Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I May Have Celiacs
0

7 posts in this topic

Hello! I'm a new member.

I haven't been diagnosed with celiac's, and I'm not sure if it's just gluten intolerance. I don't really trust doctors anymore, so I wanted to get some advice from people who suffer from this condition.

For many years I've had all kinds of health problems (anxiety, migraines, sinus problems, vertigo, nausea, acid reflux, unexplained weight gain, lack of energy, aches and pains), and all the doctors wanted to do was prescribe pills for the symptoms rather than actually trying to figure out what was going wrong. I knew all the problems had to be related, because before they started showing up I had been a mostly healthy person. One doctor even prescribed phentermine for the weight gain and literally called it a "magic pill" - I thought my heart was going to explode after taking just a couple of doses!

About a 18 months ago some serious stomach issues started showing up, including diarrhea and painful stomach cramping. I also noticed a rapidly developing Buddha belly. I'd gained weight before, but never in the belly area like that.

The symptoms kept getting worse and worse - and over the last few months the stomach issues and migraines had been so bad that they were ruining my life. On the suggestion of a co-worker I tried eliminating gluten about a week ago and I already feel like a new person! The diarrhea went away within three days, the headaches went away almost immediately, and I've lost five pounds already. My stomach doesn't seem to stick out as far, and I've noticed less puffiness around my eyes and face. I also cut out dairy as I seem to be lactose intolerant too (which I hear can clear up after the gluten damage is repaired).

I'm convinced now that most (if not all) of my problems were related to gluten - but how important is it to actually get a diagnosis from a doctor? Would it be okay just to continue and say "gluten affects me badly" and just stop eating it and get healthier, or is there some benefit to actually going to the doctor's office, going through the procedures, and getting an official diagnosis?

Thanks for any responses. I've already learned a lot from reading some posts in this forum!

0

Share this post


Link to post
Share on other sites


Ads by Google:

I have had pretty much the same symptoms as you. I went off gluten for awhile, and felt better. Then went back on it, and everything came back, and in some cases worse than before.

I finally got tested and got the blood results back today. NEGATIVE. But I have decided to go back to being gluten-free. I really think it will make all the difference in the world.

If you know you feel better, and can commit to being gluten-free without an "official" diagnosis. Then just stick to that. Otherwise you have to go back on gluten to get accurate testing.

0

Share this post


Link to post
Share on other sites

Hello! I'm a new member.

I haven't been diagnosed with celiac's, and I'm not sure if it's just gluten intolerance. I don't really trust doctors anymore, so I wanted to get some advice from people who suffer from this condition.

For many years I've had all kinds of health problems (anxiety, migraines, sinus problems, vertigo, nausea, acid reflux, unexplained weight gain, lack of energy, aches and pains), and all the doctors wanted to do was prescribe pills for the symptoms rather than actually trying to figure out what was going wrong. I knew all the problems had to be related, because before they started showing up I had been a mostly healthy person. One doctor even prescribed phentermine for the weight gain and literally called it a "magic pill" - I thought my heart was going to explode after taking just a couple of doses!

About a 18 months ago some serious stomach issues started showing up, including diarrhea and painful stomach cramping. I also noticed a rapidly developing Buddha belly. I'd gained weight before, but never in the belly area like that.

The symptoms kept getting worse and worse - and over the last few months the stomach issues and migraines had been so bad that they were ruining my life. On the suggestion of a co-worker I tried eliminating gluten about a week ago and I already feel like a new person! The diarrhea went away within three days, the headaches went away almost immediately, and I've lost five pounds already. My stomach doesn't seem to stick out as far, and I've noticed less puffiness around my eyes and face. I also cut out dairy as I seem to be lactose intolerant too (which I hear can clear up after the gluten damage is repaired).

I'm convinced now that most (if not all) of my problems were related to gluten - but how important is it to actually get a diagnosis from a doctor? Would it be okay just to continue and say "gluten affects me badly" and just stop eating it and get healthier, or is there some benefit to actually going to the doctor's office, going through the procedures, and getting an official diagnosis?

Thanks for any responses. I've already learned a lot from reading some posts in this forum!

LOL @ "One doctor even prescribed phentermine for the weight gain and literally called it a "magic pill" - I thought my heart was going to explode after taking just a couple of doses!" The same thing happened to me! lol. I felt awful!

If you feel better gluten free, I would stick it out. I don't have an official diagnosis. I had years of random stomach pain, bloating, rashes, fatique, weight gain. I feel a lot better, the weight gain part isn't working out for me still...but I can actually run now!

0

Share this post


Link to post
Share on other sites

Thanks for the responses.

Metoo - I can't believe a doctor would even prescribe phentermine now that I've read about it. It changed my resting heart rate from about 70bpm to almost 100bpm in a matter of hours. It really scared me!

I'm just angry that after years of going through these different problems not a single doctor bothered to suggest celiacs/gluten intolerance. I've been through barium/x-ray test, MRI's, sonagrams, and many more. I've seen cardiologists, endocrinologists, gastroenterologists...the list goes on and on. Not once did I hear a peep about food intolerances. It seems like such a simple and obvious solution in hindsight.

0

Share this post


Link to post
Share on other sites

Kitty -

I could have written your post. My doctor kept sending me to specialists (neurologist, cardiologist, GI) , but since they were all different, no one looked at all the symptoms as a whole. It wasn't until my son was tested (his only symptom was behavior) that I even learned about celiac disease. When the whole family got tested after son was found positive, my blood test was positive too.

I pushed for a "real" diagnosis for my son (first doctor said no celiac because his genetic test indicated "low" risk and he had zero GI symptoms) because he was only 5 at the time and I knew we would need medical verification for things like school, camps, college dorms, possibly military, who knows what in the future. We ended up at the celiac clinic at Children's Hospital and he had a positive endoscopy.

For me, since I was an adult, it didn't really matter. I already knew we had it in the family (son), so I know to keep an eye on my other kids. When I went gluten free all my symptoms went away - that is all the proof I need.

Even my doctor has noticed a difference . . . I am no longer the crazy "hypochondriac" that keeps coming up with strange symptoms even though every test they give me (except apparently celiac) comes back normal.

Be sure to stick with the diet for at least three months before you decide if it has helped you or not . . . and be sure you are 100% gluten free - even the smallest amount would still make you sick and if you make a mistake, you might wrongfully assume gluten is not a problem for you because the symptoms persist.

Good luck to you -

Cara

0

Share this post


Link to post
Share on other sites




Thanks for your advice Cara! It's just great to know other people have experienced the same thing and I'm not going crazy.

Oh yes, I am SOO tired of being called a hypochondriac and a liar by doctors. It's insulting. They'd give me this sideways look and say "you're overweight, so stop eating fast food." I don't eat fast food - I've never eaten fast food more than a couple of times per year in my life - but they never believed me. When I was having really bad GERDs, to the point of pre-ulcers, they told me to eat simple foods like whole wheat bread (...sigh) and the cut out coffee. I don't drink coffee - but again, they didn't believe me when I told them.

And because doctor's offices always asked me to fill out a form with family medical history, and because my mom had thyroid problems, every new doctor assumes all the problems I have are related to my thyroid. They didn't even bother to look into anything else. The tests always came back negative. Because all my other levels (heart rate, blood pressure, blood sugar, cholesterol) were always normal, it had to be "in my head". One doctor, who I saw because my fatigue was getting really bad, picked up her prescription pad and wrote me a prescription to "exercise more". I was going to the gym three times a week. Of course, she didn't believe me.

I've been on prescription migraine medication, several different antidepressants, prescription sinus sprays, phentermine, several different acid/pump blockers, xanax, and more. I stopped taking all of them less than a month after they were prescribed because the side effects were making me sicker than the original symptoms. I've looked in vain for a real doctor, and not just a pill pusher, and they don't seem to exist around here. I tried DO's because I heard they were less likely to prescribe pills and more likely to investigate causes, but from my experience they are worse pill pushers than the MD's.

0

Share this post


Link to post
Share on other sites

Hang in there. I felt better then ever within a few weeks. Months later, it was even better! Now (one year) I am almost back to how I was 10 years ago . . .

But strangely, old habits are hard to break. I still worry about being out all day when I don't know where the bathrooms are! Even though this is no longer a problem, I spent so much time worrying about it in the past it is like second nature to me.

On the gluten free diet, don't get caught up with all the processed gluten-free foods - I put on 15 additional pounds in the first year. Now that I eat mostly naturally gluten-free foods, it is all coming off - slowly but surely.

Best of luck to you.

Cara

0

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
0

  • Forum Statistics

    • Total Topics
      104,654
    • Total Posts
      921,619
  • Topics

  • Posts

    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
    • Thanks cyclinglady! I will!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,654
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined