Where Do I Go From Here?

[DianeMu]

Hi, My name is Diane. I have been a lingerer on the boards for a few months now. But this is my first post. I need to share my story and maybe get some advice. After my second child was born (7 years ago) I noticed a definite change in how I felt. I was extremely tired and achy all over. I also began have bowel movements so many times during the day and they really, really stunk (sorry for the description - but there's no way around it!) Went to the doctor and was told - of course you are tired and achy, you just had a baby a few months ago. I knew it was different, but went on. A year later I still had the same symptoms, tired and achy (it would get worse and better without explanation) but now I had sinus headaches that were getting more frequent and my skin texture was changing. I have had a red rash on my face since college but now it was getting worse and my skin was rough. Went to doctor again, ran tests, told I may have Lupus. Went to rumotologist and was told, my levels were not high enough - I had tendonitis. I said "everywhere?" and was told "Sure - maybe someday you'll be diagnosed with an autoimmune disorder, but right now you don't have enough symptoms". For the next several years my doctor's office file got huge with my complaints and I began feeling like a loon! One doctor thought maybe it was fibromyalgia and referred me to a specialist. I never went because in my heart it didn't seem to fit. And I was afraid of being 'tagged' and not treated seriously. So my symptoms continued, sometimes worse than others. These were my symptoms: fatigue, achy joints, bowel movement issues, rash on face and rough texture, sinus headaches, irritability, there were also lots of little things. This past summer, I was researching something for a friend and came across Celiac's disease and not knowing what it was looked into it. So many of the symptoms were familiar to me. Except I am not underweight - I am about 30 pounds overweight. Went to the doctor - they said to go on a gluten-free diet and see what happens. NO info or help - but that's another story. So research I did, and gluten-free diet I did - and I'm still doing. With in 2 weeks I noticed the texture of my skin much better. Within a month, fatigue and achiness pretty much subsided. My husband almost fell over when he saw me coming up the steps one day "Do you realize you just ran up those steps - you haven't done that in Years!" Now, five months later I feel great, symptoms gone, face clear, much more pleasant. When I accidentally eat gluten I know it. My aches and fatigue are back and my face breaks out, and the toilet issues are back for a day or so. So, here I am undiagnosed by professionals, not willing to go back on gluten for bloodwork, wondering at times if I'm a loon! I wonder if I have Celiac Disease or a gluten intolerance or if it even matters as long as I feel better? Can anyone relate or have any advice or words of wisdom? Thanks so much for reading my long Post!!!!

[mushroom]

Welcome to the board! If you have been lingering around here for a while you have surely come across stories similar to yours. You can't get anyone to test you for celiac so you go gluten free, your symptoms improve and come back when you accidentally ingest gluten, so you know you are gluten intolerant. But you must poison yourself in order to get a diagnosis.

For some of us, it doesn't matter, we just accept it and get on with it. Others have self-doubt and/or want to know if it is celiac or gluten intolerance. But when it all boils down, the treatment is exactly the same whatever the diagnosis. You can get just as sick with gluten intolerance as you can if you are diagnosed as celiac. There seems to be a continuum on the gluten intolerance scale - some of us are diagnosed celiac accidentally and have had no symptoms; others have all the symptoms to the max and can't buy a diagnosis. This is partly because there is a known 20% false negative rate on the testing, both blood panel and endoscopy with biopsy, but also partly because there seems to be something other than what they are testing for which causes the problem. Research is ongoing. I am in the untested category and quite happily so.

The only area where diagnosis makes a real difference is for a child who needs special considerations in school to be kept gluten free. And speaking of children, since there. is a genetically inheritable predisposition to gluten intolerance/celiac, you should have your children tested; if they test positive you pretty much have your answer, But even if they test negative it might be a good idea to cook gluten free for them and keep a close eye out for the development of any symptoms from what they eat outside the house.

[FooGirlsMom]

Yep. No, you're not a loon. My medical history was complicated too. I was really sick in my 20s after the birth of our son and it progressively got worse until he was around 3. Then I had 2 of the sickest years of my life (until 2008 that is). The doctors didn't know what was wrong with me. The specialists couldn't figure out why my hormones were off, I had chronic fatigue, etc. My husband, who was used to me being a very active person when he married me wondered what happened.

Eventually I had to turn to "alternative" medicine to try to get better. Since I had a systemic yeast problem (Candida) I went that route. I happened upon a diet called "Body Ecology" which cut all grains except amaranth, quinoa, buckwheat & millet, no fruits but lemons & limes, and veggies. It was gluten free, dairy free & sugar free. I had no concept back that that Celiac/gluten intolerance could possibly be my problem. The diet did work though. I felt better. Not 100% but maybe 80%. I gained weight due to gluten, just like you. I put on FORTY pounds in one calendar year when I was so sick. I took of 20 through the BE diet. Then I wanted to take off some more weight so I found Atkins because I knew I was carb sensitive somehow...I always seemed to gain on bread. (If I'd only known). The Atkins diet (the induction version) did help me lose. I took off another 10-20 and would keep taking off the 10-20 over and over again because going back to "normal" food always caused weight gain.

I wasn't at my ideal weight, but I was ok until 2008. Then the stress of my mom having a stroke & all the aftermath, upset my food, exercise etc. routine. Within 4 months I wasn't feeling too well. 4 months after that I was sick. The chronic fatigue was back but instead of having hormone problems & yeart issues, I was suffering from fibromyalgia symptoms, heart-palpitations, high bp, and you name it. I tried everything. Nothing was working. I even tried going back to low carb but I could feel how weak my body was and it felt like my kidneys hurt when I would be on that diet. So I went the "whole food" route complete with whole wheat, like I grew up. I was getting sicker and sicker. My legs got to the point where they hurt when I went up and down the three sets of stairs in our home. I was walking like I was 90. I didn't tell my husband the half of it. We had no insurance (and still don't) and I was secretly terrified. My legs were tingling all the time. I was becoming heat intolerant last summer and felt like I was dying on an outdoor shopping trip. These are now symptoms (and a couple of others I had ) of M.S. By Sept/Oct of this year I was wondering how much longer I had on this earth. I could feel that I was slightly anemic & having vitamin absorption issues. AS I looked up symptoms online - it was all pointing that direction.

It wasn't until I met up with a friend who has Celiac in late Sept. that the bells started to ring. I had no idea that gluten intolerance was auto-immune. Even when I was eating gluten-free some years back, the longest I stayed on the diet was 6 months because once my symptoms improved (the insulin resistance & weight gain) I would eat healthy, and "normally". So I never experienced years of gluten free eating and therefore never experienced 100% recovery.

I've been gluten-free since October and it's been a bumpier road than I had 10 years ago, for instance, but I was also in much worse shape. I'd never "glutened" non-stop for 2 straight years since I was first sick back in the 90s. I am 110% sure, given my medical history (I accidentally found gluten-free just by treating symptoms) and when I glutened for 2 years I was getting an auto-immune response that worsened MONTHLY. I knew I was dying. Seriously. I could feel myself growing sicker & weaker by the calendar month. In just a couple of months I am on the road to recovery now. It'll take a while to get back to something like normal. I still have arthritic issues at times and some achiness, but compared to 2 months ago - wow! Losing about 20 lbs didn't hurt my feelings either.

I know exactly where you are coming from. I will never need to seek a diagnosis. It's a sheer miracle, to my mind, that as sick I was 2 months ago, that I feel as good as I do now. I'd still like to feel another 25% better, as most days I still feel I'm functioning at about 65%....but every now & again I have an 80-85% day and it's like turning back the clock and it feels WONDERFUL.

So hang in there and stay gluten-free. I don't care what a doctor says. I just want my life back! It's been tough on my kids and husband too because mom has been sick the past 2 years. They want me back too.

Take Care,

FooGirlsMom

[DianeMu]

Thanks guys! My daughter does have some stomach issues. We have an appointment for her at a gastro doctor coming up. I am planning on asking her to be tested for food allergies.

[mushroom]

Thanks guys! My daughter does have some stomach issues. We have an appointment for her at a gastro doctor coming up. I am planning on asking her to be tested for food allergies.

Testing for food allergies will not disclose celiac disease; you need to ask the doctor to run a celiac panel if you think that is what it is. Celiac disease is an autoimmune response to gluten, not an allergic response.

[DianeMu]

Testing for food allergies will not disclose celiac disease; you need to ask the doctor to run a celiac panel if you think that is what it is. Celiac disease is an autoimmune response to gluten, not an allergic response.

OK. I will do that. I'm not sure what's going on with her. She's nine. She's super skinny - but has always seemed healthy. She has always thrown up easily and lately it's an hour after she goes to bed. She also complains of achy legs- but she is growing fast. We'll see...

[asaldana]

I am going through the exact same thing right now. After my daughter was born last year I started having muscle aches, severe joint pain, fatigue, fliud retention and headaches. I could tell all of the Drs. I went to thought I was making things up. I gained 30lbs in 2 months and that didnt even alarm them! I was to the point of having to file for FML at work b/c I could not function anymore, I couldnt even walk!

I chose to go gluten free after no explainations were given to me. Tons of test were done, lupus and RA were thought to be the problem and ruled out. I have been gluten-free since 11/27/10 and am down 16 lbs today and feeling better every day.

My 2 PCPs still give me no help and just said to contine and monitor. I have cut them out and am seeing a GI next

good lucj

[DianeMu]

I am going through the exact same thing right now. After my daughter was born last year I started having muscle aches, severe joint pain, fatigue, fliud retention and headaches. I could tell all of the Drs. I went to thought I was making things up. I gained 30lbs in 2 months and that didnt even alarm them! I was to the point of having to file for FML at work b/c I could not function anymore, I couldnt even walk!

I chose to go gluten free after no explainations were given to me. Tons of test were done, lupus and RA were thought to be the problem and ruled out. I have been gluten-free since 11/27/10 and am down 16 lbs today and feeling better every day.

My 2 PCPs still give me no help and just said to contine and monitor. I have cut them out and am seeing a GI next

good lucj

Wow! I feel for you! Isn't it scarey how similar the stories all are on these board? Thanks for your comments guys.

[halsgluten]

"Sure - maybe someday you'll be diagnosed with an autoimmune disorder,

Sure, if you kept eating gluten. I have read about and talked with doctors who were explicitly told in school to not waste time considering or studying Celiac Disease.

I began feeling like a loon!

I think many of us go through that. I