Drama-Queen

Anyone know about a good GI doctor in Wichita, KS? And a family physician?

I need to be monitored closely for now because I had extensive damage, including a bleeding ulcer in the intestine at the time of my diagnosis. My malabsorption rate is still at 964 according to my last fecal fat cell test (originally 2, 863), and is supposed to be down below 200, so I still have a long way to go.

I just moved here from Minneapolis, MN.

I have been discouraged so far about the lack of knowledge in the area about the need to be gluten-free! Everyone I have encountered so far, including my husband's family physician, look at me like I am an alien. Of course I suppose that this is what I should expect moving into the "bread basket" of our country, from a progressive state like Minnesota.

I also need a good allergist. For the past 3 years I have had chronic hives everyday, and was told by my last doctor "good luck, I hope they go away eventually". Fortunately I am on a cocktail of medicines that keep them under control, but I avoid alcohol, spicy food and coffee, as they aggravate my symptoms.

thanks

Katrina

Just remember this....

"No one expects the Spanish Inquisition!"

Other fish related movies:

"Big Fish" (duh)

"Amelie"-Suicidal goldfish named Blubber

In a fish called Wanda I have to say my favorite is a naked John Cleese on a bearskin rug with his black socks still on. Now that's funny, and awkward.

Oooh and then they should take tons of relaxants or something so they have no energy during the day.

If they are college age kids, they should have to go to school and resist the temptation of all the foods around them. And not only that but get up during a final and puke and come back and finish the fiinal. They should have to feel the torture of their friends talking about pizza for half an hour with no respect to them.

"I would like to buy a bowel"

Nice. That is going to make my day! Too bad I can't laugh too loud in the U of MN computer Lab.

Speaking of fish theme......

"You shall cut down the tallest tree in the forest...wiiiith. A Herring!!!"

"Gasp"

"No Sir knight, anything but that!"

Oh monty python how you cheer me up when I am glum

Since gluten can mess up your intestine sooo much it is hard to tolerate dairy right away on the gluten free diet. However, some people seem okay with it.

On the other hand some people have problems with dairy and not gluten. (lactose intolerant, casein intolerant, or just plain allergic) So what I would do is elliminate one or the other and see what happens with your symptoms, if they improve or not. Sometimes a diary helps to keep track of symptoms you are having so that you don't have to in your head. This is how I am figuring out my allergies. I am pretty sure it is that dastardly dairy that makes me break out in hives.

Try process of elimination and see what happens. What is there to lose? Not much, just symptoms.

-You wake up the next morning with hives because someone "gluten-contaminated" used your designated gluten-free towel.

-Your roommate uses your dishes without asking and leaves wheat flour all over the counter, because she says "I thought it wasn't that big of a deal. I know about your problem, but I don't care that much."

-You have had to move out of a dormitory because you had too many anaphalactic visits to the ER becuase of her sloppiness in the kitchen.

-You enjoy doing crosswords in the newspaper, just because the newspaper is gluten free.

One thing I found that helps me is high fiber! (not gluten of course). Buckwheat and Rice are wonderful.

Mary, I too was like a fountain every day until I got diagnosed. This is why my muscle and bones are in such bad shape. But knowing that my stomach is calm and my poop is regular makes getting out of bed a little easier. Sometimes when you are bleary eyed from the pain, stiffness, and joint pain, it is the highlight of your day!

"Now this is getting just too silly....."

Oh I love this forum! Off to go watch some Flying Circus!

Sorry I have been late to answer: Cracked rib due to bone density loss, moving to the parents cause I am in so much pain, endoscopy, yadda yadda yadda....etc.

Anyways, I used to be diagnosed as being intolerant to casein so I will try to make this recipe again using soy products. When I was diagnosed 4 years ago as being gluten, dairy, and soy intolerant, I used to use goat cheese because of the lack of casein in it. Sheeps milk is not okay however, if I remember correctly. I don't know for sure if this is true because of the new research that is out, or that I don't know about.

So don't quote me on this.

The problem with dairy alternatives is that it does not have a creamy texture. Instead of milk and cheese you could use silken tofu and your favorite flavor of cheese alternative. This might be creamy enough to work.

You could try this and experiment until the recipe is perfect.

Question is how long has it taken for you to get diagnosed? How long have you been gluten-free? I am now going on 2 months of being gluten-free and I am still losing weight, lost 26 pound in 2 months and am still losing. My doctor says it takes 6 months to a year for your intestine to start working properly again and actually absorbing what you take in. Talk to your doctor about your concern.....maybe they can help you, also look at how much vitamins and fiber you are taking in.....I am actually overdoing the amount of vitamins I get in my food. This is helping my energy at least. I have lost alot of bone density and alot of muscle according to my doctor.

Main conern, how much of it is muscle that you are losing? How much of it is bone density? and How much is fat? Is there another underlying condition that has made your weight so low?

Excellent questions for the doc and dietician.....

Don't despair...you are not unusual.

Hang in there

I had to say something....I was actually just cruising around the site and found this post!

Now I am a youngster here on the forum but being close to my 21st b-day I consider myself an adult......

To the original poster of this thread.....I concur that this is a place for "information", sympathizing, and levity in a life of discomfort. Sometimes though some of us are shocked at a person listing a product as totally gluten-free when we know that it specifically says it is not. This often results in a heated reaction fearing for the safety of the other members of the forum going off and trying a product and possibly making friends with their toilet for the next few days. Yes some people are vehement, but you cannot go in with your little brain gnomes and rewire their brain to be more open minded. Some people only know what they have experienced and are not aware that other people may be different than them, god forbid....

However, I think most of us here are open minded, in response to your post in Texan slang....."Them 'ders fightin' words" Not that you meant them that way, but people always can interpret stuff the way they want to.

Being an overly sensitive person to gluten I had a positive test to a gluten skin test, I am Celiac, and I have DH, I am extremely careful about what I eat. I am new to this whole gluten thing....well not new but returning to the gluten free diet with less restrictions. I appreciate people's experiences, where the information may not be 100% black and white accurate, I do get steered in the right direction on a place to look for gluten-free items in my life that I can use. Of course I check every label 3 times and bug the heck out of the natural foods store on site dietician, but I find that it is nice to know that I have a community.

Maybe it is not all "black and white" here, but then again is anything relating to gluten "black and white"? Just looking at the differences on this forum between the amount of allergies that people have, the level of intolerances that people have, and the different disorders/diseases people have not related to gluten, I would say there is no "right or wrong" answer. When I post information I try to think of most of the allergies/level of intolerance that people have. When posting a recipe, or new product I found I always mention that you should check it out for yourself and not think that I or anyone else has all the answers or all the information. That would be like going into a store and drinking oven cleaner because someone told you it was gluten free.

Richard, I am new to this forum, but you have made me chuckle already in the last week! I have never had so much levity about my disease before in my life! I get alot of support from this community when others out there who do not have any food sensetivities are clueless. Sometimes knowing that you guys are here, opinions and all is really the reason that I get up in the morning. To know that I am not alone and to get my stiff, pained, inflamed joint booty out of bed in the morning!

Happy Poo-Poo to You,

Happy Poo-Poo to You,

Happy Poo-Poo, Happy Poo-Poo,

Happy Poo-Poo to YOU!

We sing this to my 2yo when she's successful too! Sometimes we even light a match in her honor!

We're not normal, REGULAR is all we can hope for!

See what I mean about being the highlight of my day when I feel like heck! Sense of humor....necessary to survival I have found.

Here is my wonder creation.....I didn't measure anything however.

cook enough pasta for you to consume at the time. drain and set aside.

milk

1-2 tblsp butter or your estimate

handful of flour (I used bean flour for extra protein and fiber)

3/4 cup cheese or how much you like (I used jack style goat cheese-gives me less stomach upset)

Put these ingredients in the pan you boiled the pasta in and heat until the cheese and butter melt and the sauce thickens. Remove from heat and add pasta.

Alterations for more vitamins:

-when you boil the pasta add frozen veggies to the pasta and boil along with it. When the pasta is done the veggies will be tender (added bonus the pasta soaks up the minerals that the veggies leach out in the cooking process! actually a true fact!) My favorite is broccoli (it has lots of calcium, antioxidants, and minerals-plus it is tasty too!)

-you can also add your favorite spices-I add basil or oregano depending on my tastes that day, experiment with your favorite spices.

-also you can add your favorite meat or tofu, chicken works well with this as it is like alfredo and is a white sauce.

-change up your cheese selection, parmesan, cheddar and jack are all appropriate choices.

-----if you are not able to consume dairy or casein try experimenting with this base model of a recipe and post your discoveries!

I top this off with a nice cold glass of pomegranate juice-this dish has enough calcium, protein, and vitamins in it to hold you over. I try to overdo vitamins right now as I have lost 26 pounds in two months and am still losing! so I try to get my body to absorb something at least!

I just created this tonight and it was delightful and satisfies my pasta dairy cravings.

thought I would mention another of my favorite quick dishes.....

-brown rice and wild rice-boiled together in the same pot, with veggies added a few minutes after being on the burner

-add cooked meat or tofu before serving and voila! a fast main dish!

-top with your favorite gluten-free soy sauce and it boosts up the flavor.

this is dairy free too! and soy free if you don't use tofu.

have fun making variations!

Celiac disease is funny in being elusive. It sounds like celiac disease to me. I had grand-mal seizures this summer and they are sure it is related! I too get brainfog if I get glutened. It is actually considered one of the symptoms. Fatigue is a big symptom! Passing out, been there, done that. Anemia-totally, he is mal absorbing that much! Weakness, biggest symptom I have heard of. The sooner he gets diagnosed the sooner he can heal the damage.

Other symptoms to consider, significant weight loss, elevated white blood cell count, diarrhea and vomiting, anaphlaxis, pain everywhere, stiffness, pain in joints, headaches....the list goes on and on.

I hope this helps and I wish you luck in your quest for diagnosis and recovery. PM me if you have questions or want to talk about it, or get a college student's perspective on living with celiac, dh, or gluten allergy. I would be happy to coorespond with your son also if he wants to talk about symptoms and stuff.

check out gfsoap.com for gluten (and other foods, including casein, etc) free soap, liquid soap, shampoo, conditioner, lotion, etc. Because of my multiple issues, I've started using them. They test to be gluten free and none of the products they make has any gluten in them.

Hope that helps some!

Thanks, I am going to check it out.

Forgot to mention....I am also looking for a pain reliever. I cannot take tylenol because of interaction with some of my medications. Any recommendations on that? I have very stiff joints. I weighed in at the doctor at 139, I was 166 two months ago. He says that most of my muscle is gone and my bone density has decreased significantly. So I am stopping caffeine and taking up milk! I also have a previous back injury that caused alot of scar tissue and abnormal muscle re-attachment in my lower back. It has only gotten worse since I started to have celiac symptoms. This is where most of my pain is. Any suggestions will help.

ahhhhh the joys of pooping like you are supposed to....

I think I will take up that song too.....

And getting back on topic now.....

....Riding the bus home is torture because you have to stand up the whole way, and no one offers you a seat.

My problem here is that I am 20 and don't look like I am in searing pain. Some days I feel like a very stiff old woman who is 185 years old. Mind you I am not that old, nor am I commenting on anyone who has arthritis....my grandma has arthritis and osteoperosis, and I know how unpleasant it is. Getting onto the bus or going up any steps for that matter is a pain (literally). The people on the bus see that I am in pain and look at me with compassion but yet do not give up their seat. Even those who I know aren't in pain because I see them everyday. So I just glare and try to hold back my tears because the pain is so bad. I also try to hide my tendency to wince.

Ho hum....so is the human race

I have a severe sensitivity to wheat not only when I consume it (hence the Celiac diagnosis) but also when it is on my skin.

I get hives if I even touch the outside packaging of a product that is made with wheat. It happened to me once when I was helping a friend put food on the checkout counter at a supermarket. I had a severe reaction to touching the plastic bag on a loaf of wheat bread.

I also have anaphalaxis symptoms if I am in a kitchen or bakery that cooks with wheat flour. I had to move out of an apartment near campus because my roommate left flour out on the counter and my throat started closing up. I asked her if she understood the problem and she said she did but she just didn't care at all.

Therefore I have to be careful what comes in contact with my skin and what I eat.

'Nothin like getting your picture taken one day with makeup on and the next day waking up with your eyelids swollen shut, your face puffed up like a basketball, and your lips the size of a bad celebrity collagen injection (on the left side of my lower lip, it looked wierd believe me ).

My question here is what lotion do you guys recommend that has no gluten in it? My skin is severely dry, as I have been having hives everyday for the past 7months. I need something that really moisturizes the heck out of my skin, it is that bad. I also have DH and that has done a number on my skin too.

I am also looking for skin care products, hair care products (I have short, thick, dry hair), and makeup. I need makeup because I often do modelling for local artist venues/fiber arts organizations.....I am no model believe me.

If you guys have any recommendations that would be great!

not my first solid one, but it does make me happy to see it. I hate the results of getting glutened. Don't we all......

Suggestion that is very tasty!

This is not necessarily about mocha's but I like this alternative as it is quick.

When I put coffee grounds in a coffee maker I add cinnamon and nutmeg to the grounds and then brew as usual!

This is very tasty, and actually I add almond milk to it, even though I am not dairy intolerant.

Suggestion for frothing.....make sure the almond milk is room temperature, not right out of the fridge. If it is too cold, You use all the steam's power just to heat it up!

HOpe this helps!

sometimes you wish there was a pill like if you have lactose intolerance and can use the pill....maybe someday

....having solid poop is the highlight of your day.

....you have actually doodled a new cartoon dog on your notes named "Sprue"

.....you have a sign in your kitchen saying "Gluten free environment"

.....you have actually considered using a gluten-free bagel for a hockey puck

usually use paper plates and forks-

Hellman's mayo,

These are what I think is the culprit of your problems. Check your condiments for binders. Often times they are used to make the food not seperate out.

Paper plates and forks, wierd I know, but it is just like the glue on stamps. They use wheat fiber to bind the fibers of the paper together in paper plates. You could be poisoning yourself unintentionally. Check with the company on what they use to make their paper plates. Or just resort to washing dishes in the sink. Chore, I know, but think of it as your daily meditation or break from your hectic life.

Mayo, once again here is the problem of binders. Also, check the vinegar they use, white vinegar is made from wheat. The gluten is probably hidden somewhere and you are not seeing it. I switched to a mayo that is strictly gluten free. Don't be afraid to call companies or send them a letter! Squeaky wheel gets the oil!

Also thought of something else....Your apple juice, is it from concentrate? Sometimes those made from concentrate can be iffy. I only use straight squeezed juice not from concentrate and processed in a clean facility. This is realllllllly picky but it may help. I am also extremely sensitive like you it seems, I get full body hives from just touching the outside package of a loaf of wheat bread. I also get anaphalaxis symptoms when I walk into a regular bakery from all the flour in the air.

Maybe you just need to be extra careful like me!

Hope this helps!

The person who thinks I am faking it is coming to the club I teach at this week. Funny, he sent me an e-mail acting like he was still "buddy-buddy" with me. Everybody knows what he said, including my sweetie. Problem for this jerk is that he is a real small fry. If he still thinks I am faking it I think my comment will be "Wanna trade lives? Why don't you try a day in my shoes?"

Bonus: My boyfriend was defensive line for football in highschool and went to state with his weightlifiting team. Also can still bench 350.

I will relish in the look on his face when he tells my boyfriend that I am faking it.

Appropriate quote:

"One of these days Alice, Pow! Right in the kisser!"

Some people are rather ignorant. Sometimes it can be funny when they think they are right. And amusing when they are soooo wrong.

Say I noticed you are UofM mom. I happen to be a U of MN Twin Cities Student. Which campus is he at? Morris? Duluth? Or does U of M mean another "M" as in another state. Maybe I can be a resource for him. I would be happy to help. I am also trying to get a student group started.

First time on blog site!My son has just moved to attend college. He has been having fatique, brainfog(as he calls it), weakness, trouble concentrating and recently found out he is anemic. I'm having a hard time getting him to understand the importance of going to a GI doctor to have a definative test for Celiac(my aunt is a celiac and both my husband and I have heavy thyroid disease in our families, including ourselves!!!) He has been working with an ENT Dr. that is testing for food allergies and they have come back positive for wheat, dairy and soy. (He had big sinus problems all summer and ended up having a septoplasy in late July)I think he is in the denial stage right now although he is making a big effort to go gluten,dairy and soy free. He fainted at the bus stop last week on his way to class!!!! He has withdrawn from classes for the semester to try and get to the bottom of his illness. We have an appointment with a GI doctor next week but he still says things like "I just don't think that's necessary". He wants to just continue working with his ENT Dr. that found his "food allergies". Don't worry, I'm insuring that he go to the GI Dr. next week, I'm going with him but...this all does sound like celiac right??