New To This And Still Not Sure If It Is Celiac Disease

[scaredblossom]

I had a endoscopy on Thursday and my Dr believes I might have Celiac disease and I have been reading everything and I must say I am freaking out!!! I am the pickiest eater, I hate veggies!! I love pizza and pasta, I've always had issues with dairy but still eat it in moderation! I pay for it dearly!! I have had stomach pains and problems for over 5 yrs! I know things have to change but I'm seriously struggling with this!!

[raea2002]

Oh you sound just like me! Welcome! When you realize how much better you feel you won't want to go back. Hope this helps. Hang in there. I'm only a month into my journey and the people on here are amazing!

[Takala]

Pizza and pasta can be made with gluten free ingredients, so you'll adapt. Celiac affects the part of the intestinal lining that can process dairy, so going gluten free might get you to where you can handle low lactose dairy such as hard cheeses and yogurt.

As for the other pickiness, once you figure out you can control how you feel by selecting better foods, including some vegetables, you are likely to get "less picky" and find them more attractive.

[Christine0125]

I think that overwhelming feeling hits us all. It's so much easier than you'd think. I just fed my family corn/quinoa pasta on Thursday night and everyone loved it (and I have some picky eaters in the fam). You will find plenty of alternatives for your favorite foods should your biopsy come back showing celiac.

[kwylee]

I was a major gluten & dairy hound prior to having to change my diet, and I was like you: never would have guessed that I could be happy not being able to eat the foods I practically lived for! But you know what I found? Once I got into the new way of eating (found substitutes that now I love) I was so much better that it became second nature and now I crave my gluten-free/DF foods. Without all the internal inflammation that was slowly but surely killing me.

This board is such a great way to get ideas, recipes, and to be able to vent, learn, help and get help. Everyone here knows what you're going through, so keep everyone in the loop as you make it through over any gluten free bumps.

[scaredblossom]

I have an app on my phone that shows restraunts with gluten-free menu items. I found that Larosa's has a gluten-free pizza that we're gonna try tonight. I fixed chicken and dumplings last night the usual way and I'm in sooooo much pain...I think I'm either gonna do this or starve lol!! I have to eat and can't handle eating this other crap I used to love!! Didn't realize almost everything I have is bad for me, no wonder I'm always in soooo much pain!! I'm not sure though if I'm supposed to change my diet before my tests on the 1st but I just can't take it anymore!!! Boy I'm gonna miss beer lol any substitute???

[beachbirdie]

I have an app on my phone that shows restraunts with gluten-free menu items. I found that Larosa's has a gluten-free pizza that we're gonna try tonight. I fixed chicken and dumplings last night the usual way and I'm in sooooo much pain...I think I'm either gonna do this or starve lol!! I have to eat and can't handle eating this other crap I used to love!! Didn't realize almost everything I have is bad for me, no wonder I'm always in soooo much pain!! I'm not sure though if I'm supposed to change my diet before my tests on the 1st but I just can't take it anymore!!! Boy I'm gonna miss beer lol any substitute???

You MUST keep eating gluten if you want accurate testing, as hard as that is.

If you don't need an "official" diagnosis, you can go gluten-free without a doctor, your body will tell you by feeling so much better.

There are ways to enjoy lots of familiar "comfort" foods without gluten, just need to look a little. Recipes abound on the Internet, and your library probably has lots of books you can try out. There are LOTS of wonderful books with gluten-free recipes. One good author to start out with is Bette Hagman, you can check out her books at any great Internet Book Emporium! Search around a little, you'll find lots of books that help you make yummy stuff with almond flour, coconut flour, or the usual rice/bean/tapioca/potato mixes.

As for beer, well, if you have a favorite already you might not be able to replace it gluten-free, but there are some good ones out there.

A lot of people like Open Original Shared Link or Open Original Shared Link, some find them a little mild and low-taste (or unpleasant aftertaste). You just have to try for yourself.

Another, called Open Original Shared Link, is very light and not very flavored, but it's out there. I don't know how your beer tastes run! We have a local brewery in my state (Oregon) called Open Original Shared Link, I've tried two of theirs and they are AWESOME! A newcomer on the block is Open Original Shared Link, which is getting good reviews so far.

[scaredblossom]

Well the Larosa's we went to didn't have a gluten-free menu so we went with regular pizza and I am miserable!!! The bw the Dr ordered is Celiac Serology and a small bowel series xray, about a month ago they found an intussusception! I have to be w/o food or drink from 10pm the prior day until after the tests at 830am and I'm supposed to work 6pm to 6am the day before...ughhh!! Anyone know if FMLA would be possible with this?

[scaredblossom]

After last nights fiasco I am scared to eat, I know what I can eat but I have no energy to get up and go to the store! Frito's are the only thin I have eaten today and I'm not sure if it's from last night's food or if the Frito's are making me sick! If it's made with corn it's ok right?? Of course the fact that I already did the grocery shopping before all this didn't help...kinda broke So when will I stop being so weak and tired all the time?? Seriously last night I was 15 min into supper when the pain and d got so bad and then nausea!! I was ready for bed at 930p but couldn't sleep for the pain!! Advil doesn't help I noticed!!

[Mnicole1981]

After last nights fiasco I am scared to eat, I know what I can eat but I have no energy to get up and go to the store! Frito's are the only thin I have eaten today and I'm not sure if it's from last night's food or if the Frito's are making me sick! If it's made with corn it's ok right?? Of course the fact that I already did the grocery shopping before all this didn't help...kinda broke So when will I stop being so weak and tired all the time?? Seriously last night I was 15 min into supper when the pain and d got so bad and then nausea!! I was ready for bed at 930p but couldn't sleep for the pain!! Advil doesn't help I noticed!!

That was me last night! I am so tired right now. It is probably last night's food. I tend to feel the effects for a whole day afterward.

[scaredblossom]

I wonder does anyone else ache all the time??? My hips are killing me and have been for quite some time! Does this go hand in hand?? Also I finally found something in the house that doesn't kill my stomach and is something I would normally eat, fried potatoes mmmmm!! I'm sure eating gluten foods in moderation won't screw up my tests rather than gorging myself!! I just can't bring myself to eat all that stuff again in large amounts even for the tests! I feel better tonight and still had a brownie that wasn't gluten-free just slight cramps!

[Pro]

I'm really glad I found this thread. I've been. feeling the same way. Today I had two chicken legs and it made my stomach hurt so bad, and I got really nauseous. I am just trying to eat gluten so I can test, but it's such a terrible and immediate feeling for me. I can't believe it, I love chicken, but I was grossed out while eating it and I didn't even touch the biscuit.. I was really stressed out the last week (got married and drove 21 hours to Disney World for our honeymoon where my wife drug me all over the 4 parks and stuffing lots of gluten down.) I think the stress is what caused me to act so badly to gluten for the first time I've noticed, and every time since. It took me a week to catch on to how I was feeling every time I ate and all the issues. Dairy products too. Thought I had to have had food poisoning, but now I'm pretty certain it's celiac. Hopefully get tested this week. I ate some rice for dinner and feel better for sure, but still my stomach is not happy. Nothing compared to when I ate the chicken though.

[scaredblossom]

I'm really glad I found this thread. I've been. feeling the same way. Today I had two chicken legs and it made my stomach hurt so bad, and I got really nauseous. I am just trying to eat gluten so I can test, but it's such a terrible and immediate feeling for me. I can't believe it, I love chicken, but I was grossed out while eating it and I didn't even touch the biscuit.. I was really stressed out the last week (got married and drove 21 hours to Disney World for our honeymoon where my wife drug me all over the 4 parks and stuffing lots of gluten down.) I think the stress is what caused me to act so badly to gluten for the first time I've noticed, and every time since. It took me a week to catch on to how I was feeling every time I ate and all the issues. Dairy products too. Thought I had to have had food poisoning, but now I'm pretty certain it's celiac. Hopefully get tested this week. I ate some rice for dinner and feel better for sure, but still my stomach is not happy. Nothing compared to when I ate the chicken though.

I'm so sorry you had a rough day!! I could barely eat yesterday, I had about 3/4 of a small hot pocket at work around 10pm! It of course stayed down long enough for me to be past the 12am deadline for nothing to eat or drink for my tests today!! I'm hungry but afraid to eat!!

[Doublelsega]

Since December 2011 I have been undergoing testing for Celiac. The blood test come back "definately" positive. The upper endoscopy was "inconclusive" so I have had the genetic blood testing done and the capsule camera done. I have noticed alot of strange things happening lately,,my mouth tends to stay sore, my skin is really dry and scaly (never had problems with that before)it is all I can do to get up and move after sitting for a while. On Monday I ate 1/4 sub on wheat bread and went to itching (no rash or hives) and my lips seem to feel swollen along with the stomach cramps and diarrhea shortly after eating. Yesterday I noticed that after eating a biscuit again my lips felt swollen. Is this anything to do with Celiac? I get all my latest results on May 11.

[kwylee]

Since December 2011 I have been undergoing testing for Celiac. The blood test come back "definately" positive. The upper endoscopy was "inconclusive" so I have had the genetic blood testing done and the capsule camera done. I have noticed alot of strange things happening lately,,my mouth tends to stay sore, my skin is really dry and scaly (never had problems with that before)it is all I can do to get up and move after sitting for a while. On Monday I ate 1/4 sub on wheat bread and went to itching (no rash or hives) and my lips seem to feel swollen along with the stomach cramps and diarrhea shortly after eating. Yesterday I noticed that after eating a biscuit again my lips felt swollen. Is this anything to do with Celiac? I get all my latest results on May 11.

Hi doublelsega! I see this is your first post, welcome to the board! I happened to pick this up because I'm subscribed to this particular thread, and although you may certainly get some response by others, but you may also want to repost in a brand new thread so that it could be viewed by more folks who have possibly experienced what you have. Or a helpful board administrator may do it for you.

I love this board because there are so many knowledgeable and sincerely caring people who monitor and respond. I personally haven't experienced what you have but it sounds very familiar after reading hundreds of posts in the past couple years and I just want your post to be seen by forum members with first hand knowledge of this symptom.

So glad you're here!

[Doublelsega]

Hi doublelsega! I see this is your first post, welcome to the board! I happened to pick this up because I'm subscribed to this particular thread, and although you may certainly get some response by others, but you may also want to repost in a brand new thread so that it could be viewed by more folks who have possibly experienced what you have. Or a helpful board administrator may do it for you.

I love this board because there are so many knowledgeable and sincerely caring people who monitor and respond. I personally haven't experienced what you have but it sounds very familiar after reading hundreds of posts in the past couple years and I just want your post to be seen by forum members with first hand knowledge of this symptom.

So glad you're here!

Thanks for the welcome! I am new to this board and to Celiac so I am learning. I appreciate any help and suggestions. I look forward to reading more from those of you that have been through the newbie things!

[scaredblossom]

Update: Endoscopy biopsy came back fine, small bowel series came back fine, blood works still out if the blood work is ok they want to check my colon since its been 12 yrs since it's been checked...this doesn't make me feel any better!! What now???

[scaredblossom]

Thanks for the welcome! I am new to this board and to Celiac so I am learning. I appreciate any help and suggestions. I look forward to reading more from those of you that have been through the newbie things!

The Dr did say the barium went through my system fast! We went to Cracker Barrel right afterward and I ate bisquits and gravy and had diarrhea in no time, put it this way we were still in the store...I had pains most of the day as well! Had a safe supper steak and baked potato and was mostly fine, much less pain! At 130am I woke up ate 2 brownies and was in pain again!! HELP!!!

[ravenwoodglass]

The Dr did say the barium went through my system fast! We went to Cracker Barrel right afterward and I ate bisquits and gravy and had diarrhea in no time, put it this way we were still in the store...I had pains most of the day as well! Had a safe supper steak and baked potato and was mostly fine, much less pain! At 130am I woke up ate 2 brownies and was in pain again!! HELP!!!

If you are done with celiac related testing give the diet a good strict try for at least a couple of months.

[ravenwoodglass]

I'm really glad I found this thread. I've been. feeling the same way. Today I had two chicken legs and it made my stomach hurt so bad, and I got really nauseous. I am just trying to eat gluten so I can test, but it's such a terrible and immediate feeling for me. I can't believe it, I love chicken, but I was grossed out while eating it and I didn't even touch the biscuit.. I was really stressed out the last week (got married and drove 21 hours to Disney World for our honeymoon where my wife drug me all over the 4 parks and stuffing lots of gluten down.) I think the stress is what caused me to act so badly to gluten for the first time I've noticed, and every time since. It took me a week to catch on to how I was feeling every time I ate and all the issues. Dairy products too. Thought I had to have had food poisoning, but now I'm pretty certain it's celiac. Hopefully get tested this week. I ate some rice for dinner and feel better for sure, but still my stomach is not happy. Nothing compared to when I ate the chicken though.

First off congrats on the wedding. Wishing you much happiness. Do keep eating gluten until your celiac related testing is done and then give the diet a good strict try. When you go for testing do make sure the doctor does stool testing to make sure that it isn't a case of food poisoning since these symptoms came on suddenly. Hope your feeling better soon.

[scaredblossom]

If you are done with celiac related testing give the diet a good strict try for at least a couple of months.

That was what I was thinking after reading how sooo many have been misdiagnosed, hoping something positive comes out of all this!!

[scaredblossom]

Feeling pretty great tonight We went to LaRosa's tonight in Oxford, I ate gluten-free pizza then we went to Krogers and found a pretty good selection of gluten-free foods and such! I also got me some fresh fruit! I made me a container filled with cut up strawberries, kiwi, black berries and grapes for work for the next three nights!! Oh yeah bought gluten-free brownie mix and cornbread mix....it is very expensive though!! Oh well maybe things will be ok!!

[tom]

Blossom's not so Scared anymore, eh? Looks like you're on the right track.

My money's on it being more than ok.

I'm really glad I found this thread. I've been feeling the same way. Today I had two chicken legs and it made my stomach hurt so bad, and I got really nauseous. I am just trying to eat gluten so I can test, but it's such a terrible and immediate feeling for me.

...

Make sure the Dr knows this. The eating itself is a test w/ a result, but not all Drs inquire about it.

I'd even want to call the office if I were towards the end of the challenge anyway just to see if a nurse or whoever could see if the appt could be sooner.

As I keep saying, there's no consensus on duration or daily amount for a gluten challenge.

Maybe future ex-vivo testing will replace the challenge. (Not feasible yet but I like the concept of snipping a bit of intestine, popping it in a testtube and feeding THAT the gluten! "Peptide fragments" maybe?)

Pro, have you started your own thread? Not that you have to but it's easier when ppl ask questions like "Is your appt far off?"

[scaredblossom]

Ugh ok so last night was rough, one slice of gluten-free pizza, and a large bowl of fruit wasn't enough to get me through the night! I got two bags of plain lays chips and about a quarter of a 20oz Dr Pepper, checked my sugar about 30 mins later and it was only 91...not great considering it should've been higher after eating! Also is it strange that I seem to be getting headaches when I eat any type of potatoes? Just seemed to notice getting a headache every time I eat potato products, maybe it's not related but it seems to only happen then!

BTW If at anytime I am rambling too much or need to start a new thread please let me know =}

Forgot to add before that in 05 I was diagnosed hypoglycemic, but it seemed to resolve itself with diet!!

All in all aside from low blood sugar, hunger, headaches, and constant joint pain I am feeling better lol odd to feel better with so many things still going on huh!! Such is life!!

[ravenwoodglass]

Ugh ok so last night was rough, one slice of gluten-free pizza, and a large bowl of fruit wasn't enough to get me through the night! I got two bags of plain lays chips and about a quarter of a 20oz Dr Pepper, checked my sugar about 30 mins later and it was only 91...not great considering it should've been higher after eating! Also is it strange that I seem to be getting headaches when I eat any type of potatoes? Just seemed to notice getting a headache every time I eat potato products, maybe it's not related but it seems to only happen then!

BTW If at anytime I am rambling too much or need to start a new thread please let me know =}

Forgot to add before that in 05 I was diagnosed hypoglycemic, but it seemed to resolve itself with diet!!

All in all aside from low blood sugar, hunger, headaches, and constant joint pain I am feeling better lol odd to feel better with so many things still going on huh!! Such is life!!

It might be helpful blood sugar wise to check it before you eat then at 1, 2 and 3 hour intervals after. Do this with each meal and record the findings and take them to the doctors office at your next visit. You can also ask your doctor to do an A1c which will show your BS average over a 3 month period.

If you can go with more whole food and less stuff like pizza, chips and soda for a while that would be a good thing.