I Don't Know What To Do Anymore!

lovechild · July 5, 2013

I have been on a gluten free diet for the past 2.5 months and I felt good for a little while but for the past 2 months I am having some other food intolerance issues as well and my health keeps yo-yoing daily. I also have low vitamin B12, low ferritin, hypothyroid symptoms (I am on Armour Thyroid), and have some other issues such as tingling, low blood sugar, headaches and brain fog. I have currently cut out gluten, dairy, soy, mustard, mostly anything with added sugar and eggs out of my diet.

I am waiting for my ELISA food intolerance results to come back (hopefully in the next week or so)and in the meantime I have been eating foods that seem to not bother me, or so I think they don't. I have been eating at home only and have been careful to choose only gluten free items and I am also careful of cross contamination in my kitchen.

Some days I feel wonderful, like yesterday when at lunch I walked 20 blocks on my break and had energy to spare. Then there is today where I feel so nauseas, dizzyness, headachy, complete body soreness, weakness, stomach pains that if I get any worse I am considering going to the hospital. I feel like death warmed over right now!

This is what I ate yesterday because maybe I am eating something that I shouldn't be:

Breakfast

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Lunch

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Dinner

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Snacks

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Maybe my problem is I am eating too much of a variety of foods. Should I just eat chicken and rice for every meal for a couple of days to see if I feel better?

I am also taking supplements that my naturopath gave me (vitamin D6, vitamin B12, B6, Iron, Chromium, Max Methyl, Estro Adapt, Ubiquinol). Should I also cut those out for a couple of days?

I am at my wits end because I am tired of feeling so crappy and in 1 weeks time we are going to Disneyland with my family and although they have lots of gluten free items there I am not sure what I am going to eat if I need to really restrict my diet so that I don't feel crappy every day. I am really looking forward to this trip and I want it to be a fun experience for my family as well.

Thanks in advance for any tips you can give me.

shadowicewolf · July 5, 2013

Remove the oatmeal for a while. Some cannot tolerate it this soon after a dx.

HumanDecency · July 5, 2013

It really could be any of that stuff. I know I react to hemp seeds. Which is unfortunate because I love them and they are quite nutritious. I'm hoping it passes. I also react to corn. You may want to consider some form of elimination diet. I'm still progressing, but I had to eat salmon and green beans for dinner for a week to discover my corn reaction.

I hope you feel better. *internet hugs*

notme · July 5, 2013

Remove the oatmeal for a while. Some cannot tolerate it this soon after a dx.

i agree. and if i'm trying to figure out what's bothering me, i do the (boring) elimination diet. like you said, eat the same thing (plain) and add in your suspect food and see what you are reacting to.

20 blocks! that's awesome! and that was a good day it's pretty early in, you are bound to have some good ones and bad ones (sometimes, seemingly for no reason) then you will start to have noticably more and more good ones.

ps - i didn't do so well with the 'fake' cheese, for some reason, so i quit eating any kind of cheese altogether until i could re-introduce real cheese again. also quinoa didn't like me. it might like me by now, but my feelings are still hurt so i may never forgive it haha

good luck

lovechild · July 5, 2013

Remove the oatmeal for a while. Some cannot tolerate it this soon after a dx.

Thanks Shadowicewolf. It is not really oatmeal exactly. It is more like a porridge with flax, dates, hemp, goji berries. I can't remember the name of it right now but my Mom is going to call me with the name shortly because she also bought some. I only started eating it three days ago but I think i am going to cut it out for a while anyway in case I am reacting to it.

lovechild · July 5, 2013

It really could be any of that stuff. I know I react to hemp seeds. Which is unfortunate because I love them and they are quite nutritious. I'm hoping it passes. I also react to corn. You may want to consider some form of elimination diet. I'm still progressing, but I had to eat salmon and green beans for dinner for a week to discover my corn reaction.

I hope you feel better. *internet hugs*

I actually just started the hemp seeds a couple of days ago. Maybe I am reacting to that too! This is so frustrating! I am going to have to google an elimination diet to try. I don't know if it is healthy just to only eat chicken and rice for breakfast, lunch and dinner every day.

Salax · July 5, 2013

I would stick to a Paelo diet for a month and then slowly reintroduce items back in. Thats how I discoved I am intolerant to corn and cow milk products. Basically eat meat, fruit and veggies, no grains..except quinoa (maybe), I would cut all grains, but if your bored with food that might be ok. And no white potatoes. Only sweet potatoes/yams.

I hope you feel better soon.

lovechild · July 5, 2013

i agree. and if i'm trying to figure out what's bothering me, i do the (boring) elimination diet. like you said, eat the same thing (plain) and add in your suspect food and see what you are reacting to.

20 blocks! that's awesome! and that was a good day it's pretty early in, you are bound to have some good ones and bad ones (sometimes, seemingly for no reason) then you will start to have noticably more and more good ones.

ps - i didn't do so well with the 'fake' cheese, for some reason, so i quit eating any kind of cheese altogether until i could re-introduce real cheese again. also quinoa didn't like me. it might like me by now, but my feelings are still hurt so i may never forgive it haha

good luck

Thanks Notme! Can I ask what you were eating when you started on your boring elimination diet?

cyclinglady · July 5, 2013

Cut out the oats as suggested. I had problems with oats and quinoa too! I'm only into the diet three months. Hopefully, I'll get these grains back. Also, I don't know what's in the "fake" cheese, but it can contain casein or whey (cow's milk) and I'm intolerant to these. Believe it or not, I tested as having moderate issues to bananas and celery!

lovechild · July 5, 2013

Ok, the porridge I was eating is called boring porridge (flax seeds, sesame seeds, shredded coconut, chia, goji berries, red dates, sea salt) so no oats but this company does make oat cereal so maybe there is oat cross contamination going on. Their product is certified gluten free/wheat free. I think I will take a breather from it anyway in case one of the ingredients is causing me problems.

lovechild · July 5, 2013

Cut out the oats as suggested. I had problems with oats and quinoa too! I'm only into the diet three months. Hopefully, I'll get these grains back. Also, I don't know what's in the "fake" cheese, but it can contain casein or whey (cow's milk) and I'm intolerant to these. Believe it or not, I tested as having moderate issues to bananas and celery!

Maybe I have issues with bananas, quinoa and celery too. Yuck! I am thinking I have a leaky gut because a year ago I could eat anything I wanted without noticeable problems. Uggggg...

These are the ingredients for the fake cheese. The reason I picked it was because it was dairy, casein and whey free.

Filtered water, tapioca flour, palm fruit oil, non-GMO expeller pressed canola and/or safflower oil, pea protein, coconut oil, inactive yeast, salt, vegetable glycerin, xanthan gum, vegan natural flavours, gum arabic, lactic acid (vegan, for flavor),titanium dioxide (a naturally occurring mineral), natural smoke flavour, vegan enzyme.

Thanks for taking the time to reply. I appreciate it.

notme · July 5, 2013

Thanks Notme! Can I ask what you were eating when you started on your boring elimination diet?

chicken and rice, chicken and rice, chicken and rice. lolz sorry but that is my 'safe' food. hopefully, you don't have any trouble eating rice? when my system evened out, i added something for a few days, if it was ok, i added something different, blah, it's boring but it is helpful. i know how frustrating it is to be suspicious of everything. for me, it's the only way i can figure out what the culprit is. and journal it.

Gemini · July 6, 2013

The only thing I would add is dump the fake cheese because there are a lot of gums in there and they can muck up your gut when first gluten free. Really...wait until you can eat real dairy and go for the real cheese. It's better for you.

It also looks like you are not eating enough protein in your diet. You need a protein at every meal. Not a small amount but at least 4-5 ounces per meal. That should stabilize your blood sugar. Eat lots of fresh veggies and fruit with it, plus some brown rice or potatoes. Eggs and egg whites are an excellent source of protein....eggs are considered the perfect protein because they contain all the essential amino acids for humans.

Good luck and hang in there. You have not been gluten-free for very long and it takes awhile to feel better.

CarolinaKip · July 6, 2013

Don't give up hope!

I actually went months trying to figure it out and be pain free. I'm still not totally pain free, better, but not pain free.

I went whole food and grain free. I was food allergy tested as well. After 3 years, I have found that my food allergies pay a big part of me not feeling well. In my job, I have to be around my allergies and gluten. I'm Celiac with a wheat, barley, peanut, almond, tomato, cantaloupe allergies. I'm soy free and corn free(right now). I limit my dairy intake as well. I was told by my dietitian not to eat gluten-free oats until a year gluten-free, I, however, still do not eat them.

It doesn't have to be so boring There are a lot of wonderful food that is naturally gluten-free.

I still do not eat a lot of gluten-free replacement foods. Keep a food dairy and try to keep it simple in the beginning. It does get better and you will find your way! Hugs

BelleVie · July 6, 2013

Hi lovechild,

Bananas really were causing major problems for me. The only reason I finally figured it out was because one day I took paleo banana muffins to work, ate two for breakfast, and then could barely keep my eyes open I was so "gluten tired." But I knew there was no gluten. So I tried again later. Ate more muffins. Same reaction. Tried once more with a banana by itself. Got horrible stomach pains within the hour. I read somewhere that a lot of celiacs have problems with bananas, so who knows, maybe that's your problem? I hope you figure it out soon!

LChristina · July 6, 2013

If I can be of any help, quit processed food! G.f. Means 20ppm of gluten, not to mention additives, sweeteners, chemicals, preservatives... to name but a few!

Eat fresh, homemade cooked food, based on vegetables, salads, meat and chicken. Try that for at least three days to be able to check how your body reacts. I started as simple as that, and then started adding just one processed food. In my case, I can't tolerate dextrose and maltodextrine, although they are considered gluten free. In your case it could be something else. You can have a look at this article Open Original Shared Link

If this is not the answer, try different food only gradually. There are those who, because of the damage caused by gluten, can't tolerate dairy or rice for some time. But it has to be one thing at a time. I myself avoided milk for about two months but can consume it now. As for the rest, we eat only what I can cook at home. My own bread, cake and biscuits, my own salad dressing made of organic and safe ingredients, my own tomato sauce for ketchup. Gluten free, in the market industry, doesn't mean healthy and, by no means, safe for consumption!!

Wish you the best!

Gemini · July 7, 2013

The gluten free standard may state up to 20ppms but that does not mean there is 20 ppm of gluten in the product. All of the products I use do not contain any of the above mentioned chemicals and additives and the vast majority do not. I am not sure what labels you are reading. Although gluten-free products generally contain more sugar and fat, they are safe for consumption as far as gluten goes.

I agree about the dairy....most Celiacs will have trouble with that for awhile but rice? Plain rice is a safe food and I know very few people who don't tolerate rice well. Rice is a low allergy food.....like bananas are.

I just looked at that link you provided and it contains erroneous information. Corn an rice are safe for people with Celiac Disease.

w8in4dave · July 7, 2013

I agree with the processed and Dairy foods!! Just go as natural as possible!!

Pegleg84 · July 8, 2013

2 1/2 months is still pretty early days. It could be your gut is still healing from the gluten damage, and your system is all wonky at the moment. It might be a little early to do a full elimination diet, especially if leaky gut is making you react to things for no real reason. If in a few months you're still having problems, then it's time to look for intolerances.

Natural, unprocessed foods that are easy on the system is probably a good idea. Sometimes dense grains can cause issues too. I have trouble with quinoa, and good grains like brown rice (though I'm fine with oats. go figure) because they are just harder to digest in general. Everyone is different though. Keep it simple: veg, protein, safe grains. And if it bothers you, don't eat it.

Another thing that might help is digestive enzymes. They break things down and make it easier to digest. It's been a huge help for me.

Stay tough. This could be some gluten-free growing-pains that a lot of us go through at some point.

Good luck

notme · July 8, 2013

I just looked at that link you provided and it contains erroneous information. Corn an rice are safe for people with Celiac Disease.

indeed, gem is correct - corn and rice are safe.

kareng · July 8, 2013

If I can be of any help, quit processed food! G.f. Means 20ppm of gluten, not to mention additives, sweeteners, chemicals, preservatives... to name but a few!
Eat fresh, homemade cooked food, based on vegetables, salads, meat and chicken. Try that for at least three days to be able to check how your body reacts. I started as simple as that, and then started adding just one processed food. In my case, I can't tolerate dextrose and maltodextrine, although they are considered gluten free. In your case it could be something else. You can have a look at this article Open Original Shared Link
If this is not the answer, try different food only gradually. There are those who, because of the damage caused by gluten, can't tolerate dairy or rice for some time. But it has to be one thing at a time. I myself avoided milk for about two months but can consume it now. As for the rest, we eat only what I can cook at home. My own bread, cake and biscuits, my own salad dressing made of organic and safe ingredients, my own tomato sauce for ketchup. Gluten free, in the market industry, doesn't mean healthy and, by no means, safe for consumption!!
Wish you the best!

That link is just confusing. It is a link to a group that wants to make money off of people with Celiac. It is not " scientific" . Corn and rice are safe.

Foods that are tested below 20 ppm ( many certified gluten-free foods in the Us are actually tested at 10 parts per million or less) do not necessarily contain 19 ppm of gluten or 5 ppm. They may contain 0.

lovechild · July 10, 2013

Thanks everyone for your replies and tips! I really appreciate it! As mentioned in my original post, for this past week or so I have been feeling really terrible including extremely bad heartburn. I went to see my doctor yesterday and he put me on some DGL (chewable licorice supplements) for heartburn, gastro relief, L glutamine powder, a potent probiotic and more gastric enzymes. Today I am feeling so much better already. I still have a ways to go but so far DGL has been doing wonders for my heartburn! I still feel tired but my nausea has almost all but subsided too.

Anyway, I posted this message in the Food Intolerance section of this message board but I thought I would also paste it here as it helps to explain why I was feeling so bad this last little while! I needed to also cut out eggs, almonds and garlic which I was eating in abundance every day. Duh!

I just received my results from my food intolerance panels from Meridien Labs (testing for IgG4 and IgG antibodies). I am so thankful to have these results as now I can start on the road to recovery!

I ended up doing both food panels (which included spices) for a total of 196 allergens and most of my results were in the low range with a few main ones in the high to moderate range.

High (avoid): All dairy and casien, garlic, egg whites

Moderate (avoid for 6-12 months and then challenge): gluten, almond, egg yolks, alfalfa, grapefruit, kidney beans, chili powder, tumeric, navy bean, malt

Low (but in the high range of the category): vanilla, corn, white grape, water cress, water chesnut, kale, beef

I have been avoiding all gluten for the past almost 3 months and I felt amazing for the first 3 weeks after going off it and then I had a homemade pizza with cheese on it and got really sick and decided to go off all dairy for a while. I sort of knew that I had a problem with dairy as when eating it I was always stuffed up with sinus headaches, clearing throat constantly and sometimes diarrhea.

As well, everytime I have eaten sunny side up eggs in the past I have gotten an itchy throat. I told my doctor about it so he did an blood based allergy test and it came back negative. I continued to eat eggs up until yesterday when I got my test results. I also noticed that every time I ate eggs I had brain fog and was extremely tired. Now I know that eggs don't agree with me!

Now as for almonds I eat them every single day as either almond milk, almond butter or as regular nuts. Last week I had some almond butter right before bed and as I was falling asleep I kept gasping for air in my sleep. I would wake up and my heart would be beating very fast which would make me scared to go to sleep. I didn't put two and two together at the time. No wonder I have been feeling really crappy lately! duh!

My doctor has said that I will be eating mostly meat, fruit, vegetables and nuts and seeds (except almonds). So far I am starving on this diet but I have been incorporating coconut oil and avocado to fill me up.

We are off to Disneyland next week with the kids and I know they have lots of gluten free options but dairy free, egg free, garlic free and almond free is going to make it a little more challenging to eat.

I know this is going to be challenging as gluten-free baking usually involves almond flour and now I also have to use rice milk, coconut milk, hemp milk etc. instead of almond milk. Garlic and egg seem to be in everything too unless you only make your food from scratch.

That said, I am still happy that I had this test because being sick sucks and hopefully in time I can feel back to my old self again. Yah!

Do you have any tips or experiences you can share with me about your own food intolerances and how you cope? Also, if you have taken the ELISA test, have you been able to reintroduce some of your moderate level foods?

Thanks!

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