pchick

My wife was just diagnosed with celiac disease and having found this site has been great... I hope to become informed and be able to help her with this as much as possible.

I am just now beginning to comprehend this disease and what's ahead for her and am glad and very hopeful that she can beat this (or at least be able to live with it ... knowing is half the battle). Several posts on here have brought me to tears as there's nothing like reading real life stories of people/family/friends coping with celiac disease to make something that was foreign to me a couple of days ago seem very real. I am very grateful to all of you and hopeful that the collective thoughts and energy as they're being put in writing via this forum will help my wife in one form or another.

I feel the same way... I was diagnosed "severe gluten intolerant" by my ND in July 09 so it's still fairly new to me too. And it's hard... especially the holidays! Since I found out about my intolerance, I've been really good at avoiding all gluten, and cooking and baking all my food from whole foods with lots of veggies and no sugar. I was feeling about 50% percent better overnight just from the diet change... then I was getting sick and tired a lot and found out my vitamin D and B and iron levels were far too low, so now I'm taking a bunch of different suppliments and am feeling GREAT!!

My little rant of late is this: My hubby, who is very supportive in most ways, doesn't think using flour around me makes any difference. I honestly didn't know for sure myself until last week when we decided to bake a bunch of goodies to give to friends as gifts. I was so good and didn't eat any of it or touch my mouth or eyes or anything while I was baking (which is tough since I usually eat as much raw batter as finished product). I made myself a gluten-free blueberry tart and some gluten-free fudge to snack on so I wouldn't be tempted.

Imagine my dismay the next day waking stiff all over and nauseous. I got through most of the day before I started vomiting (I have BAD constipation so when I get "glutened" I get real sick and bloated and then everything in my tummy goes the other way). I spent 12 hours being sick like that and now it's 3 days later and I feel like I'm 95 years old ~ all my joints are popping and hurting, my head is pounding, my face broke out, my tongue swelled up, my throat hurts, I'm super depressed, and am SO TIRED, all my muscles ache and some are cramping... right back to how I was before the diet change.

I'm trying to stay positive and the one good thing that came out of all this is that my husband now takes me seriously and has trashed all flours and bread, even the goodies we made, out of the house. The thing is even though this food NEVER made me so sick before, so I'm a little surprised as well. Nothing like an experience like this to KNOW I will never intentionally eat or even be around flour and other glutens if I can help it.

So good luck to everyone getting through the holidays ~ it can be so hard. Especially when people think you're making it up (like many of my "friends") I'm SO glad to have this forum to read or write on when I need a little support. I am very appreciative... THANK YOU

wow ~ everyday I'm learning something new here! This is a great forum.

Anyway, I too am TIRED all the time.... I've been told my adrenal function is low (by my acupuncturist) and my ND told me my DHEA/Cortisol levels are unbalanced. But that doesn't really explain much.

I had a very stressful/traumatic lifestyle till about 10 years ago ~ Now I've got my life somewhat together and of course, NOW my health seems to be falling apart.

I'm getting a good mutli-vitamin on Monday... and I'm hoping that taking that will help in my exhaustion, light sensitivity, dizziness etc.

Hopefully someday I'll be able to get on this forum and GIVE good advice instead of always NEEDING it. Thanks to all who are writing ~ it really helps

sorry to hear some of you are experiencing the same thing... but I'm glad to hear I'm not the only one. I'm motivated to keep it up in the diet dept. in hopes in a few months I'll be having all sorts of energy! Keep me posted ~ let me know when you all start feeling better

as far as insomnia... I stay up late because I can't fall asleep easily ~ I usually fall asleep between 2 and 4am, but once I fall asleep I'm out until 10 the next day (with a few bathroom breaks). Lately, I've also been taking naps during the day.

If I know I'll get better, I can do this for a while.

Thanks Amyleigh, I just ordered gluten free multi vitamins... should get here Monday. Doc put me on enzymes and probiotics, and something to facilitate iron permeability.

I've been taking EmergenC's when I feel woozy... and I think that helps. I know the vitamins will help.

I was wondering if anyone has gone through the same thing?

My test results were negative, but my IgA count was extremely low, so they wouldn't read positive even if I had celiac for sure.

current test results:

Triglycerides: 480

Blood sugar: 111

borderline anemic

CS1: +3 candida, +1 saprophytic fungi

GP2: no parasites

MB2 Total intestinal SIgA: <11 (normal range is 400-880)

MB3 Intestinal lysozyme: 4 (normal is 6)

MB4 Alph Anti-Chymotrypsin: <14 (normal is <60)

FG1 Chymotrypsin: <3 (normal is >9)

no allergy to milk, soy, egg

F14 Gliadin Ab SIgA: 7 negative

Because of this I went gluten free 3 weeks ago and so much is going better. My heartburn has stopped, I'm becoming more regular , I have less abdominal pain and a lot less bloated. My skin has almost cleared up completely (first time ever) and I'm thinking much more clearly so I'm having positive response to the diet.

The thing is though, for the last few days I've been VERY tired again. All I want to do is sleep, it's hard to keep moving sometimes and so I've been taking too many naps (and still not feeling rested).

So I'm wondering if anyone else has this? Could it be a healing response (I've been sick for a long time and now have leaky gut)? It almost feels like a detox ~ kind of a heaviness in the body and head. I don't know... maybe I was "glutened" but I don't think so. Everything else is holding fine - still regular and such, but I'm just really, really tired... and I have a strange tingling sensation all over, including my tongue.

Just looking for answers or someone who is experiencing the same thing ~ I'm so confused... and I really just want to feel normal for a little while.

AND...my kids get them. My daughter also has geographical tongue. I had NEVER seen or heard of this until my daughter was diagnosed with it. I read somewhere that it's a symptom of celiac disease.

I had this too when I was a kid ~ no one thought anything of it. I also came down with something called trenchmouth right after I had chickenpox in second grade... it lasted for 3 weeks ~ terrible thing, it was like my mouth was a big open sore.

Sorry, I don't even know if I have celiacs ... I'm like you, everything I read about it is like "OMG... I have that too!! My stool samples came back negative, but was still diagnosed gluten intolerant due to extremely low levels of IgA.

I'm also overweight and didn't think this could be my problem because everyone else who has it (like my sister) can't gain weight very easily at all. It's almost as sad as not being able to lose weight.

Good luck with your diagnosis... and even if it doesn't come out positive, I would recommend following a gluten free diet anyway. It's helped me IMMENSELY so far.

Thanks Korwyn!

That is great information. I've been trying to decide if I should go in for a biopsy... but I don't have insurance ~ and if it comes up negative I would be a little upset for having spent so much money. And it sounds like having low serum IgA could affect the outcome. Plus dealing with it is the same... have to avoid gluten.

I've been searching for answers for about 12 years... reading these posts here make me feel I'm in the right neighborhood. I just wish this all would be easier to diagnose and understand.

Anyways, the curious thing about the blood test was that my IgA levels were very low (10 whereas the normal range is 70-400). I know this can affect the acuracy of the results. I'm thinking about doing the Enterolab stool test.

Hi ~ I'm trying hard to figure out what's wrong with me, and what you are describing is sounding too familiar. I was "diagnosed" gluten intolerant... then did some research and now I want to know what exactly that means. I don't have $$ for biopsy to know if I have celiacs... but that doesn't matter to me as much as a mis-diagnosis.

I just got copies of my lab work from my naturopath, and he said I was gluten intolerant since birth and I should avoid gluten for life. But when I look at the actual lab results ~ the F14 Giladin SIgA tested negative 7. That just doesn't sound right.

My labs were as follows:

CS1: +3 candida, +1 saprophytic fungi

GP2: no parasites

MB2 Total intestinal SIgA: <11 (normal range is 400-880)

MB3 Intestinal lysozyme: 4 (normal is 6)

MB4 Alph Anti-Chymotrypsin: <14 (normal is <60)

FG1 Chymotrypsin: <3 (normal is >9)

no allergy to milk, soy, egg

F14 Gliadin Ab SIgA: 7 negative

I feel 100 times better on a grain free /sugar free diet, but I want to make sure I'm not overlooking something... and I'd like to know if anyone else had low chymotrypsin levels and what that means for you. I just want to make sure this is the right diagnosis... I don't want to end up with pancreatic problems (or maybe I have them already )

wow ~ some people are terribly selfish!

I'm going to thank my wonderfully supportive husband right now! We've been together 12 years, all the while my health and mental wellness was going down the drain. The last few years I don't even go out with him due to my severe anxiety and possible panic attacks besides just feeling crappy. But he's always been there for me and never called me lazy or worthless or hypochondriac like my parents (and some friends) did.

Now I know what's going on and the food choices are making a difference ~ and we are BOTH excited for my health. I'm so glad he was there for me all along!

great news jststric! I like the idea of my gut healing quickly I AM feeling better already... my doctor is a naturopath/MD and put me on probiotics, enzymes, and he also wants me to take 1 teaspoon of apple cider vinegar in water 15 mins before eating. I'm not sure what the apple cider vinegar does... I'll have to ask him to be more specific, but between that and no grains/sugars... this is working.

it's REALLY REALLY nice not having heartburn all the time too! sometimes you don't even know how much it's really bothering you till it's gone!!

I'll check out kirkman labs ~ I need to get a multi-vitamin too

Hi All,

I'm newer here, was diagnosed 2 weeks ago with Gluten Intolerance with Leaky Gut by my Naturopath. He said since I'm so super sensitive right now, to avoid all grains and sugars (except honey occasionally).

Boy ~ it's really helping a lot... I feel SO MUCH BETTER already!!!! BUT: I don't know much about the "leaky gut" thing. Specifically, how long does it take to heal? There are so many gluten-free foods out there with rice and other grains that I'm excited to try. I'm afraid tho because I'm feeling so good, I don't want to mess it up... so I'm wondering how long before I should give those products a try.

Also... does anyone suffer from an intense burning sensation in the low low back? This pain has mellowed out for me with the gluten-free diet... I'm imagining pieces of food slipping out through the small intestine and just hanging out down there rotting and creating gasses ~ could very well be the reason for the low back burn! I would love to hear if anyone else has that.

I have to say, it's kind of exciting reading all the boards here and seeing all these symptoms that I've had my whole life talked about by so many people. I thought (was told for years) that these symptoms were all in my head!!

I was just diagnosed gluten intolerant... but 2 weeks before that diagnosis, I started a low carb diet to lose weight. When I found out about the GI, I was excited to try a gluten-free brownie after 2 weeks of being "good". I got immediate heartburn and it's lasted 3 days so far. So I've decided to cut grains altogether... and sugar too. (except natural sugars in fruit).

Thanks DarlinDeb for sharing... I think this thread has really helped me realize all people are different, and some of us really don't need grains at all. I'm trying to stay positive, and motivated to learn a new way of cooking, I have my family behind me too (they are tired of me being sick all the time)... but it's all so new. I feel like I need to take a month off just to read and do some recipe testing.

I feel like a nimrod sometimes for not knowing more about this before... and how hard it is for people with food sensitivities. I guess we all learn sooner or later... just wish it had been sooner before the leaky gut started!

before finding out I was gluten intolerant, I had steady heartburn for years. In fact it was getting so bad I was waking up with reflux and vomiting a couple times a night.

I've been trying to be gluten free for the last 3 weeks ~ I was feeling great until just a few days ago and I've been getting heartburn again. I have to triple check my diet to see what it could be.

anyway... the best thing I've found is a tablespoon of baking soda in a mug of hot water. I drink it so often, I've grown used to the taste. For me it works better than any OTC antacid I've tried. I haven't tried any prescription meds cuz I don't have insurance, so I avoid going to the doctor unless necessary.

Two. Whoever told the original poster not to drink water with meals ought to be taken out to the back forty and left there to rot. What rubbish.

DRINK WATER OR YOUR GUTS DON'T WORK. drink water. 6 to 8 glasses a day. Nice, lukewarm, room temperature water.

My ND told me the exact same thing: no water during meals or 30 mins before or after. Your body needs the digestive enzymes to break down the food and get nutrients. If you drink water you rinse those enzymes out before digestion, and more nutrients are lost. But it IS TRUE you DO need your water ~ even tho I don't drink with meals, I still try to get 96oz a day.

Nightshade veggies are: potatoes, tomatoes, peppers, eggplant and okra ~ I have to avoid these too otherwise my joints hurt A LOT.

ND's are very different than MD's and I find they have much more REAL experience with dealing with everyday nutrition to help with this.

I should add here that he told me if I just lost weight my indigestion would clear up, because being overweight means when I lay down it presses into my stomach which causes the reflux (that he just said he wasn't convinced I had).

I had the same problem! Every western doctor I went to told me to lose weight and/or go on antidepressants, that I was overweight and therefore the pain I feel couldn't really be real.

Where was it written that overweight people are hypochondriacs?? Why can't they just do the tests instead of making you feel like it's all your fault.

I'm 40 now, always been overweight and just now (3 weeks ago) I was diagnosed... after YEARS of being told to go on diets (which I did and gained weight on) and exercise (which I do more than my skinny friends).

Since cutting the gluten a few weeks ago I've lost 7 pounds! and I feel SO MUCH BETTER! I even feel like getting out of bed in the mornings now so happy!

Good luck with everything!!

It's always interesting to me how the symptoms vary so greatly with celic patients. I was wondering what were your personal experiences prior to going gluten-free in terms of abdominal pain/discomfort? Was it constant? Did it come and go? What did it feel like? Where in your abdomen did you feel it?

Hi ~ I don't have insurance either... that's why I haven't been to see a doctor in a long time. That is until recently. I've always had tummy aches and was nauseas as a kid all the time. I went through a rough period where I was homeless... and pregnant. (1990 - long story) But that is when a lot of my symptoms started.

I had massive abdominal pain as well as dizziness, and blackouts ~ I had to go to the emergency room where they removed my gall bladder in 2000. Since then, I've been having other symptoms that I've been trying to self diagnose.

I have a lot of pain around my liver, especially where my gall bladder used to be, I also have an occasional pain in my stomach (right below ribcage) where it feels like someone kicked me hard and I can't even stand up straight for a few days. I have a lot of tenderness over my spleen (left upper ab). My lower belly bloats and becomes hard sometimes, and has pain if touched. I also have this INTENSE burning pain in my very low back, almost my butt area. A couple years ago I had a few "attacks" of some sort... everytime I ate anything it felt like the most intense pain I've ever had... almost like labor. The pain would come and go like contractions and by the third day of this I was having severe panic attacks.

I went to an acupuncturist who was able to relieve the pain immediately. I've been seeing him for 1.5 years now 2x a week and he helps immensely with the pain. Unfortunately he couldn't diagnose anything.

Between the abdominal pain and all my other symptoms we finally decided I needed to go see a doctor.

so I went to a naturopathic/MD, and the doc did tests and found out I was born Gluten Intolerant with a leaky gut. I don't know the difference between that and celiacs... but either way, I have to cut gluten. I've been on a gluten-free diet almost 3 weeks and I've had a BM everyday for the last 3 days!! I've also lost 7 pounds

Oh yeah... I'm one of the overweight/constipated GI intolerant types... that's why no one ever tested me before, I've always been overweight.

Was anyone having difficulty achieving fitness results before you were diagnosed?

Any feedback will be greatly appreciated. Thanks!

I was just diagnosed with celiacs 7/14/09 so I'm totally new here. But I'm now 40 and always have had issues with my body and fitness. Truth is, I like working out... but I never see the results others do, EVER. For instance: I've been going to my gym for 6 years, I work out 60 mins 4-5x a week - 15 mins stretch, 30 mins elliptical and then some lite strength training. I end my workouts with some time in the sauna/hot tub to relax my muscles, otherwise I'm sore for days. I also do yoga on a regular basis (for years), but I'm still in beginners classes because my joints are so swollen, I have very little range of motion. I just had chalked this up to getting older... I've never felt great... even as a little kid, I was always sick, but no one could ever find anything wrong with me and then they just wanted to put me on antidepressants.

So now I'm about 55 pounds overweight - I gained 25 pound during my last 6 years going to the gym and eating "healthy". (I'm 5'5" 190)

The doc said all my gluten intake over the years has caused a leaky gut (eww) and that could the reason I don't lose the weight.

I recently started a low carb diet to bring my triglycerides and blood sugar down (some of my many symptoms) and I've actually have lost 7 pounds in the last 3 weeks! This to me was amazing ~ I've never lost weight before! Plus I'm feeling better than I have in a LONG time. Then I get the celiac diagnosis, and now all the pieces are fitting together, and I'm actually relieved to know there is a chance I could feel like a normal person at some point in the future... just by eliminating some foods! The added bonus for me is the possibility of losing some weight in the process

I've been suffering from constant pain, bloating, feet swelling, heartburn, constipation/diarrea, high blood sugar, high triglycerides, anemia, headaches, dizzyness, black outs, vomiting, constant nausea, swollen tongue, itchy rashes and hives, liver and spleen pain and swelling. I've had so many tests done where they said nothing was wrong with me ~ and all docs have tried to put me on antidepressants and a weight loss plan. All weight loss plans have failed ~ I even gain when I'm not really eating at all.

I was JUST diagnosed last week with Celiacs with a "leaky gut" (?) ... anyway I'm 40 and while I'm sad I can't have cake and cookies anymore... I'm actually thrilled to know what is actually going on! From my research, all these symptoms could disappear if I avoid gluten ~ wow!! It seems so easy. Then I start reading labels, and this diet might be tougher than I thought. BUT, I'm going to do it because I'm so curious what feeling good feels like

I'm also happy to find this thread and others who are like me ~ I'm loving reading all this information and support!!