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2 Months In And Frustrated!

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Posted 20 October 2012 - 02:38 PM

Hey everyone,

I recently posted something like this in the college students forum, but I figured that posting in one of the other forums would reacher a broader audience. Iíve been gluten-free for 2 months (Celiac diagnosis was inconclusive, no endoscopy-- however I am positive I have a problem with gluten) and soy/dairy/egg free for 3 weeks. It has been SO up and down, it is driving me crazy! For the first month, I felt great-- I had no issues with stomach cramping and nausea after eating for the first time in 7 years! My energy and moods improved, my appetite returned, my hair stopped falling out. About a month in, my stomach problems came back, which is around when I cut out soy/dairy/eggs. I felt better for a few weeks after that and I began to feel hopeful.

Then, I went home last week for break and I started feeling sick after eating again. All of this week I have been feeling nauseous after eating, no matter what I eat! Before I cut out soy/dairy/eggs, I had burning in my stomach and cramps. Now, its nausea. Iím just so frustrated, because my diet it so limited and this process is so slow! As a college student, I have a hard time getting the rest and control over my diet that I need. Even though my friends are understanding, my life is just so crazy and Iím tired of feeling sick even after working so hard to control my diet. I am positive there is no CC while I am at school, and I keep a food journal. I also take enzymes, L-glutamine, and probiotics. These ups and downs are driving me crazy!

Does anyone have any advice, personal experience, or reassurance to share? Is this normal?? I just needed to vent-- being a celiac/ gluten intolerant, especially as a young adult, is so hard.
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Posted 20 October 2012 - 03:28 PM

I would have the endoscopy or a colonoscopy done. That way they can look for other things besides just celiac. Could be that you are one of those few people who have to take steroids to see an improvement..... But that will never happen until they can get in there and check things out.
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Posted 20 October 2012 - 03:35 PM

Being a celiac is hard no matter what your age. I really wish I had gone gluten free in college; that was when I first began having problems. I wasn't diagnosed until I was in my fifties. It is MUCH better for you to start now. I got very discouraged at first...after the initial excitement of feeling MUCH better. I can remember almost crying in the grocery store because I had to read every label.

My main advice is stick with it...it gets easier...and to be very careful. There is gluten hidden in all sorts of things..foods and non-foods. I even had to change toilet paper and my favorite shampoo because both had gluten. I have talked to people who really have had problems because they have eaten dressings, spices and herbs, and lots of other things that they thought were gluten free. Make SURE what you eat is gluten-free. Many items are marked...others (like many of Newman's products) are clearly listed on their website.

Hang in there! You will figure it out. And don't get too discouraged. When I was first diagnosed, my teenaged kids didn't want to go to restaurants with me. They were embarrassed because I had to ask so many questions and my choices were so limited. Now, they try to find new places and new dishes for me!

It gets better!
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Posted 20 October 2012 - 04:45 PM

Where do you eat when your at school, in an apartment? A dorm? The food place on campus (so not CC free)?

It could be your body is still trying to get better. If so, then its best just to wait it out i'm afraid.
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Posted 20 October 2012 - 05:02 PM

You say you started feeling bad after you went home for break. Was anyone else preparing food for you during that time? Are your family gluten eaters? You could have been cross-contaminated very easily.

The nausea would be consistent with recovery from a glutening. Don't be discouraged, it happens to us all. Now that I am gluten free nausea is my main glutening symptom. All of us have symptoms that last for different periods of time.

You are doing all the right things. You just have to be super careful when eating food that you have not prepared yourself. Even though I'm sure your mom likes to cook for you, she probably does not know ALL the places where gluten lurks, and I am willing to bet that that's why you are feeling bad this week. Next week should be better :)

Hang tight and give your mom some gluten free lessons :D
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 20 October 2012 - 05:02 PM

Where do you eat when you're at school, in an apartment? A dorm? The food place on campus (so not CC free)?

It could be your body is still trying to get better. If so, then its best just to wait it out i'm afraid.

Yes. Are you in your own place where you can be careful about what you eat and it's preparation?

If you have a clinical diagnosis, the college needs to meet you needs, by either offering you personal, clean space in the cafeteria or supplying you with gluten free options.

It sounds like you're in your own place or a shared apartment. Cross contamination with roomies is a large concern?

Also, as mentioned...it might take a while of 100%attempt at gluten free and dairy free to feel the benefits. Healing takes time, just as damage takes time.

You're smart about a food journal. Do you have a shared toaster, or check your makeup,lipstick, lotions, shampoos...anything that can get into your mouth.

Sounds like you are on a good track, but finding some missing pieces. That's a good thing. :) And be balanced, with fruit, grains, proteins and starches.

AND being home, is another lesson. B) Hope you feel better soon.
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Posted 20 October 2012 - 05:10 PM

It is common to become more sensitive once gluten has been removed. Many that remove gluten do feel much better at first only to have some symptoms return. I know my digestive symptoms improved first, but there were times when they would return for seemingly no reason. It took months for me to prevent most glutenings and to figure out the difference between accidental glutening and other foods causing problems.

At times your healing system may react to any food which will leave you confused. I found it helped to note positive changes as well as negative. For many months the only positives were that my nails, skin and hair all were healthier. If you have a day that you feel good - take note of what you ate during the past two days - the positives can really help when you are frustrated by negative symptoms.

Try to limit gluten-free processed foods - the advice of sticking with whole foods is repeated here regularly because it really does help to remove processed foods while healing.

The ups and downs are likely to continue for some time - hang in there and come in here to vent - no matter the age, we understand your frustration.
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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


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Posted 20 October 2012 - 08:06 PM

Thank you everyone for your kind advice! Itís great to hear from people who understand what this is like.

Shadowicewolf/Lisa, I cook for myself in an (almost) private kitchen. It is technically public but almost no one uses it, and I have all my own food, utensils, and pans. I was CCíd way too many times at the dining halls when I first started the diet, so I donít eat there anymore!

Mushroom, Iím pretty sure I was CCíd at home last Friday. My mom made me dinner...after that I insisted on cooking for myself for the rest of the visit! :) My whole family eats gluten so Iím not surprised. However, usually when I am CCíd I have tummy troubles, anxiety and exhaustion for two days, and then I am fine. I did go 3 weeks between CCís though so perhaps my reaction has changed.

GottaSki, I like your idea of keeping track of the positives as well as negatives! Almost every other symptom I had before going gluten-free has disappeared completely or greatly improved. I have much more energy, my anxiety and panic attacks are gone, my iron is up, I have an appetite again, my hair has started to grow back, and my stomach cramping/D is gone. This is how I know I am on the right track! It just seems that for some reason my tummy is lagging behind.

The strangest thing to me is that things just seem to change on a weekly basis. One week I feel great with no stomach issues, the next it is gas, the next it is nausea. I can make myself a gluten-free sandwich and feel fine one day, then make the same sandwich under the same circumstances the next day and then feel sick. It makes no sense to me. I hope you all are right and that I am just healing, and that this will eventually go away! It does seem to be improving--very slowly, but nonetheless.

Again THANK YOU EVERYONE, it is so great to have this support! Good health and happiness to you all.
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Posted 21 October 2012 - 05:54 AM

Sounds like your off to a great start, keeping a food log is the only way during healing. I often wish i had started out like you, took me 2 months to remove dairy an 9 months to remove corn. If i had it to do over i think i would have been better to remove gluten,dairy,soy,and corn. Then i could have kept a food log and figured it out from there. Seems that would have been much quicker, and i would have spent many,many, less weeks sick. The dairy and soy symptoms are not so bad but the corn is just as bad if not worse than gluten! (for me)
I would recommend picking out a couple fresh meats some fresh veggies an fruits, live off those a couple weeks an then start adding from there. Stay away from packaged and caned foods right now. Do not let gluten-free labels tempt you (most are not gluten-free)! Rembember your going to have bad days even if you don"t eat anything wrong. Use those days to continue checking non food items for gluten. Don"t go anywhere hungry, if your going to be away from home a while take your gluten-free items with you. If anyone ask if your hungry tell them you just got finished eating :D
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Posted 27 October 2012 - 08:44 AM

I certainly understand your concern. You're trying so hard but you still don't feel better. I actually faced the same problems. I followed a gluten-free diet for 2+ years after diagnosis but always seemed to feel worse. After 2 years of suffering, I researched celiac specialists after my GI doctor wrote me off and found Dr. Fasano at the University of Maryland Center for Celiac Disease. He told me that I was "extra sensitive: and even the little bits (less than 20ppm) of gluten I was getting from gluten-free foods was too much. I was prescribed his elemental diet. I was on this diet for 3 months before I could gradually introduce more foods. It essentially reset my immune system and for the first time ever my TTG, etc. scores were in normal range. You may want to consider making an appointment with this center (he isn't seeing patients after December) but there are other good doctors there. My insurance didn't cover my visits there, but trust me it was worth it. This is just my opinion but I hope it helps.
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Posted 27 October 2012 - 11:13 AM

I have not yet heard anyone say whether they have tried, but I have seen Probiotic products that are 7-day regimens for times when the gut gets into bad shape for more reasons than just gluten. I wonder if it would be worth a shot? Today's probiotics contain millions up to 35-70 billion bacteria cells to help get the gut the type and variety of bacteria it needs. Diarrhea and other things flush the good and bad bacteria, so replacement is sometimes necessary for celiacs. Personally, I take VitaCost 10/20 probiotic and I'm doubling up right now each day because I got glutened less than a week ago. The healing was slow without the probiotic, but the symptoms of glutening went away faster after I started the probiotics. Could be coincidental healing, but worth the shot since they're not harmful at all.

I am just throwing it out there in case you get frustrated and look for more immediate help. My 20 billion cells is minimal compared to that 7 day regimen that is something upward of 200billion per day. I think that's why the time period is so short. I read how many trillion bacteria cells are in our gut, but I cannot recall. Hitting it with heavy probiotics is possibly something to help more quickly get the gut in order.

If you are interested in probiotics, without knowing if you take them already, there is a lot of info online. I found that 1) you need more than one probiotic in order to heal the whole gut so look for those that contain multiples. THe one I chose has 10, but there are many types...2) the ones you find in a store seem to be of lower cell count than those at GNC or vitaminshoppe. Amazon also has a lot...3) They are not terribly expensive and you can get a discount for buying multiple bottles at vitamin shoppe, not sure about GNC or others...4) There are some accounts by specialists detailing why they prescribe them for patients with Celiac while others seem to ignore the possibility they can help. Mostly it seems as though those who do not prescribe them are less knowledgeable about what they can do rather than having evidence that they do not work.

Good luck with whatever you find that works. There is also information online from several specialists encouraging people to take a dietary enzyme with every meal in order to aid digestion. It may not be gluten that is now bothering you, but something that just irritates an already tender gut. I don't take an enzyme, and probably should, but perhaps that's another possible avenue to research and decide if it's right for you. Hope you find the answer soon and can really get healing.
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