Seld Diagnosis Help

[Dinicoj]

After suffering for the past few years and appearing as the biggest hypochondriac to my familr/friends and doctors alike, I did a google search of my symptoms and found someone's story. It was amazingly similar to mine.

About 3 years ago I started getting wicked nausea and pains in my right side- kind of fluttering along with wicked acid reflux ALL THE TIME - regardless of what I ate or not or when I ate. Got tested for H pylori, thought I was having heart attack at 36, they sent me for unltrasound for gall bladder - no stones. months later still really bad, referred to gastr Dr. She sends me for hydascan - this reveals low functioning gall bladder - so 3 months later out it comes. All is good for a while then the reflux is back. I start to guzzle zantac on and off, then about 6 months I get this wicked intense itching/burning/tingling/ in my scalp moving to armpits, plams, bottom of feet - this lasts for weeks at the beginning of summer. After prednisone it still persists - see the allergist, "you don't need tests, its not an allergy its angioedema and uticaria" I take axid and zyrtec twic a day faithfully for 3 months and I am dying with the acid reflux - the axid is histamine blocker that is for ACID REFLUX and it does nothing. I get off everything and go bacl to zantac. I'm out with a friend I haven't seen in years and feeling p[retty bad. I fill him in and he tels me he's had celiac disease and it sounds like I might too. At first I blow this off thining I don't get an "allergic reaction" within minutes of eating bread so it can't be. Well I can't take it any more and make another appt. for the gastro dr. she does an endoscopy and tests again for h pylori (this is at the Cleveland Cinic mind you) - while she still hasn't given me the results I know its not h pylori. And the Dr. never even brought up Celiac, nor did she bipsy for it while she did the endoscopy - I'm not going back through that again.

I take matter into my own hands and have been off all wheat of any type for 2 weeks now. I feel sooo much better. No achiness in my body - it's like I'm in someone else's body, all of a sudden I can move freely in the morning - it's crazy. I also notice a marked improvement in my rosacea which has been around for about 7 years and nothing would work on it previously. I am wickedly bloated, even my mother said my stomach looks ridiculously big - she thought something was wrong from the gall bladder surgery almost 2 years ago - I still look distended, it never went down. Not to be gross but I have noticed a big improvement when I go to the bathroom (color is normal) and I'm not nearly as gassy and gurgly/belchy. Nor do I have that gnawing hunger pain that never growls - that just freaked me out and started after the endoscopy.

My biggest question is does this sound like celiac? If so, how long will it be this way? I'm guessing forever. I love love love pasta and bread, is there any way to have these on occaision without suffering from the effects - are you ever cured from it.

[wowzer]

Sounds like you are on the right track. Make sure that you are avoiding all gluten. (wheat, rye, oats, barley) If you are gluten intolerant, you can't go back to eating it. I have become even more sensitve to it since going gluten free. If you are feeling so much better from not eating it, why would you want to make yourself sick? I am also self diagnosed. The gluten free diet is enough proof for me.

[ravenwoodglass]

After suffering for the past few years and appearing as the biggest hypochondriac to my familr/friends and doctors alike, I did a google search of my symptoms and found someone's story. It was amazingly similar to mine.

About 3 years ago I started getting wicked nausea and pains in my right side- kind of fluttering along with wicked acid reflux ALL THE TIME - regardless of what I ate or not or when I ate. Got tested for H pylori, thought I was having heart attack at 36, they sent me for unltrasound for gall bladder - no stones. months later still really bad, referred to gastr Dr. She sends me for hydascan - this reveals low functioning gall bladder - so 3 months later out it comes. All is good for a while then the reflux is back. I start to guzzle zantac on and off, then about 6 months I get this wicked intense itching/burning/tingling/ in my scalp moving to armpits, plams, bottom of feet - this lasts for weeks at the beginning of summer. After prednisone it still persists - see the allergist, "you don't need tests, its not an allergy its angioedema and uticaria" I take axid and zyrtec twic a day faithfully for 3 months and I am dying with the acid reflux - the axid is histamine blocker that is for ACID REFLUX and it does nothing. I get off everything and go bacl to zantac. I'm out with a friend I haven't seen in years and feeling p[retty bad. I fill him in and he tels me he's had celiac disease and it sounds like I might too. At first I blow this off thining I don't get an "allergic reaction" within minutes of eating bread so it can't be. Well I can't take it any more and make another appt. for the gastro dr. she does an endoscopy and tests again for h pylori (this is at the Cleveland Cinic mind you) - while she still hasn't given me the results I know its not h pylori. And the Dr. never even brought up Celiac, nor did she bipsy for it while she did the endoscopy - I'm not going back through that again.

I take matter into my own hands and have been off all wheat of any type for 2 weeks now. I feel sooo much better. No achiness in my body - it's like I'm in someone else's body, all of a sudden I can move freely in the morning - it's crazy. I also notice a marked improvement in my rosacea which has been around for about 7 years and nothing would work on it previously. I am wickedly bloated, even my mother said my stomach looks ridiculously big - she thought something was wrong from the gall bladder surgery almost 2 years ago - I still look distended, it never went down. Not to be gross but I have noticed a big improvement when I go to the bathroom (color is normal) and I'm not nearly as gassy and gurgly/belchy. Nor do I have that gnawing hunger pain that never growls - that just freaked me out and started after the endoscopy.

My biggest question is does this sound like celiac? If so, how long will it be this way? I'm guessing forever. I love love love pasta and bread, is there any way to have these on occaision without suffering from the effects - are you ever cured from it.

You are never 'cured' of celiac, it is a genetic difference, but you can live a healthy, energetic and painless life with it. If you follow the diet strictly that will relieve your symptoms and help prevent other autoimmune issues from forming. As was mentioned you need to avoid all gluten not just wheat. It sounds like you have gotten a good result from a trial gluten-free and you should continue with the diet. You have come to a great place for info and support. Ask any questions you need to and don't think that you can never have pasta, bread, pizza, beer, cookies, cakes etc. You can they just won't be made out of poison. Check out the products section for ideas for gluten free foods and also ask people what they use. Be sure to check out the links on the home page and Scotts gluten-free market also and there are many gluten-free foods that can be ordered over the web. The easiest and safest thing to do at the beginning however is to go with as much naturally gluten free food as you can. Eat unprocessed meats, fruits, veggies, nuts, eggs, beans, rice, potatoes etc and wait a bit before you go all out with the specialty gluten free stuff.

[Dinicoj]

Thanks for the feedback. This is seriously so overwhelming. I did try some gluten free bagels and I have to say I gagged on the one bite I had. I'll stick to the naturally gluten free things for now. I am seriously sonsidering asking my husband to get me a bread maker for xmas - I just cannot imagine not eating bread ever again.

My other question is this is said to be heriditary, have you found that your siblings/parents exhibit the same symtoms or even know they have it. Mine seem to think its only me, but man do they have their own health issues that I would bet are due to gluten - especially sister with chronic sinus problem and cysts. Why don't the doctors even entertain the possibility? evry symptom is take on its own and given a drug for - how do you find a good physician?

[wowzer]

Yes Celiac Disease is hereditary. I do have a little sister that was diagnosed at a year old. I didn't find mine until I was 52. I have DH. Looking at my family, I am wondering if both my mother and father were just never diagnosed. I believe my mother had an uncle that was also diagnosed. I did think that the bread would be the hardest for me to overcome. I haven't cheated. So far I haven't found any gluten free bread worth eating. I am tired of wasting money on it. My husband got some hamburger buns that weren't too bad. I wrapped them in foil and put them in the oven and were pretty close to a regular one. I did make some of the bread into croutons and had french onion soup. That was also pretty good. For me feeling better eating gluten free made it a little easier to give up bread. Try Van's gluten free waffles. They taste like regular ones.

[cyberprof]

Doctors- that's a whole thread itself.

A breadmaker might be a good way to go if you want bread. There are several recipes here in this site that are good...read the threads first before buying a machine. Here's one Open Original Shared Link and here's another Open Original Shared Link The bread might take a few tries but keep at it and you'll be successful.

You are lucky that your friend told you about celiac. There is lots of help on this board. With a bit of reading and a little work, you should feel better and get rid of a lot of symptoms very soon. Good luck!

~Laura