Drowning In Need Of Help

[changed]

hello to anyone who reads this my names kylee I'm 18 years old and I was diagnosed a few months ago. I have a gluten allergy but sadly that isn't all I'm also allergic to eggs and for some odd reason asparagus. So far I have been unable to connect with anyone who knows what I'm going through I feel completly alone and I don't know if the symptoms ever go away fully. I have been sick for 9 months through half my senior year of high school. I was am unable to start college because I am still so ill.... does this get better? Or am I always going to be afraid of everything I touch every product I use every person I'm near. All the food I eat even if I've prepared it because cross contamination can happen and I can get worse. I've had to go through so many doctor appontments so many supplements so many things and I still go through it alone. Does anyone out there know what I'm going through.......

[Di2011]

Hello Kylee!

1. Diagnosis:

Can you tell us more about the diagnosis? So allergy intolerance ? Celiac? What did the doc (and what sort) actually say to you when you heard the results? and how you were diagnosed (blood, biopsy, skin tests etc). I'm no expert but it helps our more technically savvy members help you out! Any info about this can be very helpful.

First: get a copy of your test results. They can be useful in future and useful to dictate on this forum so that our member who are techy types can analyze.

2. Symptoms:

What are your symptoms (apart from those you have shared, and most of us share with you, that is the fear of the allergy culprit - what I call poison). Don't be shy on here because most members have had to share some shockers to get a real idea from others about what is going on. C for constipation and D for diarrhea were a bit of a head spin for me in my early days

3. Sanity:

This is the hardest part in the early days/weeks/months. I spent about four months itching like crazy all day and night (seriously sleep deprived) before I realised I had to get very very strict and serious about diet. I didn't have anyone to talk to or who wanted to know but my crazy insane posts will be in internet / server land forever Say what you want to say and tell us what you want to get out of your head. And we want to help.

You guys who are in your young adult life may just be in the worst situation of anyone on this forum. Emotionally and functionally. Not kids growing up with parents to cook, care, train and keep a watchful eye. Not us oldies who lived somewhat miserably but have some age/experience to get through what needs to be done.

Us oldies are pretty good at giving both technical (medical/diet etc) and some emotional/social support so give us a chance!

[changed]

My diagnosis is that I have a food sensitivity my doctor diagnose me with ciliac disease without doing an endoscopy. My doctor took some blood and a few weeks lateri came back in to get my results. He said that I'm allergic gluten eggs and asparagus and he handed me a print out of what all I'm allergic to but there are other foods that I'm sensitive to but I can still hav just not everyday. He said it more profesionally but I don't remember word for word. Why is it that my favorite foods hav to be the things I'm allergic to. :/ my symptoms are that I get really nausous and dizzy my whole body shakes and twitches I'm tired all the time I gag at even the thought of food if I drink to much or to little or eat to much or not enough I get sick the the point that I'm fighting puking what little food I have eaten my symptoms have greatly decreased in the last few months but I'm still struggling with them. Do the symptoms ever fully go away?

[AVR1962]

My diagnosis is that I have a food sensitivity my doctor diagnose me with ciliac disease without doing an endoscopy. My doctor took some blood and a few weeks lateri came back in to get my results. He said that I'm allergic gluten eggs and asparagus and he handed me a print out of what all I'm allergic to but there are other foods that I'm sensitive to but I can still hav just not everyday. He said it more profesionally but I don't remember word for word. Why is it that my favorite foods hav to be the things I'm allergic to. :/ my symptoms are that I get really nausous and dizzy my whole body shakes and twitches I'm tired all the time I gag at even the thought of food if I drink to much or to little or eat to much or not enough I get sick the the point that I'm fighting puking what little food I have eaten my symptoms have greatly decreased in the last few months but I'm still struggling with them. Do the symptoms ever fully go away?

I wonder if you may be lacking some nutrients. Twitches and spasms could benefit from more magnesium and potassium. System sounds very sensative yet and more healing needs to take place. There's several reasons why a person become dizzy but if it is gluten ataxia you have to strictly stay away from glutens to get it to go away. Other food sensativties can cause short term dizziness and that's where a journal comes in handy. Protect the stomach before you eat with Pepto or an antacid, stay away from acidic foods. If you are eating dairy you might stop that for awhile, it can make you very nauseas if it doesn't agree with you. Also, several things could be causing you to be tired....lack of vit D, B12, or/and iron. Make sure you're getting enough of these nutrients, it will help.

[changed]

I'm. Getting. Myers cocktails which is a nutrient injection I get one every 2 weeks and I'm on 25 different vitamins and nutirent pills I've been on these for months. My body just isn't absorbing it very fast

[Di2011]

So you have celiac and additional allergies. Always a tough one.

Do you / have you cheated (anyone who hasn't is a saint)?

Are you noticing when you accidentally glutened?

Can you describe your day to day diet? Snack and drinks included.

Do you cook and/or shop for groceries or someone else? How are your cooking skills?

Have you checked for and gotten rid of bathroom/cleaning/laundry products that contain gluten? Don't forget to check dishwashing liquid. Switch to a safe liquid if you have powdered laundry detergent.

[AVR1962]

I'm. Getting. Myers cocktails which is a nutrient injection I get one every 2 weeks and I'm on 25 different vitamins and nutirent pills I've been on these for months. My body just isn't absorbing it very fast

Good! This will help ALOT but it does take time. Do protect your stomach and allow for the mending process. Meantimes take evry step to safeguard yourself from gluten.

[changed]

Ya I've noticed I've had atleast 7 myers cocktails and no I havnt cheated I'm not going to make myself sick for a few moments of good food. I did hav a mishap like 2 months ago where I accidently switched brands of beef jerky to one that had gluten in it I didn't notice I did that because the lables look vurtually the same. Ya I've had to change my hair products tooth paste mouthwash and makeup because of my allergy. What really sucks is that my other allergy eggs comes up in just about as many foods as gluten does and unfortunatly not everything that is gluten free is also egg free so I have to be extra careful. I havnt checked my laundry detergent or dish soap so ill check those today. I've done my own grocery shopping for years I just have to do a lot more of it now and a hell of a lot more reading lables. Cooking wise I'm really good I've taught myself to cook because my dad always just makes whatevers fast and easy so its something I've had a million times and I like variety. So I cook very well. I don't really notice if I've been glutend because I'm still just trying to get better so I still feel nausous all the time. My diet is just meats vegtables fruits juices sometimes gluten free pastas just normal stuff.

[Takala]

You should go over and check out Shauna Ahern's blog Gluten Free Girl and the Chef, because she has had to go egg free this year, so her newer egg free recipes will be adapted to that.

The celiac auto immune reaction is a little different from the classical allergy reaction, so it will take longer for your body to stop reacting, because it affects your entire metabolism, but you will get better over time if you stick with it.

[heidi g.]

sounds like me im always fighting the urge to puke. I been close to puking a couple times. sometimes i wish i could so i would feel a little better. But unfortunately im not much of a puker. I just have to sit there and suffer and wait it out

[Di2011]

I made a lot of simple soups (pumpkin, potato and leek) in the first weeks. Then started adding rice and then went for simple stews/casseroles/quick risotto (in the rice cooker). Easy on the digestion and a big pot meant plenty of easy meals. It meant I wasn't cooking/washing up so much which was a big big plus at the time.

It also makes for easy testing of additional ingredient. If you are eating from the same original pot you can add a gluten-free pasta and see how you go, for example.

[changed]

Eating isn't a problem so much anymore I made sweet potato soup a bunch of times. My doctor say to stay away from raw foods because cooking foods aids in the digestion processt I still gag at some foods still but not as much. Are headachs part of the allergy thing? Cuz I've had off and on head achs for like a week an a half

[Reba32]

stay away from manufactured and packaged foods, those will be the most common things where you're going to find eggs and gluten. Stick with natural foods, in the outside aisles of the grocery store. Fruits, veggies, unprocessed meats.

[changed]

I have been doing that it helps a lot just takes longer to cook and make meals. But its worth the effort

[Di2011]

I have been doing that it helps a lot just takes longer to cook and make meals. But its worth the effort

This is great ! And I agree it is worth the effort. There are only two brands of gluten-free products I can tolerate (one Australian, one German) and only the basic cereals. The only other processed item I eat is rice noodles. I keep testing every now and again to see what my tolerance is like but I think it will be a while yet.

I do get pretty sick of eating rice sometimes

I just remembered an incident that you might find interesting:

A couple of years ago I ask in a health food shop what might help my hayfever. The owner(a naturopath) asked me what food I craved... I had to think about but the only thing I have ever really craved is egg. So she tells me that a lot of hay fever symptoms are a result of food intolerance.

I haven't been tested for egg allergy but it wouldn't suprise me if I was too. I've been avoiding them for months.

What is your favourite meal? Mine is the rare ones when I don't have to washup

Are you hoping to get back to school ? What would you like to study at college?

[changed]

I like dinner its my favorite meal I don't really have a favorite food aslong as the meal is good and full of flavor its good enough for me. Ya I want to get back to school my naturopath says maybe 2 more months and I should be back to normal but there is still no way to be sure about that. Rightnow I'm redecorating a few rooms in my house to pass the time and I like to work on things like that. I'm an artist. So different areas of studie but I love to draw not really much of a painter but I can still paint pretty well. I'm also going to be taking photography classes. I bought a camera because I liked the photo class I took in high school so much. Havnt completely learned how to use my camera yet but I'm still working on that.

[Di2011]

Oh I am so envious. I am one of those wantabee artists with absolutely no talent. This is my version of drawing a tree:

x x x x

x x

x x

x x

x x

x x

| |

| |

| |

_________

What sort of colours / styles are you doing in the rooms?

I bet like so many others on this forum you get sick of people thinking you must be okay or look okay so everything must be okay!! If you can cook/clean/paint etc they assume all is okay. Some people need a good dose of DH and/or D to get them to be considerate or drop the judgments ((I would never ever ever actually wish either of these on someone!! Both together is living nightmare!!))

[Di2011]

woops. this tree is even worse the one I tried. It took out all the formating. Lets call it bamboo.

[changed]

DH OR D? Not a clue what that is. Ya right now I'm preparing for thanksgiving I'm making stuffing, gravy, cranberry sause, roasted root veggies, pumpkin pie and brownies. The colors for the room its my drawing room was my sister bed room but the walls are an off shade of white that looks grey and I just finished the first lily in bloom the entire flower is like 5 1/2ft by 5 1/2 tall and wide its blood red I had to use a sponge the side of 2 of my fingers to shade it correctly. Needless to say it took a while. Then I am painting black vines streaching out from the flower that cover the walls and adds another element to the room. Idk for sure what I'm doing with the bathroom or my bedroom yet still working on that. And ya doing all this stuff while still being sick really isn't easy I feel really sick most of the time but I try to work through it

[ciamarie]

Personally, I would look at your supplements also. You said you'd been taking them for months (25 of them? yikes...), was this before or after starting gluten-free? I have the added issue of DH (dermatitis herpa( ta-something)), so I discovered through these forums to reduce iodine also. I had already discovered that some supplements I'd been taking made me feel nauseous, before starting a gluten-free diet about a month ago. (For example: twinlab zinc). Keeping a food & supplement journal might be helpful for that.

If possible, you might want to rotate them, like take just 1 or 2 one day and see how you feel, make notes, and try another one the next day.

[catsmeow]

Hi changed, I do not have Celiac's disease. I have a severe wheat allergy and have a sensitivity to rye and barley.

You asked aboout headaches. Before being diagnosed, I was in bed with migraines at least 5 days a week from gluten. It was terrible. Now, I only get headaches when exposed to airborne wheat. Are you getting your headaches when you are around wheat or egg products? Especially, when they are cooking or baking? Are you getting an itchy tingly mouth? Dizzyness? Tight throat? Chest tightness and coughing? nausea? Hives? Extreme Fatigue? Those are the things that happen to me from airborne wheat exposure. I also get joint pain and muscle pain the next day. I had a bad reaction yesterday that put me in bed. I got airborne wheat exposure overload at the grocery store, they were baking a lot Thanksgiving stuff, I still have a few hives and I am tired with muscle pain especially in my shoulders neck and back. I read somewhere that this is normal body location spots for pain with food allery reactions.

I wonder if some of your current issues could be airborne reactions to your food allergies.

(((((hugs))))) I'm so sorry you are going through this dear. It sure sounds like you are doing everything right. I hope your poor body heals up soon. I am sure your body has a lot of healing to do from both allergies and Celiacs.

[changed]

Thanks and I can be effected by airborne wheat? Really well I don't cook anything wheat or eggs and my fam doesn't bake so at home that isn't a problem but I walk by places that are baking so that could be it. And ya 25 supplements a day maybe more but I started after I was diagnossed there all prescribed by my doctor sometimes I just quit taking them because its to much . But ill try rotating them. Are any of you cooking like crazy for thanksgiving?

[Di2011]

Sorry.. there is a language on this forum that we should call "glutenedish" or something.

D= diarrhea or depression

DH= dermatitis herpetiformis ((DH is the skin form of celiac))

You should post some photos of your walls! They sound divine.

Have you checked that any medications and household (cleaning,dishwashing,clothes, bathroom) are not gluten containing? Wheat comes in many disguises. If you aren't sure post the ingredients/contents and we can let you know.

Airborne can be a problem for me. I don't like the bread aisle.

[catsmeow]

Airborne wheat didn't bother me until I was gluten free for around a year, but everyone is different, and I thought I would mention it, in case it was an issue for you.

[changed]

I don't like the flour isle. how do I post pics? I've check all of the stuff that I use its all safe... I think