Allergy Issues After gluten-free Diet Started

[T.H.]

I've only been on a gluten-free diet for 15 days now, and it's been hell, frankly. I suppose I was expecting something similar to what my father experienced when he went gluten-free - a slow change to less fatigue, less illness, and a general increased feeling of 'well-being.'

Yeah. Not even close.

Since my father has celiac disease and visits often, I knew where to look in the stores for the gluten-free stuff, knew a bit more about what to look out for in food, etc.... So the day after I was diagnosed with celiac disease, I went out and bought some foods to eat, got rid of the gluten in our house, and started eating gluten free.

By day after that, I was nauseous and exhausted. I had pain everywhere. No appetite at all. I ate the gluten-free food for two more days, feeling worse and worse, and was thinking maybe I was still getting gluten from somewhere I wasn't expecting, so I started keeping a food log.

I just kept feeling worse, could barely force myself to eat at all, and I finally cut my food down to chicken, veggies and fruits, and a few grains like quinoa and corn, with a couple gluten-free made foods - like a cereal or two - still there. I started to feel a little better. Just better enough to start looking through my food log and notice that I was feeling better when I WASN'T eating, and worse after eating food.

So, I cut everything down to one ingredient foods - rice and homemade beans, boiled chicken, blueberries, etc... And now I can positively say that my body feels bad when I eat certain foods, but it's beyond weird. I have reactions that are like food intolerances - they are very specific to certain foods, and it's the same reaction to each food. An nasty earache with some foods, blinding headaches with others, spacy headed and heavy/aching arms with others. No itching, no hives, though.

However, they hit quickly like allergies. At first, it was within 15-30 minutes. But after a few days where I tried to just eat foods that didn't make parts of me hurt, if I ate one of the 'bad' foods accidentally, the reactions were happening faster. Peanut butter gave me headaches after 30 minutes at first, and then was down to 4 minutes after a week of staying away from it. Does anyone else recall reactions to foods this way? It seems so odd!

And a few days ago, the reactions changed to my throat starting to swell shut. I've been to the ER twice in the past four days because my throat started swelling after I ate something, but I don't even know which ingredients I'm reacting to! There's only a few ingredients that I know I can eat, now! I still don't itch, don't get hives - just get the aches and pain and the throat swelling, has happened twice more now, just mildly so I haven't gone to the ER for it. Grrrr. At least I have an epipen now.

Has anyone else had this happen to them?! Just suddenly reacting to everything under the sun? I'm miserable right now, and feeling like I'm playing Russian roulette just putting something in my mouth. I've lost 11 pounds in the past 2 weeks. I am currently living on boiled chicken, quinoa and rice, carrots and bell pepper, and blueberries. They're the only things I don't react to at all.

I suppose I'm simply...hoping someone else has gone through this, and can tell me where it ended for you. I've read about intolerances with celiac disease, but I hadn't heard about allergies popping up so quickly like this, especially when I've never had any food allergies that I knew about before now, ever. It's so frustrating and exhausting, to think I've found the answer to why I've been sick and have it all get so much worse, so quickly.

Hoping someone can offer a bit of hope!

As a side note, I should say - I've got a great celiac disease friendly doctor who IS trying to help me through this. For all his celiac patients, he immediately gets you a whole blood panel for food allergies, food intolerances, vitamin deficiencies, etc... Checks you out forward and backwards - so I have already had blood tests for food allergies that will hopefully be back soon so this is a little less scary. It's just all happening so fast that we don't have any test results back yet.

Thanks for your time in reading all this, guys. Again, I'm just hoping that maybe someone, somewhere, has see this before and might have some words of wisdom or encouragement to offer. I could really use them!

T.H.

[ann72601]

  T.H. said:

I've only been on a gluten-free diet for 15 days now, and it's been hell, frankly. I suppose I was expecting something similar to what my father experienced when he went gluten-free - a slow change to less fatigue, less illness, and a general increased feeling of 'well-being.'

Yeah. Not even close.

Since my father has celiac disease and visits often, I knew where to look in the stores for the gluten-free stuff, knew a bit more about what to look out for in food, etc.... So the day after I was diagnosed with celiac disease, I went out and bought some foods to eat, got rid of the gluten in our house, and started eating gluten free.

By day after that, I was nauseous and exhausted. I had pain everywhere. No appetite at all. I ate the gluten-free food for two more days, feeling worse and worse, and was thinking maybe I was still getting gluten from somewhere I wasn't expecting, so I started keeping a food log.

I just kept feeling worse, could barely force myself to eat at all, and I finally cut my food down to chicken, veggies and fruits, and a few grains like quinoa and corn, with a couple gluten-free made foods - like a cereal or two - still there. I started to feel a little better. Just better enough to start looking through my food log and notice that I was feeling better when I WASN'T eating, and worse after eating food.

So, I cut everything down to one ingredient foods - rice and homemade beans, boiled chicken, blueberries, etc... And now I can positively say that my body feels bad when I eat certain foods, but it's beyond weird. I have reactions that are like food intolerances - they are very specific to certain foods, and it's the same reaction to each food. An nasty earache with some foods, blinding headaches with others, spacy headed and heavy/aching arms with others. No itching, no hives, though.

However, they hit quickly like allergies. At first, it was within 15-30 minutes. But after a few days where I tried to just eat foods that didn't make parts of me hurt, if I ate one of the 'bad' foods accidentally, the reactions were happening faster. Peanut butter gave me headaches after 30 minutes at first, and then was down to 4 minutes after a week of staying away from it. Does anyone else recall reactions to foods this way? It seems so odd!

And a few days ago, the reactions changed to my throat starting to swell shut. I've been to the ER twice in the past four days because my throat started swelling after I ate something, but I don't even know which ingredients I'm reacting to! There's only a few ingredients that I know I can eat, now! I still don't itch, don't get hives - just get the aches and pain and the throat swelling, has happened twice more now, just mildly so I haven't gone to the ER for it. Grrrr. At least I have an epipen now.

Has anyone else had this happen to them?! Just suddenly reacting to everything under the sun? I'm miserable right now, and feeling like I'm playing Russian roulette just putting something in my mouth. I've lost 11 pounds in the past 2 weeks. I am currently living on boiled chicken, quinoa and rice, carrots and bell pepper, and blueberries. They're the only things I don't react to at all.

I suppose I'm simply...hoping someone else has gone through this, and can tell me where it ended for you. I've read about intolerances with celiac disease, but I hadn't heard about allergies popping up so quickly like this, especially when I've never had any food allergies that I knew about before now, ever. It's so frustrating and exhausting, to think I've found the answer to why I've been sick and have it all get so much worse, so quickly.

Hoping someone can offer a bit of hope!

As a side note, I should say - I've got a great celiac disease friendly doctor who IS trying to help me through this. For all his celiac patients, he immediately gets you a whole blood panel for food allergies, food intolerances, vitamin deficiencies, etc... Checks you out forward and backwards - so I have already had blood tests for food allergies that will hopefully be back soon so this is a little less scary. It's just all happening so fast that we don't have any test results back yet.

Thanks for your time in reading all this, guys. Again, I'm just hoping that maybe someone, somewhere, has see this before and might have some words of wisdom or encouragement to offer. I could really use them!

T.H.

[ann72601]

I'm going through the same thing. I'm two months in and have only had a couple of days that I didn't get sick. Thanks to the help of advanced members here, I wouldn't have known what to do or what was going on.

I didn't get the great feeling either when I removed the gluten, but instead all these food allergies/sensititives and intolerences began to surface. Other symptoms started to appear. Sicker than I had ever been!! I was so discouraged and was ready to give up. I am not able to eat many of the whole foods because I can't break them down or they're non-organic with the wax, I'm sensitive to most supplements and oils. Allergic, ranging from moderate to severe: milk, casein, soy, all grains, poultry, eggs, beef, pork....and some legumes. I was told by a member to make a list of what I COULD have and that turned the corner for me. My options were slim because I couldn't eat pepper or most spices, so I have learned to love what I can eat. I can eat quinoa, if it's soaked for at least 3 hours, coconut milk, sweet and white potatoes, apples and carrots, peeled and juiced. The last couple of days I've been able to add a bit of liquid B12 and plan to add aloe vera today. I've learned to not trust the label, Gluten Free but rely on my own reaction. I make all my own cleaning and personal products that are very crude, but I will improve on them later. I found Afterglow for my make-up, not that I've felt like wearing any, but it's there. I'm even learning to use the computer for something other than Quick Books.

As I was told here: This didn't happen overnight and it will take time to heal. Keep that food diary, do the gluten inspection constantly, rest, drink lots of pure water, keep a positive attitude and try to get nutrient-packed foods into yourself, even if you have to juice them like I am. My intestinal tract won't handle solids yet, but I am beginning to have some energy which means I'm making progress. I believe you will find a formula for yourself. I want to remind you to ask questions here, of the advanced members. They have it too and weathered this first part of the journey.

From one newby to another........hope you begin to feel better very soon....I'm sorry you're having such a terrible time.

Ann

[T.H.]

Thank you so much for your reply! I am so sorry that you have been going through such hell, but I am glad to know that I am not the only one. That does sound really similar. Carrots and quinoa are some of the only things that I can eat without reacting, as well. Thank you for your tips on how to cope. That is a very good idea, to record what I CAN have. A good way to think of it!

thank you again, so much!

  ann72601 said:

I'm going through the same thing. I'm two months in and have only had a couple of days that I didn't get sick. Thanks to the help of advanced members here, I wouldn't have known what to do or what was going on.

I didn't get the great feeling either when I removed the gluten, but instead all these food allergies/sensititives and intolerences began to surface. Other symptoms started to appear. Sicker than I had ever been!! I was so discouraged and was ready to give up. I am not able to eat many of the whole foods because I can't break them down or they're non-organic with the wax, I'm sensitive to most supplements and oils. Allergic, ranging from moderate to severe: milk, casein, soy, all grains, poultry, eggs, beef, pork....and some legumes. I was told by a member to make a list of what I COULD have and that turned the corner for me. My options were slim because I couldn't eat pepper or most spices, so I have learned to love what I can eat. I can eat quinoa, if it's soaked for at least 3 hours, coconut milk, sweet and white potatoes, apples and carrots, peeled and juiced. The last couple of days I've been able to add a bit of liquid B12 and plan to add aloe vera today. I've learned to not trust the label, Gluten Free but rely on my own reaction. I make all my own cleaning and personal products that are very crude, but I will improve on them later. I found Afterglow for my make-up, not that I've felt like wearing any, but it's there. I'm even learning to use the computer for something other than Quick Books.

As I was told here: This didn't happen overnight and it will take time to heal. Keep that food diary, do the gluten inspection constantly, rest, drink lots of pure water, keep a positive attitude and try to get nutrient-packed foods into yourself, even if you have to juice them like I am. My intestinal tract won't handle solids yet, but I am beginning to have some energy which means I'm making progress. I believe you will find a formula for yourself. I want to remind you to ask questions here, of the advanced members. They have it too and weathered this first part of the journey.

From one newby to another........hope you begin to feel better very soon....I'm sorry you're having such a terrible time.

Ann

[ang1e0251]

I will simply add, don't lose hope! Your system is completely out of whack and is just so sensitive it's like a two year old who learned to say, NO! Just because you are reacting to certain foods now doesn't mean you still will later. After your system has had some healing time, then you can carefully challenge some of those foods. You may be able to reintroduce at that time.

I couldn't eat any fruits when I went gluten-free but now I can eat any fruit. I still can't tolerate fresh dairy but then I haven't been able to for 30 years. I don't expect to get that back. Fermented cabbage is very soothing to the digestion. If you don't make your own, you can buy canned saurkraut and eat a small forkful a day and drink a small amount of juice. I don't love the flavor but I do love how it makes me feel.

Hang in there. It does get better but it does take time.

[bas1017]

Just reading this thread breaks my heart, because I know exactly how you feel and I just hate it that someone else is also experiencing this "hell." I have been gluten free for a few months now and when I do find something that I can eat it gets so redundant I get tired of eating. I used to cook, and love, no make that adore food. Now it has truly become the enemy

I get so afraid to eat because I may get sick, but I have to constantly shovel food in or my blood sugar will get to low....I'm damned if I do, damned if I don't! LOL! Laughter is the best medicine for me. On the occasions I do feel well enough to see friends I make sure they are on constant entertainment alert so I giggle frequently!!

Bloating, D, nausea, fever, chills, increase in blood pressure, feel as if my blood is boiling, light headed, trouble breathing, sore throat, numbness in feet and hands, ringing in ears, anxiety and panic attacks (that screaming in your head that this is it...which has gotten much better as long as I think I am stronger than all of this and I control my mind and body, and everything else, we're all just energy so focus on making it positive). It all sucks but I am glad I know what it is, because the not knowing is even worse.

Listen to your body. I stopped taking my xanax because I want to listen to my body, it is telling me when it is time to fight and not to ignore what I am feeling or WHY I am feeling it, and it needs to be addressed not just placated with meds.

Fight, fight, fight, be positive, positive, positive. You only get one body so taking super precaution and steps to eliminate bad things is worth it. I will beat this cause I'm only 31 and have soooooo much left to do in my life

I hope this finds you positive and thriving...

Brooke