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I May Have Celiacs
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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!

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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.

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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!

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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.

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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

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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.

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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

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    • I eat them with no issues and know several other Celiacs that eat them with no issue.
    • I am sorry that you are sick! i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.   I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years. If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   
    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
    • I have also reacted to various Planters products, believing them to be safe because gluten is not listed in the allergens but have had almost identical reactions to yours.  It did not occur to me that I might be getting zapped from them until just recently when I ate some of their Salt and Vinegar almonds and became really ill and then recognized that I had reacted to them before. I have notice in the past few months that the 'Hermans' brand nuts, which have never mentioned wheat in their allergens now carries the 'processed in a plant that processes wheat' disclaimer.  It makes me wonder if all nuts are processed in the same manner and if all nuts and nut products should be considered unsafe? I know that I will not trust the Planters brand any longer regardless of whether wheat is listed or not.
    • I've heard some people say that they're gluten free, and some say they're not.. I had a container of planter's cashews that I ate a few days ago and I haven't been feeling that great since then. I thought I was fine, but yesterday I woke up with a headache and was feeling really gassy all day. Then since last night, every once in a while I'll have some stomach cramps. They last for a few minutes and then go away.. that has happened 3 or 4 times since last night. It seems weird that I wouldn't have a reaction right away though.. or at least within a few hours of eating them. I ate some on thursday and on friday, and I didn't really start to feel sick until saturday. It's been a while since I last got glutened though, so maybe my reaction has changed? Or maybe I'm being paranoid and I just ate too many cashews haha. But that's the only thing I've eaten in the past like 2 weeks that was different. Has anyone else had a problem with planter's nuts?
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