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ncdave

My Story, Please Read (Long Post)

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Hello everyone,

I'm a 53 yo male thats extrmely sick. No insurance an out of work for 2 years now. I have been told i have copd/ emphysema, acid reflux, Hiatal hernia, IBS. I've had multipule CT scans and blood work, colonscopy, endoscopy, abdmomal ultrasound, gallblader function test, ect ect. My symptoms sound very similer to what i"ve read on here. headache, dizzyness, vertigo, heart pounding, shortness of breath, fatigue in arms and legs so bad i can hardly walk, nausae, bloating, severe abdomal pain, numbness in small toes on right foot, knee pain, pale fingers when extrmely sick, hot and cold spells, anxity attacks,depression,flu like feeling that gets so bad i have to lay down.

July a year ago i got diverticilus, after the clear and then soft food diet, when i tried to return to eating i developed problems with getting sicker. I went through a couple weeks that i craved bread really bad, so thats what i ate. I got really sick. I started eating nothing but baked potato, garden peas, water, but lost weight fast. I added ice cream with pure honey and peanut butter. also graham crackers with pure honey an slowley gained the weight back.(3 months) Meats did not agree with me at all, but i did eat pork neck bones cooked in a pressure cooker (really tender) once a week. I know i cant eat bread because one bite makes me extrmely sick (flu like symptoms) I"ve had D within 5 mins of eating as long as i can rembember. Now i have c and take miralax daily as prescribed. I take no other meds, i took otc ppi"s prevcid,zantac etc,etc, for over 5 years. Now they make me sick. so does every pill the docs prescribe.

I tried the gluten free diet for the last 2 months but didn"t know enough about it. After a lot of reading i finally got well for 10 days. I was eating baked fish, roterser chicken, baked potatoes, sweet potatoes, garden peas, even fudge from a fudge shop !!!!! My mom gave me some sweet potato caserol an homemade fudge, now i"m sick again. She said it was gluten free??? My questions are

#1 is when you get gluttened do you get flu like symptoms? along with all the other symptoms coming back?

#2 is there a dependable test i could have done for other food allergies?

#3 How long does it take to get over being glutened?

I"ve gone back to baked potatoes and water to get well so i can try again.

i appologize for the long post, but thanks for reading, and please respond, i feel like i"m in this all alone sometimes. david

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You're not alone. Gluten can make us super-sick and I'm glad you've figured it out.

#1 Yes, you can get flu-like symptoms from eating gluten along with everything else. We have some folks on the board that feel that way.

#2 The best thing to do is focus on healing rather than testing. You can get blood testing for food allergies and follow up with an elimination diet, but chances are you're reacting to a bunch of stuff. With the gluten damage, your gut is leaky and bits of protein you can react to get into your bloodstream where they shouldn't be and cause all sorts of havoc. I've been learning a diet called GAPS that is designed to heal the gut and it has me feeling a lot better. It focuses on bone broth and cooked vegetables at first, and eliminates problem foods like dairy, soy, and grains for a time. http://www.gapsdiet.com

#3 Again everyone is different. Some people only feel poorly for a day or two but others feel "off" for as long as two weeks. For me it's usually 3-4 days.

Hope this helps and welcome to the board.

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The unspoken rule is, that even your most well meaning relatives are likely to have to go thru an intense learning curve before they figure out how to not gluten you, and even then they sometimes screw it up anyway. :blink:

Cooking on old teflon or using old tupperware, or the same wooden cutting board for bread or the same toaster, for example. (you have no way of knowing what the fudge shop does, even if the ingredients "sounded" gluten free, unless the cook told you they make it that way. you were lucky. however, I can almost guarantee Mother used a pan that had been used for regular baking of wheat, and that got you. ) Or they don't read labels. Our house is gluten free and my spouse cooks, but even he has gotten me sometimes because he just grabbed what he thought was the usual brand, and the contents had changed and he didn't catch it. We went thru about 3 kinds of ketchup recently (2 of them were marked gluten free, but I was reacting to them anyway) until I said, *&^$$^*()#@ just buy the freaking HEINZ NEXT TIME AND NOT THIS ORGANIC **** that is full of **** because this company is a ***** cheap careless ****. :angry:

If you are using cast iron pans, burn off the old seasoning and rescrub them down with steel wool, then re -season and dedicate to gluten free. If you have a toaster oven, scrub the rack off or lay down aluminum foil. Replace your colander for cooking rice pastas.

If somebody gives you something.... that you cannot confirm the gluten-free status of... save it for later and give it to somebody else. ;)

If you can, go to the store and get a bottle of B complex vitamins that are marked gluten free. Also, a calcium and D magnesium supplement that is gluten free. This will help with the food cravings besides easing some of the symptoms.

To find the status of a food item, google "gluten free name of item you are considering" and see what comes up on the internet. Some brands are good at accurately calling their ingredients out, and some are... not so good.

Try not to add in a lot of new foods at a time, (you have this idea already) so you can more quickly pinpoint a problem item.

Instead of graham crackers, go for the Lundberg gluten-free rice crackers... you can put almost anything on them, including honey or agave syrup and peanut butter. Beans are another good source of gluten free carbohydrates, besides the potatoes. Be sure to thoroughly rinse canned beans to get rid of the hard to digest starch. You can also use fresh sweet corn (corn is one of those things that finding a gluten free processed version can be trickier.)

Try to eat more vegetables, more protein, fewer sugars, as we tend towards high blood sugar problems/insulin resistance partially as a result of our thyroids being challenged by the nutrients we are not absorbing. This means you may be eating a non traditional breakfast of dinner leftovers to feel better, or whatever else instead of "milk and cereal." You can add a non sugar sweetener to yogurt if you are reacting to the ice cream. (warning, splenda in packets is okay, some have reacted to splenda in bulk). You can also use coconut milk as a substitute for cream.

If you really crave a grain like food, you can learn to quickly make flatbreads or microwave bun in bowl breads out of almost anything, including, but not limited to, ground nuts, seed meals, bean flours, potato starch, and gluten free flours, taylored to your particular needs (and what is available gluten free in your area). I have a blender and a coffee grinder and a hand mortar that are dedicated to gluten free grinding for baking, which has saved me a lot of money. I might splurge on a grain grinder some day, but haven't needed one yet. You can also learn to bake gluten free breads out of the same ingredients, or add high protein flours such as teff, quinoa, amaranth, buckwheat, besides the rice flours. The quick breads made with baking soda and apple cider vinegar for leavening are easier to figure out than the yeast gluten free breads. There is also Chebe bread, which is a tapioca mix to which cheese and egg is added.

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Your description of feeling like you have the flu are very words that came out of my mouth when I was trying to describe my weakness. Your symptoms are very similiar to mine in the beginning, not knowing what was going on. I am a 48 year old female and I had been having symptoms for 2 years but all were vague. This does continue to progress and with the dizziness you have I wonder how progressed your situation has become.

My suggestion here is to go real strict on your gluten-free diet.....read all lables, don't use the old pasta striner or toaster. Don't use the wooden spoons in the kitchen....all could be caked with left over gluten. Only eat grains like oats that indicate they are gluten-free. Infact, I personally would stay away from the gluten-free already made products as many of the cookies, breads, etc contain other things like xanthan gum that also does not set well on the stomach and that gets real confusing.

The thing about accpeting foods form other people, is they might be gluten-free but what about their kitchen. So unless I know the person has a gluten-free kitchen I can't eat whatever is made. It is not worth the chance.

I hear that you don't have insurance. The diet might not be enough though. I would wonder where your vit levels are? You very well could have damaged villa in the intestines which are not allowing proper nutrients to your body which can be the reason for some of your symptoms. I would want to know what the levels of your b's, especially B12, d, calcium, iron, magnesium, and potassium.

Something I did that helped is a looked up every symptom I had and then typed in "vitamin deficiency" and I was surprised what I found. Vits A, K, D, B6 you have to be especially careful with. Infact, I would suggest cod liver oil for your A source if you are having trouble with your visiion rather than an A supplement. Cod liver oil is very beneficial in many ways but I found great relief for my vision issues with it. Vit D really should be monitored with blood tests but if any symptoms indicate low d there are guidelines on the internet for safe amounts. I really worked with my diet, tried to get more sun on my skin and was able to raise my d levels.

I think you have found the right place for help. There is alot of wisdom here. There's great info on the Internet. Be patient though. It took me 9 months to get rid of my constant dizziness. I really ahd to get my diet completely clean and make sure I was taking no chances with any contact with gluten but it did go away.

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It took 48 hours for the flu like symptoms to pass, i feel confident the dizzyness will also pass in a few days. The 10 days i did feel good were unbeleveable. My arms and legs are just so weak. i haven"t ate bread in a year now so i don"t miss it any more,i did however eat gluten for that year. In those 10 days i felt my legs an arms were getting better, i went 9 months without meat. Maby i need proten, thats why i started eating chicken and fish. I have some other problems, i have just got my heartburn under control. Lots of foods cause me extreme h/b. I also cant have anything with citric acid, it burns my stomach, no soda, no fruit,etc. thats why i only drink water. I"ve had to get new glasses twice in the last 2 years! I"ll try the cod fish oil. I assume eating fish daily is not the same.

I"ll get some blood work done to check out the vitimans. That may take a couple weeks.

I would like to take some type protin supplment to get my arms and legs from being so weak. Are protin supplments hard to digest? Are any gluten free?

Thanks so much for your reply"s they really build confideance that i can do this with a little help. I"m so excited about feeling better. david

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Eggs, fish, and stewed meats with broth are easy enough to digest and much better for you than eating a protein supplement out of a can. A couple eggs in the morning and a 4 oz. serving of meat at lunch and dinner is plenty of protein to be healthy (probably more than you need). Try hard to avoid processed foods in general. They are not as good for you as real food, and we folks with sensitive stomachs tend to be sensitive to preservatives, artificial flavors and colors, MSG, nitrites, sweeteners, and other chemical additives.

You can definitely do this! I think you will be back to how you felt in those 10 days pretty soon.

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I saw a dr yesterday. He wouldn"t do a blood test for the vits yet, he was more concerned with getting me eating right fruit veggies an meat, no gluten. He also recommended a multi vit. I picked up some nature made multi for him 50+ I was teriffied to take one this morning but said what the heck been sick this long might as well find out if these make me sick an down it went. I also got some cod liver oil, i"ll wait a few days before i start them see how the multi"s do. I made stew beef today with potatoes carrots an onions, it came out great. I didn"t eat the beef just the veggies, an the broth is teriffic. My tummy liked it :)

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Great news! Your doctor sounds good. I have to take my multi with food. If I try on an empty stomach it makes me queasy.

Broth is very healing. :) Eating homemade food like beef stew with lots of veggies is definitely the way to feel better!

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I saw a dr yesterday. He wouldn"t do a blood test for the vits yet, he was more concerned with getting me eating right fruit veggies an meat, no gluten. He also recommended a multi vit. I picked up some nature made multi for him 50+ I was teriffied to take one this morning but said what the heck been sick this long might as well find out if these make me sick an down it went. I also got some cod liver oil, i"ll wait a few days before i start them see how the multi"s do. I made stew beef today with potatoes carrots an onions, it came out great. I didn"t eat the beef just the veggies, an the broth is teriffic. My tummy liked it :)

Read up on the cod liver oil, it is very very good stuff. Will help many things, not just the eyes. My doc says everyone should be taking cod liver oil. Do take your vits with a meal to help with absorbtion and eliminate possible nausea. Sounds like you are on the right track!

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Day 6 an i feel like a human again, i tell you what it sure feels great. I still have some heart pounding, dizzyness, an weak legs an arms. But no anxity attacks, headaches or depression today. It is so hard to belive how sick gluten can make you.

I did some research on the cod liver oil, i also talked with my pharmacist, i showed him the multi vitimans i"m taking. He said he didn"t think i should take the cod liver oil since i"m taking the multi"s, same as you he said i have to be careful with to much vitiman A. I eat sweet potatoes 3 times a week, one cup of sweet potatos has 767% of your vitiman A dv in it. I should be ok on the vit A. ;) After being so sick for the last 2 years the last thing i"m doing is sitting inside. I"ll be getting some extra vit D from ole mr sun. I went fishing on the beach today it felt great :)

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When i ran out of the fudge shop fudge i had a few hersheys bars, even had a bag of m&m"s no problems. guess ya"ll know where this is going! Well after getting sick off moms fudge, 6 days later i thought i would go get a snack last night. I found the smaller bite size hershey bars are actually cheaper so i got those. Today woke up with that terable headache again, about to thirst to death and extremely dizzy. I think those are my tell tell signs of being glutened. 3 hours after getting up i have the flu like symptoms again. I Hate This I"ll never eat chocolate again! Back to day 1 for me. THANKS HERSHEYS

After some research i see the 1 1/2 oz hershey bars are on the gluten free list, but the 1/2 oz size are not, now that makes a lot of sence...... I don"t feel near as stupid as i do angry!!!!!!!!!

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Hi,

Try not to be too tempted by all that processed foods. I know it is really hard.. we've all been there. Your system is in the very early days of healing and needs a lot of tender care.

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After sleeping 4 hours an waking worse than i was when i layed down i got to thinking.(if thats even possable at this time)

I"m way to new to say anything has gluten, lots of controversy about hersheys on the web. Also checked my food log an yesterday had 3 new items. rutabaga"s, only 2nd day on gluten free multi vitimans, an too many mini hersheys bars, i had been eating 2 mini bars an last nite had 4. So i can"t really say what caused this.

I do know corn, coffee, peanut butter makes me just as sick as bread.

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It could be soy in the candy getting you also. Most chocolate has soy in it. And most chocolate has dairy in it also. So you might have a problem with dairy.

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