought were just his OWN quirks, e.g. can't sleep, ears ring, no memory; may just be caused by his celiac, which causes us to wonder how long he's had this!? We found out about his infertility in 1983, and his Grave's Disease in 1990!!

Good luck to your husband, and to you, tomorrow. My mother is also severly anemic and has had to undergo a procedure to re-ignite her bone marrow and make it function again. These auto immune diseases have a way of flowing through families it seems. Remeber that even if the biopsy comes back negative that does not mean your husband does not have Celiac's. I am not one for doctors so I began the diet yesterday on my own. Must say I feel an improvement already, but I'm not putting the cart before the horse here. The abdominal pain seems less intense and less frequent and the fatigue after eating has eased also. If I can see this much improvement (I would have taken ANY improvement) in 24 hours, I can't imagine how I will feel in a week, a month, a year! It's so exciting and there is hope. I'm sure if your husband does have Celiac's he's had it since birth...It could have remained latent in his system until now or he could have written all those back aches and stomach aches as a child to just being normal for his body. Keep us updated.

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Just wanted to add that I have also always had dental issues. My dentist told my mom when I was a kid that I was born with soft enamel and to expect a lot of cavities and crowns in my future. I am still constantly having dental work done to rid cavities and such (and I'm one that even flosses on a fairly regular basis!).

Also, I had pad thai and pho today. I am not sure if the pad thai had gluten because I did get abdonimal pain and some sleepiness after lunch (I planned to bring lunch to work so I'd know it was gluten free but that didn't happen), but it wasn't nearly as severe as usual so perhaps it's risidual pain that can be expected while my insides heal. Had pho for dinner....ate too much and feel full...but no abdominal pain or tiredness. I'm very thankful for rice noodles today! DBF is so sweet....he went out and bought rice noodles and broth so I will always have something to eat that is gluten free while I am testing this out.

I asked earlier today, but I'm going to ask again....Do you notice that symptoms flare up more when under stress/anxiety? I image so, since everything in the body is effected by stress and Celiacs tend to be stressed individuals, but thought I'd ask. Refer to post somewhere above for my story about this morning.

Some other things I have that may possibly be Celiac related....the roof of my mouth sometimes gets tender to the touch of my tongue, tingling feet, cold sores, sore bum (from all the pooping I think)...I'm sure there are more. (I'm really not a complainer....Most of the symptoms I have not said word one about EVER because I thought I'd just live with them, but to think they could ALL be related is just incredible to me. To think...maybe I'm not a freak of nature afterall!

Have a great night everyone!

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Not feeling great today :(

Actually, my stomach feels fine now, but my nerves are shot and all I want to do is cry and sleep. Although it's a good thing I am at work where I can be somewhat productive and somewhat take my mind off it. I woke up this morning with some slight back pain (FYI: had 3 teaspoons of pure vanilla icecream before bed) which subsided rather quickly. Then I had the abdominal/side pains later this morning (FYI: had a cup of coffee, with milk and splenda). I'm thinking cutting out the dairy is a must at this point. I had a banana while having the pains and the pain soon subsided (for the most part, and are now totally gone). I did have 2 BM at work today...the first was floaty/airy and did not feel complete. The second was very little of the same, in odd shapes. I have some fresh steamed white rice that I made last night, but I just have no appetite at this point. I'm afraid everything I eat is going to hurt me :( I just so badly want to feel healthy and want an answer (without a doctor if at all possible). I have been sharing all of this with my mom, and she really wants me to go to the doctor...she just hates to hear me so upset and feeling so crappy. I don't know. I can't take off work for at least a few weeks anyway, so until then I will stick to the gluten-free and then decide where to go from there.

*just exhausted*....sorry for all the complaining!

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