What Were Your Symptoms? What Got Better?

[JoshB]

I tried to do this as a poll, and for some reason it didn't show. Just as well apparently because I was testing in another thread and polls don't seem to work very well.

So. We all know that there are tons of symptoms. I'm wondering what's normal. I find a lot of references to what can go wrong, but not much as to how often those things go wrong, and if ever got better.

So, would you kindly:

#1 - Tell us how long you think you had issues before diagnosis and the way that you were diagnosed.

#2 - What problems you had before diagnosis.

#3 - What got better, and how long did it take to get better.

I'll start off.

#1 - I probably developed celiac disease around six years old. I was diagnosed by blood test at 28. I found out about celiac disease and insisted on being tested because a genetic test I'd done for fun flagged me as very likely to have the condition and because the symptoms were very familiar.

#2 - I've had stomach pain, and frequent nausea and diarrhea. I also had joint pain -- with minor deformity, eye pain, sometimes a very rapid heart rate for no reason. Also, what seems to be auto-immune hair loss and constant multiple mouth ulcers. I'm 5'10" and 130lbs. My father is 6'2" and 180lbs and my grandfather on the mother's side was 6'4" and 240lbs. Occasionally I've had bouts with psoriasis and migraines. Although it's harder to say for sure I'd also say that my memory isn't a patch on what it used to be, and that I have at least a some issues with ataxia and mental focus.

#3 - Nine months gluten free. My stomach pain and diarrhea is better 60~70% of the time and I'm rarely nauseated. The canker sores almost completely stopped within a couple months. I haven't had any psoriasis or a migraine since going gluten free, though it's hard to say if that means those problems are gone, because they were infrequent to begin with.

Everything else is the same or worse.

[GFinDC]

Hi Josh,

Are you sure aliens aren't testing you? LOl, sorry silly joke related to your poll thread.

Anyhow, I had zook loads of symptoms before gluten-free. Most of them got significantly better after going gluten-free, but I never got to feeling just right until I did 3 elimination diets and got some other foods out of my diet. Celiac can cause leaky gut syndrome and that can lead to food intolerances or food allergies to many foods. Not everyone has additional food intolerances but some, like me, do. For me I could never feel well without removing those troublemaker foods from my diet. If you check out the signature lines of posters you will often see lists of foods that people have found troublesome for them. Sometimes these other food intolerances are temporary and sometimes they aren't. And not everyone has the same intolerances. You may not have any beyond gluten. Celiac is a journey, (sounds romantic and exciting right?) and we all walk our own path. But we do have this site to share our problems with each other and learn from each other's experiences.

To try and answer your questions, after a suitable amount of hot wind:

#1 - Tell us how long you think you had issues before diagnosis and the way that you were diagnosed.

many years although my most acute symptoms didn't manifest until 14 years ago. I had a blood test after being on the gluten-free diet for 3 months, which I failed! But my doctor said it sure sounded like celiac to him, and he is a respected celiac expert, so that was good enough for me.

#2 - What problems you had before diagnosis.

Stuff not working, stuff swelling, bad allergies, swelling, sickness, fog inside my noggin, fatigue, insomnia, (extreme), unreasonable irritability, forgetfullness, repetitive thoughts, ear ringing, joint pain, suddenly passing out for no apparent reason (low blood pressure episodes I think), loss of balance, inability to focus my eyes, cats and dogs living together (that was good actually), bloody stool, black stool, green stool, abdominal pain, not able to sleep because of pain, depression, and the other fun things that make a swell day. Ok, that's enough I think.

#3 - What got better, and how long did it take to get better.

Three years before I got most of the irritants out of my diet and got to feeling pretty good most of the time. I can't think of anything that didn't get better, except I am still not a millionaire. Drat!

[Jenny (AZ via TX)]

1. I had many different issues dating back to at least my 20's (was dx'd with IBS then)

2. I had the following issues: UTI's, chronic sinusitis, allergies year round, anemia, gluten ataxia, migraines. There were probably more issues, but that's all I can think of right now.

All of the above issues improved greatly after going gluten-free. I have not had a UTI or sinus infection since going gluten-free. Very few allergies. I don't think I'm anemic anymore (haven't been tested again), no more gluten ataxia. I have only had a couple of migraines since going gluten-free. I still get headaches, but not as often and not as bad.

I'm not sure how long it took to resolve the above. I used to have to carry tissues with me all the time because of the allergies and sinus problems and now I hardly ever need to blow my nose. Overall, just a huge difference in my life.