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Another Newbie - Completely Lost
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Hello there. I have been reading here for a couple of days, and have finally gathered the courage to post. I know there are a lot of posts just like mine, so thank you to anyone who reads my rambling.

Obviously I am here because of Celiacs, but I have not been diagnosed. Just like many stories I've read, I suspect based on all my symptoms. I don't know how many times I have seen my doctor with the complaint that I am just sick of always feeling like crap. My story is pretty typical to many I have read here. As a teenager I just always felt sick to my stomach, nauseated and moderate, tolerable pains. My mom shrugged it off, thought I was just complaining all the time, nothing really wrong. I started having depression, anxiety issues and panic attacks around 16. I blame some of that on hormones and being a teen, but I still struggle and never really understand why, I don't feel like I should be depressed, but often am.

I went through life just always having a lot of stomach aches and pains, it was just normal for me. I have never been 'regular' in the bathroom area as long as I can remember. Every few days was very normal for me. I have terrible gas and gas pains often, and it doesn't seem to matter what I eat. I get a lot of muscle aches and joint pain for no reason. I've been tested for RA twice. I have never been able to sleep well. I can stay asleep, but falling asleep is hard. I have no sex drive at all. Like I enjoy it, but have no desire to initiate it. I am completely exhausted all the time, everyone just says it's because I have 4 kids. I get headaches all the time and I feel like I can't remember anything most days. I have trouble keeping up with things if I don't write it down. When I was pregnant with my now 2 year old I had a glass of chocolate milk and then felt really bad afterward. I said to my husband, why does milk always make me feel so bad. He laughed and said maybe you are lactose intolerant. It was like a lightbulb went off over my head. THAT would explain all the stomach pain. I did some research and it seemed plausible so I cut out lactose. Not completely, but pretty much everything except the little bits in processed things and I still ate cheese. I love cheese :) I noticed a difference mildly in my aches, and in my gas, but everything else is still there.

Fast forward to now, for the last 5ish weeks I have switched from "going" every few days to every time I eat a meal. At first I thought I had a virus (probably did), I had super diarrhea for about 5 days and actually went to get IV fluids because I am pregnant and wasn't keeping anything in. It slowed to anytime I ate a large portion of something, but after 3 weeks I was beginning to wonder what was going on. I would get terrible cramps and have to go to the bathroom immediately. It occured to me that this has happened many times before, with the sharp pains, but it has never been this consistant. It's so embarrassing. Last week I had a period of about 3 days with nothing, and now I am back to everytime I eat I have diarrhea. Twice this week I haven't made it to the bathroom, and I was only downstairs at home. I am beginning to be afraid to go anywhere. It's humiliating and I have never talked to the doctor about the GI stuff because I am embarrassed and she can't seem to find anything wrong with me anyway. I have been tested for thyroid issuesand RA twice, and have had routine blood work even recently, but nothing special like vitamins or anything. I have been slightly anemic several times. Twice I couldn't donate blood because my hgb was too low.

Everyone brushes all my symptoms into stress of having 4 kids and going to school, but I believe I handle it all quite well and feel like crap all the time. It's not stress. I don't care what anyone says. I know my body and I just don't feel good ever.

While trying to figure out what would cause my current GI problems I stumbled across Celiac Disease and have been reading like a maniac ever since. It all sounds just like me. I can

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Welcome! Others may have more answers since I am still going through the testing process myself. If you know your primary care doctor will do a complete celiac panel for a blood test then you can just go with your primary. But if you aren't sure then ask for a Gastro referral. My primary was taking blood to test for the H pylori and I asked them to take it to test for celiac. She said yes but then the person taking the blood said that they were only testing for H pylori. I asked if she could just take an extra vial of blood and ask the doctor again to check for celiac and they did. It did come back negative, and I was referred to gastro who did an endoscopy that shows signs of celiac. So I am not waiting on gene testing and a possible repeat endoscopy. I am going to go gluten free either way after to see if it helps me feel better. I am considering going lactose free for a couple weeks even if I am negative too. It seems like everything I eat makes me feel sick so may as well try it. I am also doing food allergy testing, that may be a helpful test for you as well.

About the symptoms, I am not a doctor (surprise!) but those definitely could be symptoms. They could be symptoms of other things too I suppose but they are celiac symptoms. I have a lot of those too with with some extra ones, but I don't have the diarrhea, still mostly constipation.

Good luck researching and finding answers. I feel like even if I don't have celiac, I sure know a whole lot more than most doctors seem to now!

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Welcome, PurlQueen,

Your story sounds like so many others here. Asking your doctor about celiac disease is a good first step. It's good that you're getting tested before you go gluten free. Hope you feel better real soon! :)

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    • I just traveled three weeks this summer in Europe (Eastern).  Do not trust that the airlines will remember to load a gluten-free meal for you.  There is a 50-50 chance that they will not (in my experience).  We packed ONLY carry on.  Still found plenty of room to stash some emergency food.  You should be able to find food within an International airport.  Chips and typical junk food clearly labeled, even fruit.  Print or load Celiac travel cards with you in all the languages you will need.  They are free.  Google it.  Found these handy (not only in restaurants) but in the markets when we could not read labels but the staff could read them and Help us to make gluten-free choices.  amazing how you can communicate without knowing the language.  A few words like "thank you" in their language go along way (so does Google Translator).  Never met anyone who was not willing to help.   I carry a collapsible cooler that I pack with food and bags of ice to eat on then plane or right at my arrival or connection.  I take extra zip lock baggies with me.  Sometimes TSA will let you through if the ice is still hard (not melting).  Some will make you toss them then I just ask a restaurant to refill my ziplock baggies after passing Security.   I also carry a doctor's letter on my phone to show I am celiac, but no one has ever asked for me to present it.   Even though I carry a "third" piece of luggage on board, I have not been stopped.  Both that and my day backpack fit under the seat.  I use this cooler as needed through our trips.  If not, it fits in my backpack.  
    • Welcome, Kierra. You're only 15 so you need to make sure your parents are 100% aware of your medical issues so that they can advocate for you. It may or may not be celiac, but the only way to find out is to start with a full celiac blood panel, then an endoscope if necessary. However, for the tests to be accurate, you must consume gluten on a daily basis. 
    • Great points!  We use the "Find Me Gluten Free" app a lot (post too).   We look for reviews created by celiacs.  I probably sounded like Debbie Downer when I posted above, but it is possible to go out and dine at restuarants, it just takes a little research and time to the restaurant staff.    
    • Yes it sounds like you may need further testing to rule out other conditions. Maybe seeking a second opinion from a endocrinologist and/ or rheumatologist would be a place to start.
    • This is a personal choice and everyone will have different levels of comfort depending on personal preferences and their circumstances -- what's available, where they live, the details of their condition. Gluten Dude is a blogger who has written a lot about the topic of dining out with Celiac: http://glutendude.com/category/eating-out/ Calling ahead to see if they are gluten-free, learning about their practices, and make sure their able to accommodate requests is a good strategy. There's other tricks like using the gluten-free filter on Yelp when searching for restaurants. I know some people like Find Me Gluten Free which has a website and app. It's an adjustment for sure, but it can be worth it to feel better and still get to do things you enjoy.
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