New Reactions, Afraid To Eat, Can Anyone Relate?

[FruitEnthusiast]

Hi, I'm Sara, new to this forum. I feel really scared and overwhelmed at this point. I could use some encouraging words from someone who understands. This is the third day I've been home sick from work, from new reactions to foods I was tolerating fine last week. I'm actually afraid to eat anything at all now. I only eat whole foods I prepare myself, and never eat out. I'll be calling my ND as soon as her office opens today, but I feel very alone with this problem.

I was diagnosed and have been gluten free for four months. Dairy and processed food free for six months. I was sick for two years trying to figure out what was wrong. My number one symptom has been chronic constipation. That started ten years ago with no apparent cause, and was easily treatable until it got much worse around two years ago. Then I developed new symptoms: blurred vision, trembling in my feet, and joint pain, especially in my lower back. Those have improved since going gluten free, but I keep developing new intolerances. My symptoms now when I have a reaction are generally feeling sore and sick all over, headache, nausea, joint pain, anxiety, difficulty thinking clearly, and some blurred vision. It makes me feel like I'm losing my mind. The chronic constipation continues. I keep thinking I'm starting to get better, but each time I make some headway, another roadblock appears. I tend to be optimistic usually, but this is wearing on me. I'm barely well enough to even go to work, so social activities don't happen - I don't feel well enough or have the energy. In a good week, I'm able to work a 1/2 day at work every day. I don't have the energy to work out. Movies on cable at home keep my spirits up, thank goodness, as I live alone. I'm looking for support groups in my area. I have a couple good leads as soon as I'm feeling well enough to try the phone numbers.

Can anyone relate to any of this? I know it takes a long time to recover, but will I eventually get better and live a "normal" life again?

[Minstinguette]

Have you thought about the usual suspects, aka corn and soy, in addition to gluten and dairy? Check your supplements/medication too.

Good luck! It will get better.

[veronika]

Hi, I'm Sara, new to this forum. I feel really scared and overwhelmed at this point. I could use some encouraging words from someone who understands. This is the third day I've been home sick from work, from new reactions to foods I was tolerating fine last week. I'm actually afraid to eat anything at all now. I only eat whole foods I prepare myself, and never eat out. I'll be calling my ND as soon as her office opens today, but I feel very alone with this problem.

I was diagnosed and have been gluten free for four months. Dairy and processed food free for six months. I was sick for two years trying to figure out what was wrong. My number one symptom has been chronic constipation. That started ten years ago with no apparent cause, and was easily treatable until it got much worse around two years ago. Then I developed new symptoms: blurred vision, trembling in my feet, and joint pain, especially in my lower back. Those have improved since going gluten free, but I keep developing new intolerances. My symptoms now when I have a reaction are generally feeling sore and sick all over, headache, nausea, joint pain, anxiety, difficulty thinking clearly, and some blurred vision. It makes me feel like I'm losing my mind. The chronic constipation continues. I keep thinking I'm starting to get better, but each time I make some headway, another roadblock appears. I tend to be optimistic usually, but this is wearing on me. I'm barely well enough to even go to work, so social activities don't happen - I don't feel well enough or have the energy. In a good week, I'm able to work a 1/2 day at work every day. I don't have the energy to work out. Movies on cable at home keep my spirits up, thank goodness, as I live alone. I'm looking for support groups in my area. I have a couple good leads as soon as I'm feeling well enough to try the phone numbers.

Can anyone relate to any of this? I know it takes a long time to recover, but will I eventually get better and live a "normal" life again?

I'm going through much of this myself right now, you pretty much have covered my life as I know it in this post. After a few months being gluten, dairy, soy free I'm suddenly being hit with new intolerances (ex. potatoes, corn to some extent). I'm sure you are already doing this, but if you are not, keeping a food diary has helped me immensely. It's so hard to tease out what foods are causing you problems without actually seeing trends over time. The healing process is pretty rough from what I gather from reading these forums and talking with other people, so don't be too hard on yourself, there is a lot of trial and error in working all of these things out. If you haven't gotten vitamin levels tested that would also be a good place to start. I myself was severely deficient in iron, and now I've learnt this week, really vitamin D deficient. Both deficiencies are common with celiacs/NCGI and can cause a host of problems from fatigue, aches, anxiety, etc. Eventually things will get better, you are going through a rough spot, but there is a 'normal' life at the other side of this for all of us I think .

[Mnicole1981]

Hi Sara, I'm Melanie. I don't know what to say that may be of comfort, but I definitely feel your pain. Over the weekend, I was out shopping and I got really hungry, so we stopped at the gas station. I bought Cape Cod chips. I unfortunately only had hand sanitizer and although I knew it would not work and that I needed to actually wash my hands, I ate the chips. The next day, I was so sick. Diarrhea, light colored stools, just general sickness. Luckily, I was scheduled off the next day, but I learned a valuable lesson. Always wash your hands prior to eating. I have been so good about that, but I was really, really hungry and we were nowhere near a restroom. I have been constipated for three days now. My stomach was massively bloated and I have been basically forcing food down my throat. I barely want to get out of bed, but I have to be at work. I have been gluten-free for a little over two months now, and I do feel like my energy is there, but then, as you said, you hit a roadblock and you feel like you have to start all over again. I am not diagnosed, unfortunately. The doctor officially claimed I have "IBS" today, so I will go ahead and take that as my Celiac diagnosis.

I don't know whether we'll ever have "normal" days, but we'll have NEW normal days once things get back on track.

[bartfull]

I'm so sorry to hear you are sick! And I understand because I went through the same thing. It seemed like new intolerances were popping up every day, and as my diet shrunk, so did my confidence that I would ever get better.

And you know, I don't have any real answers for you either. The closest I can come to helping you is to pass along some of the info I learned here, and the things the nutritionist told me.

First of all, I'm sure you are keeping a food diary. If not, start one right away. You could be reacting to salicylates, maybe nightshades, maybe other grains. (Corn was a biggie for me.)

But you could be reacting to pesticides on your produce too. The nutritionist told me my system was in "hyperdrive" and was so sensitive it was reacting to everything. She reccommended I go completely organic, and it really helped. For a while, every time I would eat a sweet potato from the grocery store I would have emergency D within hours. But the organic ones didn't bother me at all.

Now, I guess it's about six months later, I can eat grocery store sweet potatoes with no problem. My system has finally settled down.

There are still some things I can't eat though. Apples, blueberries , corn of course, and probably others that I haven't even tried. I'm taking a break from adding new foods for a while. Maybe this fall I'll try a salad. (Leafy greens go through me like water.)

The only other advice I can think of is to make SURE your pots and pans are OK, and your cosmetics and toothpaste are OK. Go to the "newbie" thread and you'll read about all of the places hidden gluten can be lurking.

In the meantime, know that you're not alone, that others have gone through the same type of thing, and that we are here to help.

(((((HUGS))))) to you!

[llama3]

Yeah, this happened to me too. I found keeping a food diary helpful. One thing to consider is that your digestive system is probably damaged from eating gluten and needs time to heal, so you may be reacting to a lot of foods that wouldn't be a problem for a healthy person. I have found a slightly modified form of the GAPS diet to be very helpful; many of the foods that are not allowed on that diet had turned out to be problem foods for me anyway, and most of the foods that are allowed sit well with me, the main exception being eggs which for some weird reason give me headaches. Good luck!

[RonSchon]

Hi Sara,

You aren't alone. I too am going through very similar challenges. In addition to the reality of our condition many of us also are going through the emotional damage of losses due to our inability to get a proper diagnosis.

Every time we get a new contamination, we feel the setback physically, mentally, and emotionally.

I have so much hope for all of us, because "now we know". It does get frustrating when we get some kind of reaction even though we are so diligently trying to prevent it. It's nice to have an outlet of compassionate people who understand the trials.

[FruitEnthusiast]

Thank you so much everyone for your support and insightful comments! It makes me feel so much better to know I'm not alone Non gluten intolerant people are concerned for me, but they don't really "get it ". They are especially puzzled by the way it seems to never end. I read a lot online, so I know it takes a long time for the intestinal lining to heal, up to 18 mos or more in some cases.

I do keep a food diary, and a bm diary too. I don't ever eat soy, corn, or dairy. I found I can't tolerate rice or eggs. I had a blood test to check vit/min levels a couple mos ago, and the only thing low was vit D, so I take that everyday, along with a quality multi vit. I think it would be wise to have labs done again to see where I am now.

I haven't noticed an organic vs non-organic connection so far, but I will keep that in mind. I will also check the newbie list, for cross-contamination possibilities, soaps, etc.

My biggest problem is getting enough protein into my body to keep my blood sugar and muscle mass stabilized. I do great with most fruit and vegetables, but the only real protein sources my body can deal with are beans and nuts/seeds. The only other things I eat are avocados, olive oil, coconut milk, and water. My ND keeps asking me to add tuna to my diet. I just tried it daily for the second time, and again, in less than a week I am backed up with constipation to the point that eating anything at all makes me feel sick.

In the last couple days I had a reaction to gluten free fresh salsa (nightshades I imagine), and strawberries. I had been eating both for months with no problem before that. This morning I had watermelon and felt sick too, so I think it's not the fruit, but the constipation that's the culprit. The tuna in particular has stopped my digestion entirely it seems. I just think things are too upset in there to handle it right now. Constipation has been a problem for many years. I never get get diarrhea like many other gluten intolerants do for some reason.

The only protein source left to try is whey isolate protein powder (with no lactose or casein). Here's hoping that works!

Thanks again, so much, for all the encouraging words!

[RonSchon]

Sara, in my first couple weeks of knowing, I've been contaminated 3 times.

As you alluded, you may have other things that are effecting you - Me too.

One thing I'm committed to is whole foods but also local whole foods. Seriously, I want to be able to walk out into the pasture and pick my cow out of the field. Luckily I found an organic grass only rancher that actually lets you do that.

When you mention tuna, are you talking bumble bee/starkist? Processed. You can't trust what you can't see.

[FruitEnthusiast]

I'm very particular about what I will eat too. The only tuna I ate was Wild Planet Wild Skipjack Tuna, 100% pole and troll caught, low mercury, high omega 3. My ND wanted me to eat a can a day. I think that was a mistake to try so much so fast considering everything else.

I try to buy organic, but if I don't find it in a store, I buy non-organic. I want to start going to the farmer's markets. Not feeling well has made that a challenge, but I agree, it is something that could make a difference, and I could make it more of a priority. My ND doesn't think organic is important. Each health care provider has a different opinion on practically every topic. It would be a dream come true to grow/produce all our own food.

[llama3]

My biggest problem is getting enough protein into my body to keep my blood sugar and muscle mass stabilized. I do great with most fruit and vegetables, but the only real protein sources my body can deal with are beans and nuts/seeds. The only other things I eat are avocados, olive oil, coconut milk, and water. My ND keeps asking me to add tuna to my diet. I just tried it daily for the second time, and again, in less than a week I am backed up with constipation to the point that eating anything at all makes me feel sick.

Eating tuna every day is not a good idea. For one thing there are low amounts of mercury even in the wild-caught variety. Wild Planet says "low mercury," not "no mercury."

Are you unable to digest chicken?

[FruitEnthusiast]

As far as I know chicken is harder to digest than fish. When I tried chicken, it felt heavy in my body and I didn't feel well afterward. Before my diagnosis I ate it almost every day. It makes sense to me when I think about how much chewing it takes for each one. No comparison there. I was considering tuna to be gateway to chicken, in a sense, not for permanent daily consumption. I'm not comfortable eating tuna at all to be honest, considering the mercury possibilities. Some say mercury is in everything we eat now, and it makes no difference whether we eat tuna or something else. I don't know if that's true, and I haven't looked into it. Seems any kind of meat messes me up right now though.

[llama3]

As far as I know chicken is harder to digest than fish. When I tried chicken, it felt heavy in my body and I didn't feel well afterward. Before my diagnosis I ate it almost every day. It makes sense to me when I think about how much chewing it takes for each one. No comparison there. I was considering tuna to be gateway to chicken, in a sense, not for permanent daily consumption. I'm not comfortable eating tuna at all to be honest, considering the mercury possibilities. Some say mercury is in everything we eat now, and it makes no difference whether we eat tuna or something else. I don't know if that's true, and I haven't looked into it. Seems any kind of meat messes me up right now though.

That's really too bad. Have you tried homemade bone broth? That might help. If I were you I would definitely check out the GAPS diet and consider trying the intro, which is mainly broth, stock, and blended soups. You also need to take high-quality probiotics. The idea is to heal your digestion so that, in time, you can introduce more foods.

There is a website for the GAPS diet with a lot of information and detailed FAQ. If you do it, be aware that there will be symptoms as the bad bacteria in your body die off, but they probably won't be worse than what you're going through now, and can be alleviated somewhat with detox baths and other things that she discusses on the website.

[FruitEnthusiast]

That's really too bad. Have you tried homemade bone broth? That might help. If I were you I would definitely check out the GAPS diet and consider trying the intro, which is mainly broth, stock, and blended soups. You also need to take high-quality probiotics. The idea is to heal your digestion so that, in time, you can introduce more foods.

There is a website for the GAPS diet with a lot of information and detailed FAQ. If you do it, be aware that there will be symptoms as the bad bacteria in your body die off, but they probably won't be worse than what you're going through now, and can be alleviated somewhat with detox baths and other things that she discusses on the website.

Thanks so much much for the GAPS diet info. I was not aware of it and I'm looking at it today. Bone broth info too. I'm wondering if strained homemade chicken broth retains any protein. I'll look that up too.

I did great on the 30 day raw food diet, fresh fruit til noon, fresh raw veggies after that, two avocados a day, olive oil, lemon juice, coconut milk, water, with seeds and beans(organic, canned, but well rinsed pinto beans) for protein. That's basically been my diet for the last two months. That cleans me out and gets me on track internally. Then my blood sugar starts to get low and I start to need more protein, that's when the problems start again. I have slow transit constipation. Animal protein gets stuck. It seems the intestinal damage is worsening the constipation issue for now. If I can get over that hump, I can hopefully get back on a more varied diet with more protein. My ND wants me to try whey protein powder next (lactose and casein free). It's the only animal protein source I haven't tried, so I'm keeping my fingers crossed. Eggs make me as sick as gluten right now. She also wants me to try potatoes. It seems I now have a problem with salsa (nightshades I guess) so I'm leery, but also running out of new foods to try.

I take 2 high quality refrigerated probiotics twice a day and Intestinew intestine healing supplement powder twice a day, according to my ND's instructions for leaky gut. I haven't done a detox bath in a while, good reminder.

Thanks again for the support and great ideas

[GFinDC]

HI Sara,

Just going to throw out a few ideas of things to check. Thyroid problems can cause tiredness and C, due to the whole body being somewhat sluggish. Thyroid diseases like Hasshimoto's Thyroiditis can cause low thyroid hormone production. Hashimoto's is more common with celiac disease also.

Are you taking vitamins etc daily? You might be reacting to something in them. It is a simple test to eliminate all of the vitamins etc for a couple weeks and see if things improve.

Nightshades include potato, tomato, peppers and eggplants. You could try eliminating them for a month and see what happens. Sweet potatoes are a different plant family and should be ok.

People sometimes don't consider the things they drink, like sodas or tea, coffee etc. Any of those can be a problem too.

[llama3]

Thanks so much much for the GAPS diet info. I was not aware of it and I'm looking at it today. Bone broth info too. I'm wondering if strained homemade chicken broth retains any protein. I'll look that up too.

I did great on the 30 day raw food diet, fresh fruit til noon, fresh raw veggies after that, two avocados a day, olive oil, lemon juice, coconut milk, water, with seeds and beans(organic, canned, but well rinsed pinto beans) for protein. That's basically been my diet for the last two months. That cleans me out and gets me on track internally. Then my blood sugar starts to get low and I start to need more protein, that's when the problems start again. I have slow transit constipation. Animal protein gets stuck. It seems the intestinal damage is worsening the constipation issue for now. If I can get over that hump, I can hopefully get back on a more varied diet with more protein. My ND wants me to try whey protein powder next (lactose and casein free). It's the only animal protein source I haven't tried, so I'm keeping my fingers crossed. Eggs make me as sick as gluten right now. She also wants me to try potatoes. It seems I now have a problem with salsa (nightshades I guess) so I'm leery, but also running out of new foods to try.

I take 2 high quality refrigerated probiotics twice a day and Intestinew intestine healing supplement powder twice a day, according to my ND's instructions for leaky gut. I haven't done a detox bath in a while, good reminder.

Thanks again for the support and great ideas

Well, I really hope some of it helps. I'm not sure about chicken broth made from meat, but I know that bone broth does have protein in the form of gelatin. I can link you to some online recipes if you PM me.