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Hating This, One Year Later.

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WARNING: the content you are about to read contains whining and venting.

Today is my one year gluten free anniversary. I do not eat dairy or soy either, and limit corn intake. I did well for the first few months but then started to feel sick again quite often starting in November. My anxiety and depression have been worse, and I've had some strange symptoms lately, Including:

Intense Migraines (I had bad headaches before but with these I can't get out of bed or have lights on)

Confusion

Twitching in my right arm

Numbness in left fingers

Night sweats

Dizziness and fainting

Low fever

And then the usual nausea, less vomiting than usual, constipation and diarrhea alternating

My "diagnosis" was by an allergy doctor, and I was off gluten for seven months before a biopsy, which of course came back negative. But I've been doubting my diagnosis because I am SO CAREFUL and never ever cheat and still feel like crap. I was really depressed yesterday and was extremely close to going to Mcdonalds and eating a nice breaded chicken burger, but my boyfriend talked me out of it.

So maybe this isn't Celiac, or maybe there is something else going on in addition to gluten intolerance? Maybe this is just wishful thinking?

I'm so frustrated and so upset and angry at this stupid disease and I want it to stop. I don't mind eating gluten free at all, lots of the food is good but what's the point of spending extra money and changing my whole lifestyle if I am still getting sick?

Thanks for reading, encouragement, criticism and opinions welcome!

Devon

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Devon,

Have you been absolutely strict with your diet? Do you eat out a lot? Did you add something back in after the first few months that maybe you are reacting to?

I am so sorry you're frustrated and not feeling well. I would guess that perhaps there is a secondary intolerance, or maybe a parasite/leaky gut issue going on.

Do you frequently eat gluten free replacements? Most things don't have ingredients like xantham gum. Maybe a new thing you added in is giving you issues?

janie

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Hang in there. Don't give in to the gluten.

At some point in , I too felt that I wasn't back to where I wanted to be and began investigating other problems that I suspected or thought possible. We can't figure it out all on our own. There are some very good diagnostic and screening test out there. Make use of them. Ask or demand, if necessary, that your doctor run some. See what turns up. So far, I'm 2 for 2 plus a few suprizes thrown in. As I've started to manage each, I felt that much better. There is hope.

Did your allergist run a food panel? I was quite suprized at how many positive reactions I had and even more suprized at how much my digestion improved when I eliminated all of them and embarked on an elimination/challenge diet per their instructions. I could not have figured them out on my own. The testing gave important direction.

Standard bloodwork from your primary care physician would be a good idea. Some of your symptoms could be indicative of other health problems.

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Do Not Give Up! There is an answer there somewhere.

I have been riding the same trails as you for the last two and a half years. After quitting gluten, next came soy. Next came nightshades. Next came even the potato starch in flour mixes. Next came even the non-GM corn I could formerly eat here in N.Z. The last thing, just recently, that came my way was ALL legumes. I realized I had been pretty much, unconsciously, avoiding the dry legumes and the canned beans like kidney and garbanzo, and very consciously the refried beans. But one night I had a particularly bad night after eating some loin of lamb, half a yam, and some green peas, and I thought, it must be the peas. Since I cut out green peas and beans I have not had what I call "one of my events":

Bloating

Racing, pounding heart and difficulty breathing

Missed and double heart beats

Sweating, fainting

Pain in arms, hands and wrists, knees, shoulders

Fatigue the next day

A chance read of a post here gave me the term lectins, and after some research I found that all these foods are high in lectins, which can do some nasty work. However, they are not well researched yet. So I am just suspecting they might be the root of my problem with gluten as well as the other foods (gluten-containing grains are also high in lectins). What I have learned is that dairy is also high in lectins, but I am able to eat all dairy now (formerly lactose intolerant). From what I read, those who are sensitive to lectins will normally not be sensitive to all lectin groups but may be sensitive to more than one.

Now all this may or may not have any relevance to you. It is offered as an avenue to explore.

In case you are interested in reading about them, here are some links:

http://www.totalhealthbreakthroughs.com/2009/07/lectins-a-little-known-trouble-maker/

http://www.bmj.com/cgi/content/extract/318/7190/1023

Good luck in getting to the bottom of things :)

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Devon,

Have you been absolutely strict with your diet? Do you eat out a lot? Did you add something back in after the first few months that maybe you are reacting to?

I am so sorry you're frustrated and not feeling well. I would guess that perhaps there is a secondary intolerance, or maybe a parasite/leaky gut issue going on.

Do you frequently eat gluten free replacements? Most things don't have ingredients like xantham gum. Maybe a new thing you added in is giving you issues?

janie

I'm very very strict and I refuse to eat at restaurants, the two or three times in the past 8 months I have eaten out I got sick, and that's enough of that. I mainly eat whole foods like meat, veggies and fruit with some gluten free replacements as a treat.

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Just a thought. I see the picture of you on that beautiful horse and with the timing of when you started feeling ill I am wondering if you have been winter riding in an indoor ring. With the grain diet most horses have and all the dust from hay and such perhaps that is giving you enough CC to get you reacting again.

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Sorry you aren't feeling well. Assuming it is a food problem, there are couple things I can think of to check. It sounds like your diet is good, although the gluten-free treats might be something to look into. Some may have traces of gluten even though they are marked gluten-free. It depends on the item though and the manufacturers policy as far as separation of gluten and non-gluten lines. Lots of gluten-free products have soy of course, so you probably already eliminated them. Chips are often fried in soy oil too. I can't do soy either and it made a big difference getting rid of it.

The other things might be vitamin pills with hidden gluten (oat grass, wheat grass juice etc), sodas or other drinks that could be hiding gluten, teas, or any drinks for that matter. Some people have posted that they had changed their lipstick or other cosmetics and it helped. Then their is the boyfriend who eats gluten and could contaminate you possibility also.

Just some things to think about.

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Do Not Give Up! There is an answer there somewhere.

I have been riding the same trails as you for the last two and a half years. After quitting gluten, next came soy. Next came nightshades. Next came even the potato starch in flour mixes. Next came even the non-GM corn I could formerly eat here in N.Z. The last thing, just recently, that came my way was ALL legumes. I realized I had been pretty much, unconsciously, avoiding the dry legumes and the canned beans like kidney and garbanzo, and very consciously the refried beans. But one night I had a particularly bad night after eating some loin of lamb, half a yam, and some green peas, and I thought, it must be the peas. Since I cut out green peas and beans I have not had what I call "one of my events":

Bloating

Racing, pounding heart and difficulty breathing

Missed and double heart beats

Sweating, fainting

Pain in arms, hands and wrists, knees, shoulders

Fatigue the next day

A chance read of a post here gave me the term lectins, and after some research I found that all these foods are high in lectins, which can do some nasty work. However, they are not well researched yet. So I am just suspecting they might be the root of my problem with gluten as well as the other foods (gluten-containing grains are also high in lectins). What I have learned is that dairy is also high in lectins, but I am able to eat all dairy now (formerly lactose intolerant). From what I read, those who are sensitive to lectins will normally not be sensitive to all lectin groups but may be sensitive to more than one.

Now all this may or may not have any relevance to you. It is offered as an avenue to explore.

In case you are interested in reading about them, here are some links:

http://www.totalhealthbreakthroughs.com/2009/07/lectins-a-little-known-trouble-maker/

http://www.bmj.com/cgi/content/extract/318/7190/1023

Good luck in getting to the bottom of things :)

I find your post amazing as I experience many of those same symptoms and I eat a lot of green peas, potatoes, kidney beans and pinto beans. I will cross those off my list and see if things improve!

Thanks for your post.

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Just a thought. I see the picture of you on that beautiful horse and with the timing of when you started feeling ill I am wondering if you have been winter riding in an indoor ring. With the grain diet most horses have and all the dust from hay and such perhaps that is giving you enough CC to get you reacting again.

I have to mention I have had a similar experience with a place. I attended a friends birthday party at a brewery. I didn't drink so I thought I would be fine but just being in the open brewery warehouse after 30 mins I started getting sick. Really bad headache, muscle twitches, shakes, nausea, etc. After 1 hour I had to go home and became incredibly sick. I swear it was the wheat and barley bags and dust during the tour that kicked it off.

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Check out this website: http://celiac.org/index.php?option=com_content&view=article&id=90&Itemid=124

I'm experiencing alot of what you are and its totally deflating. I used to be so active. Now I'm not. My entire life has changed.

Look for a specialist. I found one. He had a "FAQ for Doctors" section and comments on complications with Celiac once a patient has gone gluten-free. He suggests other tests be taken. I was unable to get an appointment with him till the end of January.

In the meantime, I'm going to see my gastro doc and ask that he runs these tests.

I understand how you feel. I'm rooting for you. We can do this :)

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