I May Have Celiacs

[kittty]

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!

[lesliev523]

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.

[Metoo]

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!

[kittty]

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.

[Cara in Boston]

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

[kittty]

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.

[Cara in Boston]

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