Celiac Disease - Coping With

Abdominal Pain

Fri, 10 Feb 2012 10:57:54 +0000

I've been suffering abdominal pain and tenderness issues since May 2011 -- since my Celiac diagnosis (August 2011) and going gluten free the pain has lessened but I've still got it. Some days are better than others...but honestly, I am exhausted from dealing with it.

Tylenol doesn't help at all. I shouldn't take ibuprofen or naproxen sodium due to past history with GERD and gastritis (either of these will set it off and I've got enough to deal with right now, don't need that!)

I've been talking with one of my doctors but he seems really leery to offer anything. I don't know if it is because I am too stoic and I should be in tears when I talk about it but since all the doctors originally dismissed my Celiac symptoms as "it is all in your head" I have tried to stay very unemotional when dealing with the doctors so they take me more seriously. It could also be a cross-cultural issue since I'm in Poland (but I'm not Polish!) and maybe a Pole would be acting differently.

Whatever it is, does anyone else have serious pain issues from Celiac? What do you take? How do you deal?

I have 5 more months here in Poland and then I return to the United States (yay!) but I'd really like to not spend the next 5 months still in pain.

Thanks.

1 Year Since My Trip To Er

Fri, 10 Feb 2012 07:10:51 +0000

A year ago today I was laying in a hospital bed, very sick and docs had no clue what my problem was. What I can say it has been one heck of a journey! For those struggling now struggling for answers and wondering if celiac could really be the culprit, you are not alone. I don't know why it is so hard to diagnose but I can tell you it will do a HUGE amount of damage to your body.

I have been gluten-free now for 10 months.....it was a 2 steps fwd, one step back process for a long time but once I got it figured out I found the diet much easier than I ever thought it would be.

Still fighting some issues as this just went nuts and was attacking every inch of my body, it seems. It been like chasing a fire inside of my body. Once I get the flames out in one part of the body it goes some place else but the good thing is these issues are finally being addressed. I have gotten to know my docs better in the this last year than ever before. I wonder when they see me is they are thinking, 'Oh no, here comes the nut-case, hypochondriac!'

My stomach was a real mess when all this started, spent 5 months on Nexium, Pepto, and low acidic diet to get some healing started. I am still on a low acidic diet trying to regain some bone growth that I had lost. At this point I only take antacids if I have a glass of wine or something with spice, and I can tolerate a little of both now.

The dizziness which I had every day, all day for 9 months, left as soon as I was able to keep gluten out of my diet for 4 weeks which was amazing! My high blood calcium went from hyper to boderline hypo in a matter of weeks off gluten. As soon as I got my vits lined-out with the diet my flinches/spasms, vision issues, crawling feeling on the skin, headaches, stiff neck and back, high blood pressure and heart palpitations all went away!! My mental clarity has improved tramendously, my speach which seemed almost a stutter at times has improved. Recently I have been successful in being able to cut back on my vits without any of the symptoms like burning in my feet, coming back!!

The gluten-free diet has made a huge difference in my life. It has not been a speedy process but well worth the dedication it takes!

Recently Diagnosed

Fri, 10 Feb 2012 00:24:33 +0000

Just wanted to introduce myself, recently diagnosed through a blood test and biopsy and am now diving into the wonderful world of being wheatless. Wanted to see if anyone had any of these symptoms?

It is quite overwhelming at first. I work in a city and typically eat out for lunch, and I dont even know where to begin.
I still can't get a grasp on it entirely and almost think there is something else going on too.

I have had barretts esphogus for about 3 years (first time it showed up on an endoscopy). I am 33. Lately I was having chronic burping, at all times of day, and chest tightness with difficulty breathing. I also had major abdomen pain on random occasions including after bowel movements. I also have pain in my upper right quadrant (where they say gall bladder pain is, but yet no gall bladder issues apparently)

Has anyone had these symptoms? Will they get better with the gluten free diet? I am relatively in shape, go to gym often and try not to eat too unhealthy. But this is going to be different.

For the longest time my old GI said I had IBS and would give me bentyl. I had to go to a different GI doctor who first was convinced it was my gallbladder. But after testing, this popped up. (I even had a HIDA scan and had 83% ejection fraction)

Just looking for some guidance. Thanks in advance.

How Long Will It Take To Feel Better?

Thu, 09 Feb 2012 22:12:44 +0000

I was just newly diagnosed and have been on and off gluten prior to diagnosis. Just wondering when everyone started to feel 100%

Abdominal Distention? Try This!

Thu, 09 Feb 2012 21:03:20 +0000

This has always been my main issue, and one of the big ones for most of us, especially the gals. I used to do all kinds of abdominal exercises and all I got was big bloated muscular abs!
I started doing 'stomach vacumes' a year ago, and like most things I lost interest-they didnt seem to be working.(Thats my A.D.D. there too).
In January when I went gluten free I started to incorporate these into my daily workout again but this time stuck with it like I'm sticking to a gluten free diet. I am not a bodybuilder, but I stretch, lift some light weights, and jog on my treadmill for 15 minutes a day. I have to as I have a sedentary job, and I'm a couch potato after work.
Anyhoo, it took a couple of weeks, but I am starting to see results. I can actually suck my gut in somewhat. My theory is that the muscles have become weak and stretched out from years of distension, so doing these has got them back into shape. Kind of like the 'kegeling' my wife did after the kids were born!
Dont expect results right away-it will take a couple weeks and you have to do them every day. Here is the link:
http://www.bodybuilding.com/fun/ms-fit5.htm
Let me know if they work for you!

New Problem Since Diagnosis

Thu, 09 Feb 2012 17:33:23 +0000

I hate noticed a new problems since I was diagnosed. Since then when I get a stomach illness (not glutening) I have a period where I am nauseous in the morning for a while afterwards. It happens every day in the morning. I feel nauseous and sometimes throw up. I was wondering if anyone had any insight into this. Last year when this happened it lasted for 3 mos. I was sick earlier this year and it lasted a couple of days. I was sick Tuesday and Wednesday and it happened this morning (what I first thought was a continuation of the illness). This never happened before I was diagnosed, so it seems like it has to be celiac related in some way.

Confused With Celiac Diagnosis

Thu, 09 Feb 2012 12:35:35 +0000

I am new to Celiac Disease and the forum. I'm not really sure where to post, but would like some input into my diagnosis. Thanks

On January 19, I was diagnosed with Celiac Disease. I am a bit confused in that I have no outward symptoms and think I feel fine. I think! I had a routine colonoscopy in Dec. and that was normal. The gastroenterologist was more concerned about my anemia. I was referred to a hematologist who ordered more tests. I do not have any of the GI symptoms and my biopsy evidently came back normal. I have also had a CT scan of my abdomen and that was normal. The only symptoms I can say I have are the Anemia and have found out I am also Vitamin D deficient. Since then I have been reading information and looking at this site. According to my Celiac Panel, the tTG is <3 � normal, IgA is 390 � normal, Antigliadin ab, IgA is 13 � high (11-17- equivocal) Can I really have Celiac Disease with these symptoms and high on one area of Celiac panel? Based on what I read somewhere, the tTG level is the more accurate reading.

New And Feeling Ick!

Wed, 08 Feb 2012 22:17:51 +0000

Hi all,this is my first post. After searching and searching trying to figure out what was wrong with me ( two docs just smiled and made suggestions on what I could try ) I decided to take myself of gluten,my nana and sister are both celiac. I went off all gluten last Monday,and was feeling better within two days! It was great,I felt the best I have in a very long time. Then my honey bought me some Hershey milk chocolate bars,and some snickers minis. According to what I found online these should be fine but I feel so sick! I had a Hersheys bar last night,and a few snickers today. My head is pounding and I feel sick to my stomach. On top of that I have pain in my legs like I remember growing pains feeling like. Could those candies really have gluten? I'm also itchy and my sinuses hurt. I felt like this (and worse) everyday for the past two years. I was so happy to be feeling better and new I just feel low. Thank you in advance for any help!

Trying To Get My Sister To Be Tested

Wed, 08 Feb 2012 09:50:09 +0000

I was diagnosed almost 6 months ago. I immediately told my sister to tell her doctor that I was confirmed Celiac and to request the bloodwork for herself. She's been less than enthusiastic about this. What is killing me is that she's been suffering from an "unspecified auto-immune disease" (her doctors' words) for 10+ years. I don't think she's EVER been tested for Celiac...?!?! Right now I'm far away and can't really get on her case about it effectively (I'm in Poland, she's in Los Angeles) but I can't stand it. So, although money isn't an issue for her, I am going to offer to pay for her testing to get her to understand how strongly I feel about this.

What I need is to be able to tell her what tests to tell her doctor to run. My bloodwork was done in Poland and the results are therefore in Polish...not sure how to translate them specifically so that the doctor in the US requests the proper tests.

Can anyone tell me what tests she should have done?

I can then send her that info plus a check. She goes to the doctor regularly because of her various health issues and I know she has bloodwork drawn at least once a quarter...I figure she might not make a special trip for this BUT she could bundle these tests in the next time she has blood drawn.

Any info would be greatly appreciated.

Thanks.

Please, Not Dairy Too!

Wed, 08 Feb 2012 06:19:34 +0000

Oh damn...I think I do have a problem of some sort with dairy, corn, or beans. But it doesn't happen all the time, so I'm confused.

Tonight for dinner I made a Mexican casserole dish: chicken, sweet red peppers, onion, garlic, zucchini, corn, canned jalpeno peppers (mild), gluten-free chipotle sauce, gluten-free salsa, topped with some lowfat shredded Mexican cheese. Accompanied by homemade Cuban black beans (made with peppers, onions, garlic, and some vinegar and spices), and eaten with some lactose-free sour cream and gluten-free guacamole. It was delicious. I especially enjoyed the very creamy lactose-free sour cream (I've been avoiding dairy most of the time lately)! I took a Lactaid pill anyway due to the cheese on top of the chicken dish. I also drank down a huge glass of water that had Apple Cider Vinegar in it (for the stomach acid).

Now it's 2 hours later and I've been burping like crazy. Burp, burp, burp. The burping started about a half hour after I finished eating. And a tiny bit of reflux (but it's not burning my throat or anything). I don't feel especially bloated and so far there's no gas. I am relatively certain that nothing I ate contained any gluten (I was very careful and checked everything).

So I'm thinking....was it the beans, the corn, or the dairy? Because those are the only things I consider really suspicious. The food was not spicy, it was really rather mild.

I have been able to eat some dairy with no problems whatsoever. For example: lactose-free yogurt (no reaction at all). Gluten-free pizza made with cheese (no reaction at all). Some Lactaid milk in my scrambled egg (no reaction at all). If I eat more than a certain amount of dairy, it seems that my stomach doesn't seem to like it, whether I have a Lactaid pill or not.

So...what do you guys think? I was going to take a generic gax-x, but realized it was chewable and probably not gluten-free. Thinking of taking a digestive enzyme (unless now, at 2 hours later, it might be too late for that). Or maybe having more apple cider vinegar, but this time with some baking soda mixed into the water.

I tested negative for Celiac but my IgA was very low. I have not tested for anything else (casein, corn, soy, egg, etc).

I'd appreciate your thoughts. I really don't want to eliminate another food from my diet, but.....uuuuurgh....maybe I'll have to.

I'm So Bummed

Wed, 08 Feb 2012 04:05:53 +0000

i'm so bummed. i had a positive biopsy, but negative bloodwork, my stupid doc told me i don't have celiac, but maybe i have a gluten sensitivity, she made it out to be no big deal, she even said, it's better because you don't have to be so stringent. i know she's just dumb and that i do have celiac, but part of me wanted to believe her. so, i've been gluten free, and feeling 10,000 percent better, my stomach was calm and it was really weird to eat and NOT feel that burning pain an hour later. then night before last we went to Panda Express, i thought, i'm not eating any wheat or anything, so it should be fine, i didn't eat anything breaded, just chicken and mushrooms and white rice, i thought i was safe, but no, the next day everything made me sick, dinner gave me the usual bad cramps, not full on D, but crampy and the burning was back. i just looked at their website and saw that what i ate had wheat in it, they don't offer any gluten-free foods other than white rice. today my gut is settling back down, but now i know i must be vigilant, not just non-chalant about not eating blatant wheat foods. i feel like i really do have celiac and i am so bummed, i thought maybe i was just being paranoid of hypochondriac-ish or something, but no, i really do have to be careful...i'm so bummed...

I Hate Everything

Wed, 08 Feb 2012 00:47:35 +0000

been gluten free one year. cried in the grocery store today for the first time. it was the second store that didn't have what i came for, gluten-free rice porridge (had a "temporarily out of stock" sign) even thought there was a whole isle of gluteny porridge that they never run out of

I'm sick with six days of fever and infection, my mouth is full of ulcers and i can't chew anything, i just wanted something soft to eat besides chicken stock which i have to make myself from scratch or mashed bananas

I just want to eat some effing ice cream. if i could eat that, i wouldn't be starving and losing weight so fast, but no i can't do dairy and even though boyfriend and i combed all the nearby stores, NOWHERE has any effing sorbet, it's like this country never heard of a milk allergy

i hate walking thru the ice cream isle and crying because i can't have anything but a box of popsicles that are only probably 10 calories each and won't help me keep from starving

the only sorbet i know where it is is in blanchardstown , usually i have to ride my bike 40 minutes or so to get there, it's a nice treat after exercise but i'm in no position to be travelling that far in my sickness

I bought peanut butter and jam but I don't have any appetite. i just made more chicken soup and i forgot to put in salt because I am stupid. my brain has been roasting for days and i'm gonna try to go to work tomorrow anyway because i'm tired of being cooped up at home like this and i can't stand calling in, i really can't, not when i've already called in three times... i have a doctor's note that says i don't need to come in until the 9th but i tho't that was wednesday so i already told them wednesday even tho the note says thursday and i don't want to call to correct myself

i stink like sweat and my apartment is a mess and i can't see because my head hurts so much

celiac is ruining what little appetite i actually do have that might could save me

thank you for letting me rant

First Time Being Glutened?

Tue, 07 Feb 2012 23:57:16 +0000

I am almost three weeks into my gluten-free (and casein-free) diet (in an effort to self-diagnose) and things have been going a little better, but then today I had a salad doused in Kraft Tuscan House Italian dressing, and 30 minutes later I had diarrhea. Now, I read that Kraft always explcitly states their gluten-containing ingredients on the package so I guess it's NOT gluten, and I guess this is my own fault because the label said it does contain a little milk, but I was still surprised that I would react to the potential casein as badly as I did. Do you think that maybe there is some gluten in there? Or could it just be the ruffage of the lettuce (although I do try to eat lots of fresh fruits and veggies so I don't think my body wouldn't be used to it). Could this not be a reaction at all? I've always wondered how I can KNOW whether I was just glutened (or casein-ed).

Thank you for your time!

Reaction To Buckwheat And Other Grains?

Tue, 07 Feb 2012 20:07:04 +0000

Does anyone else react to buckwheat and feels ill after having corn, rice, etc? I just ate some buckwheat (they say it's safe) and feel awful, brain fog, stomachache, bloating... If I eat rice for many days in a row I won't get constipated and too much corn does the same. It seems the one way I feel great is when I eat potatoes or roots and stuff. Anyone have this?

So Discouraged

Tue, 07 Feb 2012 18:53:26 +0000

I just can't seem to figure out a diet that workds for me. It seems like every time I try to add any food back to my diet I react. And I keep getting corned or soyed or something.

I've been struggling with vitamin deficiencies and thought I'd found something I could take. It had "vitamin E from soy", but was the closest I could find to gluten/corn free. I hadn't tried soy yet, so I thought, "maybe I can take these", but after a few days the psoriasis started coming back. Even though they cost a lot, I had to give them to a friend.

I got brave on Sunday and made biscuits using Bob's Red Mill gluten free multi-purpose flour. I used butter instead of shortening because butter has never bothered me. But the recipe called for milk.

I don't like milk - never have, so when I first went on the diet I knew I'd have to have milk in the house if I wanted to bake. I thought I was pretty smart when I decided on powdered milk. I figured it would work for baking, and it wouldn't go bad sitting in the cupboard.

Well, I THOUGHT I had purged my house of anything corn, but when the psoriasis started popping out again I looked. Sure enough, this stuff has vitamin D added, and vitamin D is almost always carried on corn.

No big deal, right? I can make them again but just use water. Except I am so discouraged I could cry. The biscuits weren't even very good - too "bean-y", but it was the first bread-like substance I had had in seven or so months. And I'm not sure if the milk was the only culprit. Could be the bean flour. I haven't even tried adding legumes yet.

I tried green grapes one day. Psoriasis. Added carrots, but seemed to react to them too. Leafy greens and yams cause emergency level digestive problems. The brown rice I had been eating bothers me now too, digestively, so I went back to white rice. Can't eat potatoes, but I'm not sure if it's because they are nightshades or if it is because most potatoes in the grocery store are gassed with ethylene (corn) to keep them from sprouting.

So I'm living on well washed chicken, occasional pork and once in a while a well washed steak, white rice, white cheddar, cauliflower, a little broccoli, eggs (fried in butter - for some reason boiled eggs make me nauseous now), and Hagen Daz or Starbucks ice cream (both made with sugar instead of corn syrup). And to tell the truth, I think the ice cream bothers me too. It's the only treat i have left, and I may have to give that up too.

I finally get in to see the nutritionist this coming Sunday. (Yes, Sunday! She is going to see me on her day off because it's the only time I can go. THAT shows some pretty strong caring on her part.) But what can she do for me that I haven't done already? I have stuck to eating things I know don't bother me and added foods back slowly, one at a time. Haven't found one single thing I don't react to. And now even my "safe" foods are giving me trouble.

I think I'm going to have to break down and have vitamins compounded. Then it won't matter if I never get to eat anything good again. At least these white spots on my nails will go away. At least I'l get some energy back. At least my hair will stop falling out. Maybe I'll even be able to sleep again.

Maybe I'll be able to walk and play guitar without pain - right now my psoriasis is on FIRE.

OK, I know I'm whining agian. Sorry. I guess I just need some more words of encouragement. And you guys are the best when it comes to encouragement. I truly thank God for all of you.