Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Another Newbie - Completely Lost

3 posts in this topic

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


Share this post

Link to post
Share on other sites

Ads by Google:

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!


Share this post

Link to post
Share on other sites

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! :)


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • I will cut dairy out immediately. I have eliminated most processed foods already. I do use a lot of spices. I read labels on everything. It is so overwhelming. Is there a good list of ingredients to look for in cosmetics, soaps, supplements... ? It has been recommended that I take a probiotic, calcium and vitamin D. Do you take supplements?
    • My Celiac symptoms always flare after vaccinations.  I've been gluten free for 6 1/2 years.  I find the vaccine benefit to outweigh the temporary rise in symptoms--even though it is quite annoying. Since you've been gluten free for about a year, it's very likely you need more time to heal.  Just stick with it as best you can .  Keep getting flu shots! I think it's best to think of Celiac as a lifelong "trait" (like having red hair, for example) rather than something you can "fix". You will be OK.  Keep eating simple, healthful foods to help your body heal.  Good luck!    
    • Hello, I've had a pretty rough ride health-wise over the past year due to Coeliac. I posted a few months ago explaining my story: I've seen small, incremental improvements over the past few months (headaches starting to ease, more stomach 'rumbling' instead of just an uncomfortable bloated/full feeling etc.) and have just started back at university which I'm pleased about. However, progress is painfully slow and I was hoping to have seen more concrete improvements by now. My stomach also seems to affected by the tiniest thing (i.e. I took some ibuprofen and it upset my stomach for a week or so). Is this normal? Any advice/reassurance from others who still had fairly severe symptoms after 6-8 months gluten free would be really helpful. It can be quite tough both physically and mentally sometimes and the 'light at the end of the tunnel' can seem a long way off.  In addition, I had a flu vaccination around a month ago and since then, have had quite bad GI symptoms, headaches and fatigue which seem to occur in 'flares' of a few days before settling and then starting up again a few days later. I think they're beginning to settle down a little more now but just wondered if it's possible that the flu jab could have had this effect due to the severity of my symptoms and sensitivity of my 'system'/stomach post-diagnosis? I stick to very similar foods on a daily basis because I'm only able to tolerate a bland diet, so I can't put my finger on anything food-related that could be causing this and I'm very careful to avoid gluten and cross-contamination etc (I live at home and prepare meals myself, I don't eat out at the moment and have been 'glutened' once and these symptoms are quite different to that). Has anyone else in the earlier stages of recovery had reactions to vaccinations? Thanks everyone for your support.  
    • It really can be anywhere or any random source, Few tips, as mentioned eat whole foods only nothing processed, Use Freezer paper on your prep surfaces to fix your foods, perhaps gloves in case your touching something else (door to fridge, pantry, computer keyboard, etc) that might have trace gluten residue. Have dedicated gluten-free cooking utensils, pots, and pans. Check your soaps, shampoos, make up and other hygiene products, these might also contain gluten that could be cross contaminating.  I personally had this exact issue and broke down sold everything I had and started new in a new apartment, new appliances, new everything since I was getting sick at least twice a week and could not hold a job. I will link you to the list of gluten ingredients to look out for. Hopefully you can find the cause and not have to go as radical as I did to get relief. It might be something as simple as a spice, or a random product in you house.
    • Thanks for your replies...!  Thanks for all the tips, I am indeed on a caveman diet and trying to figure out what works best. I had rice on Friday and unfortunately did get a reaction (bloating/nervousness), which for now makes carbs a thing of the past. I do indeed do very well on protein and am becoming picky about the ingredients in foods as well. For example I had asparagus the other day but they were packed in citric acid. Little did I know citric acid had sugar. Suffered a severe reaction. All-natural indeed is the only way to go when it comes to curing this thing..  Well, it's a valuable lesson. I never drank enough during my childhood but I'm trying to drink at least a bottle nowadays. It probably contributed to my gut issues.  I'll do my best and see how it goes.  Thanks again, Ken
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member