Newbie And Worried...

[okieinalaska]

Hello, my name is Amy and I am 41 and live in Alaska. For over a year I have been having pain in my abdomen and a few other symptoms. It would be bad for a few months then improve for a long time then this fall it got worse again. What finally sent me to the doctor (I had just lived with it till then)... I was shopping at Lowes and felt like I got stabbed in the upper right side of my stomach. I had to sit down, I felt like I would throw up etc. Then it passed after a minute. I figured it was my gallbladder.

We are retired military (hubby just finished 20 years!) and it took a while (over a month!)to get the ultrasound I needed to look for gallstones. When it finally came back normal even my doc still thought it was probalby my gallbladder. He is a great Doc though and suggested we do a bunch of other tests as well as schedule a HIDA scan for me in case it was still my gallbladder. He even asked me how I wanted to proceed, if I still thought it was my gallbladder etc, he never once tried to tell me to live with it or poo poo me. He was willing to going the distance for me!

Well one of the other tests was bloodwork for Celiacs. After 10 days (this afternoon)) they finally called me and the nurse told me the doc thinks its celiacs. When I asked her to explain more (about test results) she was unable to except that it was from the bloodwork results. : ( I was so shocked today I didn't ask many questions. I will call back on Monday and ask then. Sounds like I need to ask for a copy of all the bloodwork? I was told not to change my diet until after the biopsy.

Long story short, we canceled the HIDA scan for now (it was schedule for Tuesday) and I am waiting on a referral to gastroenterologist for an upper endoscopy and biopsy. I called to get the referal appointment but was told the gastro doc had to look at my bloodwork and then they would call me on probably Tuesday to schedule the appointment.

Of all the things he said he was testing me for I remember thinking god I hope it's not Celiacs as I don't think I could be that strict on my eating. Well of course now I am worried. I am a terrible eater, I am the first to admit! But I am trying to tell myself I can do this but the more I research about cross contamination and seperate cookware, plates and stuff....I am freaking out.

Plus the thought of never having another Twinkie again or my homemade famous cinnamon rolls is very depressing.

I have two kids age 10 and 8, I am worried about them because it can be genetic?

My dad, his mom and his brother all have diabetes and I hear there's a link to celiac? but they have adult onset not type 1. Does that make a difference?

Some of the symptoms I have had:

bloating

gas

pain

headaches

stinky fatty sludgy stools

I felt like I could feel the sludge moving through my intestines sometimes

constipation

diarhea

nausia (but not often)

Frequently I would have pain at 5pm when I would get home from work and wake up with pain in the middle of the night around 4 or 5am with pain

Usually low grade pain, maybe a 3 on a scale of 1-10 but sometimes worse.

I haven't lost any weight but over the last three years I have gained 15 pounds. But I attributed it to going from playing ice hockey and shoveling lots of snow in the driveway to doing nothing. (We had moved from Juneau to Eagle River) This last year I have started playing ice hockey again and I do Jujutsu 2 times a week but still haven't lost any weight.

Sorry for so long a first post! I am reading and learning from older posts and so far I have found it very helpful (but a little overwhelming!) I do feel lucky after reading so many people saying they suffered for YEARS that I possibly have an answer after only one. So I am trying to count my blessings that at least I might have an answer now!

Amy in Alaska

[mushroom]

Hello, okieinalaska, and fear not. A diagnosis of celiac is definitely not a death sentence, it is a life sentence, for living, and anything you can do with gluten, we can do gluten free

See for example the following recipe:

Cinammon Rolls

Makes 8 or 9 rolls

INGREDIENTS

2 tablespoons shortening (I used butter)

1/4 cup sugar

2/3 cup of warm milk

1 packet yeast (about 1 tablespoon)

1 egg

1/4 cup canola oil

1/2 cup potato starch

1 cup corn starch

1/4 teaspoon baking soda

2 1/2 teaspoons xantham gum

2 teaspoons baking powder

1/2 teaspoon salt

1 teaspoon vanilla extract

TO SPRINKLE PLASTIC WRAP

1 - 2 tablespoons sugar

FILLING (*see note)

1 cup brown sugar

1 1/4 teaspoons cinnamon

1/3 cup chopped nuts - optional

DIRECTIONS

Preheat oven to 375 degrees.

Measure warm milk and add yeast to milk. Whisk well to fully dissolve. Allow to "proof" for about 5 minutes.

In medium bowl, combine shortening and sugar. Mix well.

Add milk/yeast to sugar mixture. Add remaining ingredients. Mix very well, being sure to remove all lumps. Dough will be quite soft (**see note).

Lay out a 2 gallon size Ziploc bag that you have cut down the sides (leave bottom in tact so you create a really big rectangle) (or use plastic wrap - wrap is thinner and more of a pain in my opinion). It should cover at least a 13 1/2" x 13 1/2" square. Sprinkle sugar on the wrap. Lay ball of dough on top of that. Then pull out another sheet of wrap or Ziploc and gently lay over the dough. Pat the dough down into a roughly squarish pancake. Lift the top piece up and then reposition it. Use a rolling pin to roll out the dough in between the two layers of wrap. Occasionally you'll have to lift and reposition the wrap because it gets "stuck" under the edges. You might have to occasionally flip the whole thing over. Make sure that when you're done you've got ABOUT a 13 1/2" x 13 1/2" square of dough. (You can wash and reuse the Ziploc bags. These are really useful for all sorts of rolled dough recipes since gluten-free can be very sticky.)

Remove top piece of wrap/bag. Combine filling ingredients. Spread evenly across dough's surface. Leave about a 1 1/2" sugar free edge because when you roll the dough all the sugar shifts and fills this in; otherwise all the sugar spills out. Use the bottom piece of wrap/bag to lift the edge of the dough and start to roll it up forming a long cylinder. Start with the sugary edge, which will be the center of your roll and roll toward the sugarless edge. Cut off or trim up the irregular ends of your "log". Then cut into 8-9 slices of similar size, about 1 1/2" wide. Place rolls into a greased round glass pie pan.

At this point I cover and put in the fridge if I'm making them the night before.

Bake approximately 20 minutes, until tops are lightly browned.

Notes:

* As is the rolls are really sweet. My parents and I loved them that way, but I cut the filling back after the first time because my DH and DS said they were too sweet.

** The mixture is very, very soft - I was convinced that I'd made a mistake, but that's just the way it is.

GLAZE

¾ cup powdered or confectioner's sugar

1 teaspoon vanilla extract

milk to thicken

Combine powdered sugar, vanilla, and milk to make glaze. The amount of milk you use will depend on how thick you want the glaze to be. Stir until all lumps are dissolved. Drizzle over warm rolls.

I've also made a cream cheese frosting for the tops which I prefer over the glaze - 4 oz. cream cheese, 2 TBS butter, 1/2 tsp vanilla, 1 cup powdered sugar all room temp and beat together.

But I am jumping ahead of myself. It certainly does sound to me like the diagnosis is accurate and I would be surprised if the biopsy is negative, although it does happen. And this does not mean you should not eat gluten free, it just means that it is a false negative and/or you don't fit the criteria for diagnosis as a celiac. Non-celiac.gluten intolerance is far more prevalent than celiac disease and requires just as much careful avoidance of gluten as celiac itself.

Overweight is just as common as underweight in celiacs, so you can't use that as a criterion for diagnosis although many doctors do Many of our posters have thought they had, or have been diagnosed with gallbladder problems, and had their gallbladders removed, only to find that it made no difference to their symptoms It sounds like you have a very good, hep doctor in whom you can place your trust. Good luck on the GI appt. and endoscopy, and do remember, eating gluten free is not the end of good-tasting food; it just means you have to learn to cook differently and maybe explore new foods

[ravenwoodglass]

Welcome to the board. It sounds like you have a great doctor. Living gluten free can seem a bit overwhelming at first but it is so very worth it in the long run. Trading gluten for a long and healthy life is not a bad thing. After you have the biopsy done start the diet strictly. You don't need to wait for the results and false negatives on biopsy and blood work are not uncommon. With your having positive blood work that is pretty diagnostic in itself. As for your kids just have them tested periodically and watch for signs. Not all of us have strong gut issues for some the effects can be mood and learning related or even joint and muscle pain. I'm thankful for you that your doctor did testing and didn't just take out your gallbladder and give you a bunch of pills to relieve symptoms while your body went into self destruct mode. You have found a great place for info and support and I hope they get the biopsy done soon and you can get on the diet and start to heal.

[Emilushka]

Hi Amy!

I'm the only one in my family who's been diagnosed Celiac.

We can help you learn to eat gluten-free and get your kitchen in ship-shape order. My husband still eats gluten in my kitchen and there are ways to make that OK (as long as you're not one of the super-sensitive Celiacs).

Get the endoscopy done, then one the procedure is over go for the gluten-free diet like ravenwoodglass suggested. Just think how nice it'll be to feel better! Hopefully the diet will be able to do that for you and it really is Celiac.

The only other warning I have is that sometimes people need to eliminate more than just wheat/gluten. For me, it's been dairy too. For others it's been corn, soy, and many other things. I think trouble with dairy is most common at the beginning of the healing process, and then for some people, these intolerances go away with time (6 months-1 year or so) and then you can slowly reintroduce the food that was giving you trouble. Just not wheat. If you're Celiac, no more wheat for you.

My favorite baked good replacement has been from Katz's - they make all sorts of tasty chocolate and cinnamon goodnesses that help me feel more normal again. You buy them frozen and then warm them up at home. They're dairy- and gluten-free, and I think also nut-free. While you're still working on learning to cook gluten-free they might give you some comfort food without too much effort, which can really be helpful as you adjust.

Think about it this way: Celiac gives you the best way to heal because it doesn't require drugs or surgery. Your body will heal itself if you let it. You just have to know that you need to let it do that, and that's where the endoscopy and blood work come in.

Good luck. It's frustrating and scary to have symptoms for so long without answers, and it's also scary to face a big change in how you live. But you can totally do this! We all do, and we will help you through!

[okieinalaska]

Thank you for all the replies. And for the Cinnamon roll recipe! That's awesome. : )

I literally found out about this before leaving work to come home yesterday. I told my husband on the phone and when I got home we discussed it. I also told him I had to eat normally until my test. He was glad it wasn't my gallbladder and I was still wishing it was my gallbladder.

Before bed I had a bowl of cereal and he said to me "uh, that has wheat it in you know". I don't know if he was trying to be funny or helpful but I got really angry and told him a) after I have my test I can't eat wheat but for now I eat normally and b)I don't EVER need you to be the food police. I don't tell him to eat his vegetables (he NEVER eats vegetables) and I reminded him of this. How do I go off all wheat AND keep from killing my husband? I don't know if I can do both, LOL.

On a side note, woke up with no water this morning!!!! I thought maybe a pipe had froze but the neighbor (Mr Fix it) came over and it turns out it was just a loose wire, so easy fix and we have water now! Hurrah!

Amy

[mushroom]

Aw now, don't be so hard on hub - I am sure he was not trying to be mean. Some of us do appreciate a reminder now and then when we do mindless eating. I could have used a reminder about potatoes the other day. Was making hub some potato salad which I had not done since I had to quit potatoes, and since I am a cook-by-taste cook, before I knew what I was doing I was tasting the damned potato salad to see if I had it right . ARRGGGH!!! I am just not used to cooking things I can't eat

LOL here, but they do say that gluten can make some people irritable

By the way, I take no credit for the cinnamon roll recipe - it was posted on here a week or so ago by another member (just so she doesn't get annoyed with me).

[ravenwoodglass]

LOL here, but they do say that gluten can make some people irritable

And you may even be a bit more irritable for a couple of weeks after you have first gone gluten free as many of us do go through a withdrawl.

Don't be too hard on the hubby, if he does play 'food police' with you it is because he loves you and wants you to get better. It is better that he remind you when you might make a mistake than to be like some freinds and family of some folks on here who seem to do everything they can to cross contaminate us.

The diet will take some getting used to but you will get used to it. It gets easier when we finally start to feel really good. Sometimes stuff we never even would think are gluten related resolve, like moodiness and irritability.

[sb2178]

Yeah, I wish someone else would be my food police. Or even just a proof-reader... imagine, a nice little gremlin to read all the food labels. an infallible little gremlin. (I missed barley malt extract on a label this week, and ouch was/is the consequence. or else starbuck's contaminated me... or a combination.)

But, there are lots of people who do shared kitchens well and even going entirely gluten-free isn't that hard as long as you know how/are willing to cook some. It's a lot to take in (my diagnosis took a long time, so I had lots of adjustment and back and forth time), but it's very do-able.

suggestions: go eat some really, really good pizza and croissants in the next week.

Then: buy a cookbook if you have the budget to splurge, just as a reminder that there are lots of things you can eat and then you won't have to filter so hard for the first few weeks. or pull out some recipes you already use like pork chops or risotto or twice baked potatoes or polenta or sweet potatoes...

Pre-biopsy: go ahead and clean out the kitchen and scout out grocery stores so you can come home and start gluten-free immediately. be sure to have some gluten-free favorite comfort/junk food around, whether it's applesauce, ice cream, popcorn, chips, or fake oreos. the first few weeks are hard, so having safe snacks around is helpful and can avert bouts of self pity. because, if you have it, why are you feeling sorry for yourself? for many reasons... but at least you aren't hungry!

[Skylark]

You will feel SO much better off gluten if you're celiac. You'll be fine on the diet. Yes, you have to skip the Twinkies but that's not something that ever should have passed your lips in the first place, especially with type 2 diabetes in the family!

Celiac is genetic, and your children should be tested if it turns out you're celiac. If your blood tests are positive no matter what the biopsy says you are "latent" celiac and should go off gluten. Developing celiac disease is a process, and in many people the antibodies can appear before there is a lot of damage on endoscopy. You don't want to push things to where there is a lot of damage, because then it can take years to recover and you can get other autoimmune diseases. There is a genetic link between type 1 diabetes and celiac, but not type 2 adult onset.

Remember that celiac is the only autoimmune disease that can be treated by diet. We are fortunate really, as it doesn't require ongoing medical care or Dr. visits once we've worked though any malnutrition issues. You will be just fine, and feel well again.

[okieinalaska]

I would like a gremlin too, sign me up. : )

We had to go to Whittier ALaska where I am photographing a friends wedding. It's beautiful here in the summer with lots of outdoor stuff to do. In the winter...not so nice. You have to drive through a long train tunnel that opens to car traffic every 1/2 hour to get here (they close the tunnel at 10pm). There are only 2 restuarants open and one is closed to the public today! I am glad I am still allowed to eat normal because I don't know what I would be eating today. The grocery store is like a convienence store but not as convienent, LOL. I guess in the future I will have to be prepared for situations like this.

I stopped at the library yesterday on our way out of town and found two books

Celiacs Disease A guide to living with gluten intolereance by Bower and the other is a cookbook The Glueten free gourmet cooks fast and healthy by Hagman. They had the book by hassleback and I put it on hold but someone checked it out before they pulled it so I have to wait. Are there any books or cookbooks you highly recommend?

I love bento boxes and making my lunch so I guess I just will get more creative.

Thank you all for the advice,

Amy

Yeah, I wish someone else would be my food police. Or even just a proof-reader... imagine, a nice little gremlin to read all the food labels. an infallible little gremlin. (I missed barley malt extract on a label this week, and ouch was/is the consequence. or else starbuck's contaminated me... or a combination.)

[FooGirlsMom]

Hi,

Just wanted to lend some support here. You got great responses. As others said, you may find you have to be diligent and a bit boring with your diet for the first several months and you might find you have secondary allergies (I found dairy, corn & soy to be problems and now I feel MUUUCH better). But it will get better. From my own experience years ago going on gluten-free, sugar free & dairy free diets (I did this just to feel better & stop symptoms without knowing the cause) your body will heal. Once it does, you will probably find you can eat more complex foods like baked goodies etc. It can be a shock at first but once you start eating differently, you'll eventually feel so much better, it'll be worth it.

There are lots of homemade yummies you can have so hang in there!

FooGirlsMom

[GFinDC]

Hi,

Try doing a search on snack ideas or breakfast ideas in the top left search field on the site. Look for the threads with the most replies and read them.

We all been doin' this for a while and are still alive and kickin' too! It all gets easier after you learn the basics and do it for a while, just like anything else you have to learn.

The recipe section of the board has zillions of things to make and eat, and they are mostly very healthy for you.

Last time I was in Alaska they had a warning on the radidio that there was a mean bear loose and try to make sure you wuz packing' a 45 or a high caliber rifle ifn yuh wuz out shopping. Of course my co-worker and I got stuck in the mud in the boonies and the bar didn't find us and eat us even tho we didn't have a big gun with us. Good chance the bar won't et you either! Stick around and read the coping with forum too and get some edgecatejun cause this a is a lifetime change in diet.

Welcome and just know we is pullin' for ya too!

[Loey]

Hello, my name is Amy and I am 41 and live in Alaska. For over a year I have been having pain in my abdomen and a few other symptoms. It would be bad for a few months then improve for a long time then this fall it got worse again. What finally sent me to the doctor (I had just lived with it till then)... I was shopping at Lowes and felt like I got stabbed in the upper right side of my stomach. I had to sit down, I felt like I would throw up etc. Then it passed after a minute. I figured it was my gallbladder.

We are retired military (hubby just finished 20 years!) and it took a while (over a month!)to get the ultrasound I needed to look for gallstones. When it finally came back normal even my doc still thought it was probalby my gallbladder. He is a great Doc though and suggested we do a bunch of other tests as well as schedule a HIDA scan for me in case it was still my gallbladder. He even asked me how I wanted to proceed, if I still thought it was my gallbladder etc, he never once tried to tell me to live with it or poo poo me. He was willing to going the distance for me!

Well one of the other tests was bloodwork for Celiacs. After 10 days (this afternoon)) they finally called me and the nurse told me the doc thinks its celiacs. When I asked her to explain more (about test results) she was unable to except that it was from the bloodwork results. : ( I was so shocked today I didn't ask many questions. I will call back on Monday and ask then. Sounds like I need to ask for a copy of all the bloodwork? I was told not to change my diet until after the biopsy.

Long story short, we canceled the HIDA scan for now (it was schedule for Tuesday) and I am waiting on a referral to gastroenterologist for an upper endoscopy and biopsy. I called to get the referal appointment but was told the gastro doc had to look at my bloodwork and then they would call me on probably Tuesday to schedule the appointment.

Of all the things he said he was testing me for I remember thinking god I hope it's not Celiacs as I don't think I could be that strict on my eating. Well of course now I am worried. I am a terrible eater, I am the first to admit! But I am trying to tell myself I can do this but the more I research about cross contamination and seperate cookware, plates and stuff....I am freaking out.

Plus the thought of never having another Twinkie again or my homemade famous cinnamon rolls is very depressing.

I have two kids age 10 and 8, I am worried about them because it can be genetic?

My dad, his mom and his brother all have diabetes and I hear there's a link to celiac? but they have adult onset not type 1. Does that make a difference?

Some of the symptoms I have had:

bloating

gas

pain

headaches

stinky fatty sludgy stools

I felt like I could feel the sludge moving through my intestines sometimes

constipation

diarhea

nausia (but not often)

Frequently I would have pain at 5pm when I would get home from work and wake up with pain in the middle of the night around 4 or 5am with pain

Usually low grade pain, maybe a 3 on a scale of 1-10 but sometimes worse.

I haven't lost any weight but over the last three years I have gained 15 pounds. But I attributed it to going from playing ice hockey and shoveling lots of snow in the driveway to doing nothing. (We had moved from Juneau to Eagle River) This last year I have started playing ice hockey again and I do Jujutsu 2 times a week but still haven't lost any weight.

Sorry for so long a first post! I am reading and learning from older posts and so far I have found it very helpful (but a little overwhelming!) I do feel lucky after reading so many people saying they suffered for YEARS that I possibly have an answer after only one. So I am trying to count my blessings that at least I might have an answer now!

Amy in Alaska

Welcome to the forum. You couldn't have found abetter group of people gathered together anywhere. They are wise and generous with their knowledge. I was only diagnosed last May and am still struggling to find my footing. I don't know what I would do without this forum and hope I never need to find out. There is a thread with recipes and cooking tis under the Forums. as for the wedding. I would pack a cooler of your own food in microwavable containers so you can make sure it doesn't get cross contaminated (that's if you're following a gluten-free diet by then). Does your husband know that if you are gluten-free the test results will not be accurate?

Loey

[okieinalaska]

Hi Loey, we just got back from the wedding and they actually had some gluten free items as one of the young girls has to eat gluten free. So I got to try a cupcake and it was very good. (as for twinkies touching my lips mentioned above, previosly it was all things in moderation, not a twinkie for all, LOL so same will go for gluten free cupcakes; I only had one)

I was just thinking in the future about what I would do. There was no microwave either. But I think I can handle it, I will just have to prepare, prepare, prepare. Camping and dipnetting menus next summer should be interesting. : )

As for my husband, I told him but typically I have to tell him info 2 or 3 times for it to stick. I swear stuff goes in one ear and out the other. He knows now for sure. And I think he was trying to be humerous but it wasn't working for me. : )

I just posted my bloodword info on a new topic, hope that's ok. Hopefully someone can tell me what it all means. : )

Thank you all again,

Amy