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New To Everything (and I Could Just Cry)


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#1 gluten free guy

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Posted 05 January 2008 - 01:48 PM

I've struggled with allergies my whole life, when I was younger I was allergic to dairy, eggs etc. I'm 23 now and going to college, I do my best to eat healthy, I dont do drugs, I smoke cigarettes.

I've struggled most of my life with a rash on my feet, the tops of my feet. They itch to the point of bleeding nearly every night for as long as I can remember, I went to doctors and always got the same answer Excema.

Finally about 6 months ago, I had to opportunity to go to an allergist. I was diagnosed with: Peanut, Wheat, Dairy/Egg allergy, I've also found that SOY is something I can't deal with either. Life since then has been somewhat of... I dont know how to describe it. HELL.

The worst part about it is that once I started avoiding these foods, even the SMALLEST ammount of ingestion has started to give me Super Sized symptoms.

Gluten seems to be in EVERYTHING. I've finally found a way to get protein, using ground hempseed and also flax seed.

My question is, why have the symptoms seemed to get so exponentially worse since the diagnoses? Is it my brian (slightly OCD), I freak out about everything. I'll eat something and if I get the slightest itch 15min later I'll freak out and think I ate wheat or something else from my DO NOT EAT list.

I have been avoiding wheat and all the other stuff, yet I woke up this morning SWOLLEN all over my face, hands, my fingers are so swollen it's hard to type. I bend them and they crack. I'm wondering if maybe gluten affects you as it passes through your intestine? Giving you rashes and brain fog only in certain parts of your intestine as it moves through.

How do I get healthy, where do I really get started. I will do ANYTHING to get rid of these symptoms, I'm tired of itching and scratching, constipation, brittle teeth etc etc. What kind of doctor do I need to see? I want to try the elimination diet. I work two jobs and I have a hard time if I miss out on my protein. I dont know, I feel like hmmm, ending this sad life.

I am so frustrated, I could scream.

Anyone have any advice or possibly a little encouragement?
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#2 Lisa

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Posted 05 January 2008 - 02:07 PM

Hi and welcome. Glad that you found us.

FIRST, take a DEEP breath, relax and think about this as an exciting new beginning. :) Food allergies and gluten can reek havoc on your body and brain. We have all been there.

Don't make meals difficult. Start simple: meats, seafood, rice. potatoes, fresh veggies and fruit. Here is a listing of companies who will list all of the eight allergens on their ingredients:

http://www.glutenfre...donothidegluten

I would like to suggest that you have your itchy sores biopsied when they flair up. It could very well be DH (dermatitis herpetiformis) and can be easily tested.. DH is a confirmation of diagnosis of Celiac Disease.

This site is a wonderful source with many people who have been where you are now. Take a walk around.


Edit:

You might be interested in this: http://www.celiac.co...n-MD/Page1.html
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 kevsmom

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Posted 05 January 2008 - 03:12 PM

Welcome! Hopefully we can be of help and support to you :rolleyes: .

Don't forget to watch out for cross contamination. You may want to invest in some new things for your kitchen. Cutting boards, wooden utensils, colandars, scratched plastic containers, and scratched pans that you used in your pre-gluten days all tend to have gluten hiding in them.

I agree with Momma Goose. There is a lot of wonderful information on this site. Feel free to ask any questions that you may have. Someone is sure to have the answer - if not, they will find out for you.

Cindy
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Diagnosed with Celiac Disease April 2005
Diabetic

#4 mftnchn

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Posted 05 January 2008 - 07:58 PM

It sounds like you weren't screened for celiac, just tested for allergies, right? I have noticed on this forum that many people report getting more sensitive after starting to avoid gluten and other things they are sensitive to.

I read also one person who said it eventually seemed to settle down several years down the road. Others seems to stay pretty sensitive.

I think testing the skin eruptions for DH is a great idea.

Also if things don't get better, there are some people on the forum who have found that there are other things going on that cause the sensitivity, like an underlying infection, metal toxicity or sensitivity to a group of things with a certain characteristic. (On the very lengthy "OMG...." thread for example, or the group on the low oxylate diet, or the lyme disease thread, etc.)

This is a great place for both support and suggestions. Welcome.
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4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#5 Darn210

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Posted 05 January 2008 - 08:51 PM

Gluten seems to be in EVERYTHING.



Yes, it does!!! Don't forget to check your nonfood items . . . medications, toiletries, pet food, etc.
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Experience is what you get when you didn't get what you wanted.


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#6 cwj-tlj

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Posted 06 January 2008 - 10:16 PM

Ok , here's the deal as I understand it...I got much better for the first month, then I got much worse even on the diet. A sort of hypersensitivity sets in whereas any minute amopunt of gluten will cause a severe reaction. My guess is you are still getting glutened. Do like everyone suggests and check everything. Things I ate the first month that didn't cause a problem the first month actually had gluten in them and I didn't realize it for awhile until i double checked because I had eaten it without any problem , I thought. This hypersensitive period will subside anywhere from 6-18 mos. Now when I accidentally get gluten or casein I still get sick but for 2-3 days , not a week of the worst hell I have ever experienced
This disease almost killed me.....BTW noone is smart enough to get it right for awhile!
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#7 CuriousOne

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Posted 07 January 2008 - 03:05 AM

i know what u mean about ending your life. but it can get better...that always seems to be the case for me....
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I eat whatever I want. But I listen to my body. I just can't eat a lot of diary or grains. If I do eat them, I savor and chew them slowly and well... I don't like feeling sluggish and if I eat alot of those things I start feeling sluggish. I feel very cleaned out now. I like to eat lots of raw fruits and veggies. I think for me I just can't eat things that are inflammatory, and dairy and all grains are inflammatory to me. So looks like I'll be eating mainly fruits, veggies, wild or grass-fed meats, and figure out what other stuff I can eat thats not too inflammatory. I'll probably also drink wine or brandy and use other plants things that are anti-inflammatory. Yeah!

#8 Sock

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Posted 28 January 2008 - 12:53 PM

QFE: Don't make meals difficult. Start simple: meats, seafood, rice. potatoes, fresh veggies and fruit.

Since you're in college I'd suggest getting a rice cooker (if you are eating rice, that is). A cup of rice, a cup of water; toss in a piece of pre-cooked meat (to thaw) and you've got a meal with only 20 seconds spent on preparation.

You also might want to buddy up to the school's health center; they may not be able to help but they can probably get you pointed in the right direction.
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"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." ~Dr. Seuss

#9 Worriedwife

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Posted 29 January 2008 - 12:27 PM

Be sure that you're not sharing utensils, toaster, cookware with anyone else who is eating gluten. You need to have your own stuff, particularly the toaster. You can never get an old one clean enough for it to be safe for you to use. Gluten clings to everything, so you will need to replace any wooden or plastic utensils, strainers, cooking spoons.

As everyone else has said, try to keep your diet simple. There is an awful lot of food out there that is gluten free. Your other intolerances might make it a bit more of a challenge, but meat, rice/potatoes and fresh veggies will take you a long way.

Good luck, and keep coming back to the board. The people here have a lot of information for you.
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#10 beaglehollerranch

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Posted 29 January 2008 - 02:03 PM

I've struggled with allergies my whole life, when I was younger I was allergic to dairy, eggs etc. I'm 23 now and going to college, I do my best to eat healthy, I dont do drugs, I smoke cigarettes.

I've struggled most of my life with a rash on my feet, the tops of my feet. They itch to the point of bleeding nearly every night for as long as I can remember, I went to doctors and always got the same answer Excema.

Finally about 6 months ago, I had to opportunity to go to an allergist. I was diagnosed with: Peanut, Wheat, Dairy/Egg allergy, I've also found that SOY is something I can't deal with either. Life since then has been somewhat of... I dont know how to describe it. HELL.

The worst part about it is that once I started avoiding these foods, even the SMALLEST ammount of ingestion has started to give me Super Sized symptoms.

Gluten seems to be in EVERYTHING. I've finally found a way to get protein, using ground hempseed and also flax seed.

My question is, why have the symptoms seemed to get so exponentially worse since the diagnoses? Is it my brian (slightly OCD), I freak out about everything. I'll eat something and if I get the slightest itch 15min later I'll freak out and think I ate wheat or something else from my DO NOT EAT list.

I have been avoiding wheat and all the other stuff, yet I woke up this morning SWOLLEN all over my face, hands, my fingers are so swollen it's hard to type. I bend them and they crack. I'm wondering if maybe gluten affects you as it passes through your intestine? Giving you rashes and brain fog only in certain parts of your intestine as it moves through.

How do I get healthy, where do I really get started. I will do ANYTHING to get rid of these symptoms, I'm tired of itching and scratching, constipation, brittle teeth etc etc. What kind of doctor do I need to see? I want to try the elimination diet. I work two jobs and I have a hard time if I miss out on my protein. I dont know, I feel like hmmm, ending this sad life.

I am so frustrated, I could scream.

Anyone have any advice or possibly a little encouragement?


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#11 beaglehollerranch

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Posted 29 January 2008 - 02:30 PM

1o years ago I didn't have any health problems. Allergies were not not to much of a problem. Then I started to get sick to my stomach when we moved to our new house out in the country, in what use to be a cow pasture.. We had bad well water. It took the DEP to put a 1 Micron filter on our incoming water and let it run for 12 hours to find what the problem was. It was loaded with all kinds of parisites and bacteria. We took some of our sick animails to the Dept. of Agriculture for testing. I took the reports to my doctor and he gave me and the rest of my family members 30 days worth of anti-parisitic tablets ( started with a M) and flagel. My symptoms went away. Hand swelling, red face, bloated stomach, diarheia, allergys, dry itchy skin. My cognitive thinking improved greatly, I suddenly had lots of energy, my libido returned, I could move my hands and fingers again and quickly. I felt 20 years younger. We treated our animails with penicillin G and cipro and a wormer called safe-gard for 10 days. They weren't sick any more either. So get your water tested and it its negative put a filter on it and test it that way. Call your EPA office for details. If you go camping don't drink any water that comes from a stream or spring. Hope this helps you.
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#12 gfp

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Posted 30 January 2008 - 04:12 AM

Some good advice so far, indeed I guess this is just a summary...
Since you smoke .. i'll use that analogy. (and its just an easy analogy) Don't know how much you smoke but lets say 20 a day.
As we all know nicotine, tar etc. is bad ... but our bodies adapt to getting rid of it. However, imagine a non smoker trying to smoke 20 a day... they would be sick as a dog...You would probably be healthier if you didn't smoke BUT it doesn't affect you like it would the non smoker, but the long term effects etc. are what are serious. (I'm not telling you not to smoke here, its really just an analogy)

This is how I see the gluten thing ... when you eat it all the time it makes you sick... but it makes you sick in the long term way...
Its addictive (like nicotine) as well so you also get withdrawal effects.

However your body gets on with processing the toxins and indeed gets tuned to dealing with them. When you go gluten-free your body will adjust back to not coping with these toxins.. and then when it gets some it suddenly jumps into over drive...

Just to thrash out the analogy ... If you ever quit smoking then you'll realise that the first cigarette after a year tastes foul...and makes you feel ill BUT you adjust back to being an addict much quicker than someone who never smoked. Again this seems similar with gluten... once your body has been in a state of dealing with it constantly it seems to revert back to the same reactions much more readily and even more violently than before...

Practical advice?

So taking the hightened sensitivity into account basically as people have said.. cross contamination and traces of gluten (if its gluten not wheat) are going to hit you much harder... which means a bigger effort to keep away...
The only 100% sure way is cook everything at home, from scratch in a kitchen with non of the allergens...
Obviously very few people have this luxury... so it's then damage control ...
Eating out is always dodgy... and for you

...Peanut, Wheat, Dairy/Egg allergy, I've also found that SOY...

that covers quite a lot... unfortunately my experience is that anything gluten-free is usually classed as "healthfood" and "healthfood" seems to use a lot of Soy ... (quite why is another subject in itself, suffice it to say I don't think its good for anyone in a processed form) ... so that limits you even further ...

So basically you need to be wary of people using the same dish cloth, etc. and as you have noticed the tiniest amount is enough... just an example .. our serviced office shares a kitchen... I know 100% what I have eaten for the last week because I prepared it 100% myself YET I'm glutened .... the most likely explanation is that the cleaners put everything in the same dishwasher and several people bring in cereals, bread etc. so the cups and teaspoons are contaminated ... OR they are using the same spoon in the coffee etc.
Basically it can't be anything else ...

Now the kicker is that nearly all MD's will tell you this is safe.... The UK actually allows 20ppm or 200ppm (depending on product) and it can still be called gluten-free. Unfortunately, regardless of the misleading studies (undertaken and paid for by the food industry) I am certain that I react and so are quite a few people here on this board..

So basically ... the best advice I can give is be as paranoid as you can... minimise your risks and be prepared to foul-up every so often... and learn from your mistakes.

Also beaglehollerranch has a good point, its certainly worth checking and additionally since you already have a few allergies its probably more than possible you are also allergic to some non food items... these could be anything from cleaners or air fresheners etc. Personally I'm allergic to lavendar (which is a bit of a joke since its meant to be a natural hypoallergenic but hey) ... I'm even allergic to synthetic lavendar ... which is put in air fresheners etc. so it must be some weird component..
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#13 April in KC

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Posted 31 January 2008 - 12:56 PM

Please hang in there. My oldest son is gluten, dairy, soy and peanut free. My middle son is gluten, dairy and chocolate free. My youngest son has multiple food intolerances and it's easier to list the things he DOES eat. For five months, I was grain free (no gluten, corn, rice), dairy free and peanut free - now I'm just gluten free and lite on the other things. I totally know what you mean about symptoms getting worse once you have eliminated the foods. That happened to me. If it's any consolation, about a year later, my sensitivities seem to be backing off somewhat. One of my kid's GIs said that people with gluten problems often develop sensitivities to other foods that can go away over time. However, if the sensitivities develop into a full IgE allergy (hives, anaphylaxis), they may be harder to eliminate.

One possible explanation (partly speculative but based on some things I've read) is - you have a leaky gut that allowed whole food proteins to get outside the gut and provoke a response from your immune system. Your immune system mistook these whole, undigested food proteins for something like a virus, so it sent out soldiers (antibodies) to fight. But, unlike a virus, your immune system was never able to win the war against the invaders, because they kept coming back every time you ate. It kept building it's armies (antibodies) bigger and bigger in hopes of one day winning that war. Now, all of a sudden, you figured it out - and you stopped eating the foods. But inside you still have this giant army built up, ready to fight. Accidentally eat a little of the offending protein and WHAM the whole army shows up to fight. You've got a big army, you get big symptoms.

Give it a year. Your army will gradually decrease in size as your body figures out that you don't need to fight every day.

I'm not promising this will happen, but some people here have said that they started out with stronger reactions that eventually calmed down. For me, the first 3 months were the worst when it came to unpredictable and severe reactions. A year later, I am still reacting to traces, but the big reactions are not happening as often. I get headaches and fatigue, but I rarely fall asleep uncontrollably, which used to happen following a headache. When they happen, my skin reactions are less severe. It could be that I am just getting smarter about what to avoid.

You need to concentrate on finding your "base" foods - things you trust. Do not hold your life to the same standard as everyone else right now. You are dealing with a major day-to-day battle that is hidden from almost everyone else. You have to see yourself as a fighter in this hidden battle. Celebrate the victories - a new safe food discovered or a week with no reactions - come online to do it if you can't find anyone who understands.

Sometimes it's going to feel like you're an explorer who crashed on an alien planet where the natives all eat toxic food and you can't. You have to think every day about what to pack with you to make it safely through the day. But the planet is still beautiful and worth exploring and enjoying...and in time, you will find things you can safely eat.

I predict in a year you will look back and say, man, that was tough, but I'm doing so much better now. I know where to find breakfast, lunch & dinner.

Set a goal to find 20 safe foods to eat at home. Then find 10 snacks you can pack along with you. Then start researching menus at your local restaurants - don't overlook the ones you used to skip past - and try to find 3 things you can eat out at a restaurant. Gradually expand your list. Eventually you will stop looking at the stuff you can't have and start only thinking of the things you can have.

Our family has many, many restrictions. I have to call manufacturers because DS1 has a Class 6 peanut allergy (over 100KU/dl), and we just don't eat stuff that was manufactured in a place that uses peanuts. But bit by bit, we're finding the foods - enough for breakfast, lunch, dinner and dessert.

PM me if you want to talk about specific food ideas.

April
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#14 aprilh

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Posted 31 January 2008 - 02:40 PM

You might try replenishing your gut flora with a healthy human strain probiotic like Natren Brand.

I had a BAD sensitivity to gluten because of a systemic candida yeast condition. This can cause leaky gut and all sorts of wierd reactions, itchiness, eczema, ect. I got to where I was reacting to everything.

I started only eating what I knew I could eat safely, I took antifungals, probiotics, L-glutamine to heal leaky gut and now I am no longer as sensitive to all of these foods although I mostly avoid wheat and dairy.

I guess my point is that sometimes there are other underlying issues that may be triggering all these reactions.

Let me know if you want some links or more information on this subject and i will post.
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#15 rock on!

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Posted 31 January 2008 - 04:42 PM

Hi GFGuy. First off, hang in there. This whole thing will get easier with time. Search around on this site for information....there's a lot of really good advice. Seems like people have given you advice about food already. Just stay basic for now, stick with simple easy foods. my husband has been eating plain burger patties & baked potatoes & although it's not the best gourmet meal, it is helping him to heal.
One thing I think you should do for yourself to feel better is to start taking vitamin D (D3 only, don't take D2...it doesn't work as effectively) this will help with many things, including lifting your mood. You should also look into taking a sublingual vitamin B12 as well as fish oil for omega 3s...people who have a problem with gluten often have issues with malabsorption & don't receive these essential vitamins. The omega 3 will help with inflammation. We take Carlson brand fish oil liquid....sounds gross, but it seriously does not taste fishy...you can put a teaspoon in some oj & you'd never know you were taking fish oil. & of course, check the labels of the supplements you take to make sure that the things you're sensitive to are not in them.

Keep your chin up.
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never dx Celiac
dx IBS whole life
gluten free 9/12/07

husband:
blood test results negative
dx psoriatic arthritis 2005
psoriasis since childhood
gluten free 9/14/07


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