Six months in - so many food intolerances, can hardly eat anything

[strawberrymoon]

Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help.

I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests.

I would be greatful for any replies. Thanks for reading.

[Ennis-TX]

Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,   

As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.

 

[GFinDC]

Hi strawberrymoon,

If you are having a blood sugar problem, that can cause nerve damage and tingling.  Nerve damage is often associated with diabetes.  You can ask your doctor to check your A1C level to get an idea how it has been doing.

It would probably help your glucose levels to stick with a paleo style diet, avoiding most carbs.  Carbs and meats have a different affect on blood glucose.  Carbs tend to spike blood glucose while meats even it out.

There are a lot of negative changes that can happen with high blood glucose.  It is wise to try and get it under control ASAP.  My brother has lost most of his vision in one eye now from high blood glucose.  And he has the tingling symptoms you described.  The tingling can progress to pain in time.  My brother chose to ignore his diabetes and is paying the price for it.  He is doing better at it now but the damage is done.

Yes, B-12 deficiency can cause those kind of nerve symptoms.  But if you have high blood sugar that is the more common cause.   Diabetes is not a rare condition.

[cyclinglady]

Are you vegan or vegetarian?   I am concerned about your lack of protein and fats in your diet.  These diets can work when you are also gluten free, but as a celiac you can be malnourished.  It is hard to heal when you are slowly starving yourself.   No offense, but some newly diagnosed celiacs end up with food disorders.  Perhaps working with a dietician can help.  

What actually are your blood glucose levels?  Did you know that just as Hashimoto's is common with celiacs, so is type 1 diabetes?   Ask your doctor for antibodies testing for Type 1 diabetes (TD1), if your blood glucose levels are not in the normal  range.  You can develop TD1 (LADA) at anytime.   For adults there is a "honeymoon" period which can last for up to five years. 

Be on the watch for other AI issues (besides TD1) too.  

It is so important to monitor your health after a celiac disease diagnosis!  

[strawberrymoon]

19 hours ago, Ennis_TX said:

Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,   

As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.

 

Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.

[strawberrymoon]

9 hours ago, GFinDC said:

Hi strawberrymoon,

If you are having a blood sugar problem, that can cause nerve damage and tingling.  Nerve damage is often associated with diabetes.  You can ask your doctor to check your A1C level to get an idea how it has been doing.

It would probably help your glucose levels to stick with a paleo style diet, avoiding most carbs.  Carbs and meats have a different affect on blood glucose.  Carbs tend to spike blood glucose while meats even it out.

There are a lot of negative changes that can happen with high blood glucose.  It is wise to try and get it under control ASAP.  My brother has lost most of his vision in one eye now from high blood glucose.  And he has the tingling symptoms you described.  The tingling can progress to pain in time.  My brother chose to ignore his diabetes and is paying the price for it.  He is doing better at it now but the damage is done.

Yes, B-12 deficiency can cause those kind of nerve symptoms.  But if you have high blood sugar that is the more common cause.   Diabetes is not a rare condition.

Hi thanks for this. The kidney function test I a few weeks ago came back normal but there was a question mark over ketones, they said it was all okay, then last week the doctor rang me as there was ketones in a urine sample and I have to repeat the test next week. I'm a bit confused if they weren't worried about the blood test.

 

I feel for your brother, that sounds awful what he's been through. I have started to get some pain in the leg that is permanently numb, I really hope I find some answers soon. Thanks again.

[strawberrymoon]

5 hours ago, cyclinglady said:

Are you vegan or vegetarian?   I am concerned about your lack of protein and fats in your diet.  These diets can work when you are also gluten free, but as a celiac you can be malnourished.  It is hard to heal when you are slowly starving yourself.   No offense, but some newly diagnosed celiacs end up with food disorders.  Perhaps working with a dietician can help.  

What actually are your blood glucose levels?  Did you know that just as Hashimoto's is common with celiacs, so is type 1 diabetes?   Ask your doctor for antibodies testing for Type 1 diabetes (TD1), if your blood glucose levels are not in the normal  range.  You can develop TD1 (LADA) at anytime.   For adults there is a "honeymoon" period which can last for up to five years. 

Be on the watch for other AI issues (besides TD1) too.  

It is so important to monitor your health after a celiac disease diagnosis!  

Thanks for replying. I have been a vegetarian for 31 years, I guess my diet now means I am a vegan but not by choice. Blood tests have picked up a lack of protein and I have seen a dietician who said she couldn't help me and referred me to a specialist who deals with IBS, which I don't understand as I don't have that.

 

I don't know my blood glucose levels but I think I will find out. I know Hashimoto's and type 1 diabetes is common in Celiac's, I asked my doctor for a thyroid antibodies test but he refused but I'll ask for the type 1 diabetes antibodies test. Thanks again.

[Jaemac]

Hi Strawberry. Your plight sound much like what happened to me about 4 years ago. I figured out I had celiac disease and went gluten free. Then about 4 months later I started getting sick. Over the next year I found that I got ill on more and more foods. By the end of the year I was down to about 12 foods. I ate carrots, broccoli, onions, sweet potatoes, spinach, romaine lettuce, celery, light mayo, chicken and eggs. I was so afraid of fruit that I stopped it altogether and gave up most all nightshades too. In fact I had trouble eating stuff everyone said was healthy like avocado, nuts, tomatoes, seeds, KALE!!  I realized there had to be something wrong so I started researching my own health, what could be wrong with me? What I discovered was leaky gut syndrome. Now, I didn't know if there were tests you could get for that so I just decided to heal myself. (I also had a doctor I had trouble convincing of anything to do with diet). I researched what to take as supplements, vitamins and what foods to avoid until I could heal more. I did learn that you can have deleterious effects from foods that you don't know are making you sick so I took out foods that had a tendency to make people sick. I learned about FODMAPS, which are foods that have special chain carbohydrates in them and they can cause problems in digestion. If you're seeing a doctor for IBS they will probably mention FODMAPS as there is a diet to help with IBS. Even if you don't have IBS you can still benefit from a diet low in FODMAPS. That's what I did. Sorry for not having as many details about what I did or being able to explain the FODMAP problem but I cured myself over the next year or so and now it's been about 2 years since. I know that I solved whatever problem I had (I think it was indeed a leaky gut) because now I am reintroducing all those foods that I hadn't eaten. Just this week I've added peppers back in. With leaky gut there are microscopic holes in  your intestine that lets tiny pieces of undigested food out, it also lets out bacteria etc and the body attacks those invaders. Therefore you may find as you have something you could in fact eat now, later as your body makes antibodies against that food, then you get sick on that. That's why doctors talk about what a user mentioned above, using a rotation diet. That tries to prevent the body from having enough time to build up antibodies to any one food. I decided to heal the problem instead. Now I don't get ill from food. I'm still really careful with avocado, oats (I assume I'm just too sensitive to them as many celiacs are) and I eat a paleo diet much of the time. I allow myself a treat of a gluten-free bagel once a week for instance. But mostly it's all about the veggies, good fats and good proteins. NO dairy. My biggest and best thing was making my own veggie soup in bulk. I'd put carrots, celery, onions, broccoli etc with low sodium chicken broth and a bunch of Mrs. Dash (now I can also use garlic too) and I boil it until everything is soft then use the Vitamix to blend it smooth. To this day, this is my breakfast. I add an ounce of whatever protein I have on hand including a boiled egg if thats all I have and a sprinkling of good fat. It works great, fills me up and sets me up for no pain. Good luck. I sure hope this helped. It took me over a year of lots of supplement, probiotics and lots of water to heal my gut but I feel great now.

[cyclinglady]

6 hours ago, Jaemac said:

Hi Strawberry. Your plight sound much like what happened to me about 4 years ago. I figured out I had celiac disease and went gluten free. Then about 4 months later I started getting sick. Over the next year I found that I got ill on more and more foods. By the end of the year I was down to about 12 foods. I ate carrots, broccoli, onions, sweet potatoes, spinach, romaine lettuce, celery, light mayo, chicken and eggs. I was so afraid of fruit that I stopped it altogether and gave up most all nightshades too. In fact I had trouble eating stuff everyone said was healthy like avocado, nuts, tomatoes, seeds, KALE!!  I realized there had to be something wrong so I started researching my own health, what could be wrong with me? What I discovered was leaky gut syndrome. Now, I didn't know if there were tests you could get for that so I just decided to heal myself. (I also had a doctor I had trouble convincing of anything to do with diet). I researched what to take as supplements, vitamins and what foods to avoid until I could heal more. I did learn that you can have deleterious effects from foods that you don't know are making you sick so I took out foods that had a tendency to make people sick. I learned about FODMAPS, which are foods that have special chain carbohydrates in them and they can cause problems in digestion. If you're seeing a doctor for IBS they will probably mention FODMAPS as there is a diet to help with IBS. Even if you don't have IBS you can still benefit from a diet low in FODMAPS. That's what I did. Sorry for not having as many details about what I did or being able to explain the FODMAP problem but I cured myself over the next year or so and now it's been about 2 years since. I know that I solved whatever problem I had (I think it was indeed a leaky gut) because now I am reintroducing all those foods that I hadn't eaten. Just this week I've added peppers back in. With leaky gut there are microscopic holes in  your intestine that lets tiny pieces of undigested food out, it also lets out bacteria etc and the body attacks those invaders. Therefore you may find as you have something you could in fact eat now, later as your body makes antibodies against that food, then you get sick on that. That's why doctors talk about what a user mentioned above, using a rotation diet. That tries to prevent the body from having enough time to build up antibodies to any one food. I decided to heal the problem instead. Now I don't get ill from food. I'm still really careful with avocado, oats (I assume I'm just too sensitive to them as many celiacs are) and I eat a paleo diet much of the time. I allow myself a treat of a gluten-free bagel once a week for instance. But mostly it's all about the veggies, good fats and good proteins. NO dairy. My biggest and best thing was making my own veggie soup in bulk. I'd put carrots, celery, onions, broccoli etc with low sodium chicken broth and a bunch of Mrs. Dash (now I can also use garlic too) and I boil it until everything is soft then use the Vitamix to blend it smooth. To this day, this is my breakfast. I add an ounce of whatever protein I have on hand including a boiled egg if thats all I have and a sprinkling of good fat. It works great, fills me up and sets me up for no pain. Good luck. I sure hope this helped. It took me over a year of lots of supplement, probiotics and lots of water to heal my gut but I feel great now.

Hi!  

Leaky gut is real!  Read this about Zonulin discovered by Dr. Fasano and his team (one of the leading celiac researchers):

Open Original Shared Link

And if you have time watch a video he is in:

Glad to hear a success story! 

 

[NightSky]

On 30/09/2016 at 9:14 PM, strawberrymoon said:

Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.

Hi,

I had similar issues with reducing right down what I have been eating. I am still continuing with the Fasano diet and Paleo diet but am slowly reintroducing some foods using a food challenge method taught to me by a dietician. (Wait until symptoms have subsided then during the morning have a portion of the food you want to reintroduce. Then the following day double the portion, third day - treble it. Reintroduce one food every two weeks.) 

I understand your caution about trying different foods. I think you are in a good position (now that you have eliminated so much from your diet) to reintroduce things in a systematic way starting with the one you miss the most! Except gluten I imagine

It can be overwhelming, the number of different diets but there is no substitute for both specialist advice and listening to your body as you carefully and systematically test out foods.

I paid for an in depth assessment of my diet by a trained professional and it came out as having every nutrient I need so it's possible to do even if you are grain free, dairy free or whatever.

Good luck 

[strawberrymoon]

On 04/10/2016 at 7:49 AM, Jaemac said:

Hi Strawberry. Your plight sound much like what happened to me about 4 years ago. I figured out I had celiac disease and went gluten free. Then about 4 months later I started getting sick. Over the next year I found that I got ill on more and more foods. By the end of the year I was down to about 12 foods. I ate carrots, broccoli, onions, sweet potatoes, spinach, romaine lettuce, celery, light mayo, chicken and eggs. I was so afraid of fruit that I stopped it altogether and gave up most all nightshades too. In fact I had trouble eating stuff everyone said was healthy like avocado, nuts, tomatoes, seeds, KALE!!  I realized there had to be something wrong so I started researching my own health, what could be wrong with me? What I discovered was leaky gut syndrome. Now, I didn't know if there were tests you could get for that so I just decided to heal myself. (I also had a doctor I had trouble convincing of anything to do with diet). I researched what to take as supplements, vitamins and what foods to avoid until I could heal more. I did learn that you can have deleterious effects from foods that you don't know are making you sick so I took out foods that had a tendency to make people sick. I learned about FODMAPS, which are foods that have special chain carbohydrates in them and they can cause problems in digestion. If you're seeing a doctor for IBS they will probably mention FODMAPS as there is a diet to help with IBS. Even if you don't have IBS you can still benefit from a diet low in FODMAPS. That's what I did. Sorry for not having as many details about what I did or being able to explain the FODMAP problem but I cured myself over the next year or so and now it's been about 2 years since. I know that I solved whatever problem I had (I think it was indeed a leaky gut) because now I am reintroducing all those foods that I hadn't eaten. Just this week I've added peppers back in. With leaky gut there are microscopic holes in  your intestine that lets tiny pieces of undigested food out, it also lets out bacteria etc and the body attacks those invaders. Therefore you may find as you have something you could in fact eat now, later as your body makes antibodies against that food, then you get sick on that. That's why doctors talk about what a user mentioned above, using a rotation diet. That tries to prevent the body from having enough time to build up antibodies to any one food. I decided to heal the problem instead. Now I don't get ill from food. I'm still really careful with avocado, oats (I assume I'm just too sensitive to them as many celiacs are) and I eat a paleo diet much of the time. I allow myself a treat of a gluten-free bagel once a week for instance. But mostly it's all about the veggies, good fats and good proteins. NO dairy. My biggest and best thing was making my own veggie soup in bulk. I'd put carrots, celery, onions, broccoli etc with low sodium chicken broth and a bunch of Mrs. Dash (now I can also use garlic too) and I boil it until everything is soft then use the Vitamix to blend it smooth. To this day, this is my breakfast. I add an ounce of whatever protein I have on hand including a boiled egg if thats all I have and a sprinkling of good fat. It works great, fills me up and sets me up for no pain. Good luck. I sure hope this helped. It took me over a year of lots of supplement, probiotics and lots of water to heal my gut but I feel great now.

 

On 04/10/2016 at 7:49 AM, Jaemac said:

Hi Strawberry. Your plight sound much like what happened to me about 4 years ago. I figured out I had celiac disease and went gluten free. Then about 4 months later I started getting sick. Over the next year I found that I got ill on more and more foods. By the end of the year I was down to about 12 foods. I ate carrots, broccoli, onions, sweet potatoes, spinach, romaine lettuce, celery, light mayo, chicken and eggs. I was so afraid of fruit that I stopped it altogether and gave up most all nightshades too. In fact I had trouble eating stuff everyone said was healthy like avocado, nuts, tomatoes, seeds, KALE!!  I realized there had to be something wrong so I started researching my own health, what could be wrong with me? What I discovered was leaky gut syndrome. Now, I didn't know if there were tests you could get for that so I just decided to heal myself. (I also had a doctor I had trouble convincing of anything to do with diet). I researched what to take as supplements, vitamins and what foods to avoid until I could heal more. I did learn that you can have deleterious effects from foods that you don't know are making you sick so I took out foods that had a tendency to make people sick. I learned about FODMAPS, which are foods that have special chain carbohydrates in them and they can cause problems in digestion. If you're seeing a doctor for IBS they will probably mention FODMAPS as there is a diet to help with IBS. Even if you don't have IBS you can still benefit from a diet low in FODMAPS. That's what I did. Sorry for not having as many details about what I did or being able to explain the FODMAP problem but I cured myself over the next year or so and now it's been about 2 years since. I know that I solved whatever problem I had (I think it was indeed a leaky gut) because now I am reintroducing all those foods that I hadn't eaten. Just this week I've added peppers back in. With leaky gut there are microscopic holes in  your intestine that lets tiny pieces of undigested food out, it also lets out bacteria etc and the body attacks those invaders. Therefore you may find as you have something you could in fact eat now, later as your body makes antibodies against that food, then you get sick on that. That's why doctors talk about what a user mentioned above, using a rotation diet. That tries to prevent the body from having enough time to build up antibodies to any one food. I decided to heal the problem instead. Now I don't get ill from food. I'm still really careful with avocado, oats (I assume I'm just too sensitive to them as many celiacs are) and I eat a paleo diet much of the time. I allow myself a treat of a gluten-free bagel once a week for instance. But mostly it's all about the veggies, good fats and good proteins. NO dairy. My biggest and best thing was making my own veggie soup in bulk. I'd put carrots, celery, onions, broccoli etc with low sodium chicken broth and a bunch of Mrs. Dash (now I can also use garlic too) and I boil it until everything is soft then use the Vitamix to blend it smooth. To this day, this is my breakfast. I add an ounce of whatever protein I have on hand including a boiled egg if thats all I have and a sprinkling of good fat. It works great, fills me up and sets me up for no pain. Good luck. I sure hope this helped. It took me over a year of lots of supplement, probiotics and lots of water to heal my gut but I feel great now.

Hi jaemac, your post has made me see there is a light at the end of the tunnel.  I too have been reading up on a lot myself and also believe it's leaky gut, despite what the doctors say. I've not found them to be of much help so far and have been doing my own research. I've started re introducing a few vegetables this week in small amounts, so far all is okay, but I'm always on edge after I've eaten.  I've also had to completely cut out fruit from having terrible cramps and brain fog after eating it, the last time I ate a banana it gave me a blinding headache and sent me into a state of mild confusion, it was pretty scary.  The idea of veggie soup sounds good, I might try that once I have enough food back.  Thanks for posting.  I'm glad you have worked things out for yourself and you feel better now :-)

[strawberrymoon]

15 hours ago, NightSky said:

Hi,

I had similar issues with reducing right down what I have been eating. I am still continuing with the Fasano diet and Paleo diet but am slowly reintroducing some foods using a food challenge method taught to me by a dietician. (Wait until symptoms have subsided then during the morning have a portion of the food you want to reintroduce. Then the following day double the portion, third day - treble it. Reintroduce one food every two weeks.) 

I understand your caution about trying different foods. I think you are in a good position (now that you have eliminated so much from your diet) to reintroduce things in a systematic way starting with the one you miss the most! Except gluten I imagine

It can be overwhelming, the number of different diets but there is no substitute for both specialist advice and listening to your body as you carefully and systematically test out foods.

I paid for an in depth assessment of my diet by a trained professional and it came out as having every nutrient I need so it's possible to do even if you are grain free, dairy free or whatever.

Good luck 

Hi, I've started trying a few different foods this week, I'm not sure about having the same thing more than one day in a row as that's when the problems start.  I'll keep that idea in mind though for sometime later down the line. Are things better for you now after trying this method?

[Jaemac]

19 hours ago, strawberrymoon said:

 

Hi jaemac, your post has made me see there is a light at the end of the tunnel.  I too have been reading up on a lot myself and also believe it's leaky gut, despite what the doctors say. I've not found them to be of much help so far and have been doing my own research. I've started re introducing a few vegetables this week in small amounts, so far all is okay, but I'm always on edge after I've eaten.  I've also had to completely cut out fruit from having terrible cramps and brain fog after eating it, the last time I ate a banana it gave me a blinding headache and sent me into a state of mild confusion, it was pretty scary.  The idea of veggie soup sounds good, I might try that once I have enough food back.  Thanks for posting.  I'm glad you have worked things out for yourself and you feel better now :-)

Hi Strawberry, so glad that my story has given you hope. I didn't have hope for so many years, I actually thought I just might die of this. I'm also really overweight it was actually a possibility, my body deals with celiac much differently than most, I have all the other symptoms but then also my body puts on weight, thinking it's starving to death because I was not taking in the nutrients I was eating. It took over a year of vigilance after I figured out what to do. No doctor was any help in fact, when I was in the hospital five years ago, a week before I decided I had to have celiac no matter whether the doctors would believe me or not (they think fat people can't be celiac). The hospital fed me chicken noodle soup with regular crackers for lunch after I said I couldn't eat gluten! I finally had to agree to eat gluten for the 5 days I was in the hospital because they couldn't figure out what to feed me. When I finally found out about leaky gut it fit all my criteria of symptoms now that I was gluten-free. As I said, it took over a year of taking handfuls of pills and only eating those twelve foods. Yes you do get SICK of carrots etc., lol. I ate so many carrots I actually got a slight orange shade to my very white skin from the beta-carotene, lol. It was SO worth it though! Now that I'm healthy, it feels amazing to not be afraid of the fridge. Also, now that I'm off another medication that was preventing weightless (nothing to do with celiac) I am losing weight really fast, much like you were saying was happening to you. It's like your body says "FINALLY you stopped poisoning me, THANK YOU!". Don't worry about the doctors not understanding, I think all this stuff is too new for doctors to keep up with. I mean, my doctors are still arguing between themselves whether the medication I insisted on going off of would cause me to not lose weight. They don't even notice that I lose 42 pounds in 5 weeks just by going off the meds. They wouldn't believe for all these years that I was NOT eating at mcDonalds and that's why I was fat, lol. Go do what you research, be vigilant, listen to your body and you'll get there. Research is our best friend! Good luck.

[NightSky]

Hello Strawberry Moon, yes, things are better now. For about five years I started and stopped different foods with no method and as someone else on this forum pointed out, that can be crazy-making. I just went back and forwards without improving my understanding of what the problem was. Then I started this method. Cutting out grains, dairy, eggs, pulses, nuts, soy, mushrooms, tomatoes, strawberries, sweetcorn, all spices, stock cubes, vitamins, medicines and all processed foods was the hard part. You have pretty much done that, I think! Reintroducing foods according to the dietician's advice only required a little discipline. Things are better for me since using the method I was advised to use because this way I am finally understanding which foods are a problem and which aren't. It's disappointing when I do get a reaction but on the other hand I can have some things I had cut out. I have pretty much stopped getting the awful reactions that made me so ill because I have been able to fine tune what I'm doing. And I like the feeling of progress. Finally, having as broad a diet as possible is good for healing.

 

[strawberrymoon]

On 07/10/2016 at 7:47 PM, NightSky said:

Hello Strawberry Moon, yes, things are better now. For about five years I started and stopped different foods with no method and as someone else on this forum pointed out, that can be crazy-making. I just went back and forwards without improving my understanding of what the problem was. Then I started this method. Cutting out grains, dairy, eggs, pulses, nuts, soy, mushrooms, tomatoes, strawberries, sweetcorn, all spices, stock cubes, vitamins, medicines and all processed foods was the hard part. You have pretty much done that, I think! Reintroducing foods according to the dietician's advice only required a little discipline. Things are better for me since using the method I was advised to use because this way I am finally understanding which foods are a problem and which aren't. It's disappointing when I do get a reaction but on the other hand I can have some things I had cut out. I have pretty much stopped getting the awful reactions that made me so ill because I have been able to fine tune what I'm doing. And I like the feeling of progress. Finally, having as broad a diet as possible is good for healing.

Hello nightsky, glad to hear you're feeling better with your diet.  Yes I have cut out everything you've said, apart from my thyroid meds which I don't really have a choice over. I've had a pretty bad time trying to reintroduce food since I last posted, so I'm going to leave that a while longer I think.  I'll bear your diet advice in mind though :-)

 

 

[strawberrymoon]

On 06/10/2016 at 8:34 AM, Jaemac said:

Hi Strawberry, so glad that my story has given you hope. I didn't have hope for so many years, I actually thought I just might die of this. I'm also really overweight it was actually a possibility, my body deals with celiac much differently than most, I have all the other symptoms but then also my body puts on weight, thinking it's starving to death because I was not taking in the nutrients I was eating. It took over a year of vigilance after I figured out what to do. No doctor was any help in fact, when I was in the hospital five years ago, a week before I decided I had to have celiac no matter whether the doctors would believe me or not (they think fat people can't be celiac). The hospital fed me chicken noodle soup with regular crackers for lunch after I said I couldn't eat gluten! I finally had to agree to eat gluten for the 5 days I was in the hospital because they couldn't figure out what to feed me. When I finally found out about leaky gut it fit all my criteria of symptoms now that I was gluten-free. As I said, it took over a year of taking handfuls of pills and only eating those twelve foods. Yes you do get SICK of carrots etc., lol. I ate so many carrots I actually got a slight orange shade to my very white skin from the beta-carotene, lol. It was SO worth it though! Now that I'm healthy, it feels amazing to not be afraid of the fridge. Also, now that I'm off another medication that was preventing weightless (nothing to do with celiac) I am losing weight really fast, much like you were saying was happening to you. It's like your body says "FINALLY you stopped poisoning me, THANK YOU!". Don't worry about the doctors not understanding, I think all this stuff is too new for doctors to keep up with. I mean, my doctors are still arguing between themselves whether the medication I insisted on going off of would cause me to not lose weight. They don't even notice that I lose 42 pounds in 5 weeks just by going off the meds. They wouldn't believe for all these years that I was NOT eating at mcDonalds and that's why I was fat, lol. Go do what you research, be vigilant, listen to your body and you'll get there. Research is our best friend! Good luck.

Hi jaemac, again, I can relate to a lot of what you've said here.  I think my weight gain over the last 15 years was to do with gluten, I'm still losing weight, in stops and starts, but I'm nearly at my natural weight now so I'm not worried at the moment. I know what it's like to be scared of opening the fridge!  I've tried to reintroduce some vegetables since last posting but it's been pretty awful so I'm leaving that for now.  Can I ask how many probiotics you were taking when things were really bad for you?  I'm taking a mega strength acidophilus 2 x a day, 6 billion good bacteria in all, 4 different strains, do you think that's enough?  I'm wondering if I should be taking more or another type as well. I must say it's strange how one of my life goals is now to be able to eat a tomato or a bit of red pepper! 

[Jaemac]

On October 28, 2016 at 3:56 PM, strawberrymoon said:

Hi jaemac, again, I can relate to a lot of what you've said here.  I think my weight gain over the last 15 years was to do with gluten, I'm still losing weight, in stops and starts, but I'm nearly at my natural weight now so I'm not worried at the moment. I know what it's like to be scared of opening the fridge!  I've tried to reintroduce some vegetables since last posting but it's been pretty awful so I'm leaving that for now.  Can I ask how many probiotics you were taking when things were really bad for you?  I'm taking a mega strength acidophilus 2 x a day, 6 billion good bacteria in all, 4 different strains, do you think that's enough?  I'm wondering if I should be taking more or another type as well. I must say it's strange how one of my life goals is now to be able to eat a tomato or a bit of red pepper! 

Hi Strawberry, that probiotic seems awfully low. I was on a 50 billion twice a day but then I was so sick I was only up for a total of 12 hours a day at the very most so I only usually ate twice with maybe a snack. If I was up from 7am until 10pm and had three normal meals I would have done what the bottle said and taken one for every meal. If I had known then what I know now i also would have tried to get prebiotics in too. It couldn't (and still can't now) be yogurt but I'd see if there were any veggies in the allium family that I could eat regularly and I'd research if there were any more prebiotics I could add too. They also recommend that if you can, try switching your brand of probiotic every month or so, still staying at about 50 billion if you can. In the city I live in there's only one choice of 50 billion so If I wanted to switch I'd have to go down to 30ish billion. It's that every probiotic uses different bacteria and we want to build up as many good kinds as we can. I still take two probiotics a day but I use 25 billion now (only because I can't afford the 50 billion continuously where I live). Hope that helps. good luck, keep trying and don't give up.

[strawberrymoon]

On 30/10/2016 at 5:50 AM, Jaemac said:

Hi Strawberry, that probiotic seems awfully low. I was on a 50 billion twice a day but then I was so sick I was only up for a total of 12 hours a day at the very most so I only usually ate twice with maybe a snack. If I was up from 7am until 10pm and had three normal meals I would have done what the bottle said and taken one for every meal. If I had known then what I know now i also would have tried to get prebiotics in too. It couldn't (and still can't now) be yogurt but I'd see if there were any veggies in the allium family that I could eat regularly and I'd research if there were any more prebiotics I could add too. They also recommend that if you can, try switching your brand of probiotic every month or so, still staying at about 50 billion if you can. In the city I live in there's only one choice of 50 billion so If I wanted to switch I'd have to go down to 30ish billion. It's that every probiotic uses different bacteria and we want to build up as many good kinds as we can. I still take two probiotics a day but I use 25 billion now (only because I can't afford the 50 billion continuously where I live). Hope that helps. good luck, keep trying and don't give up.

You have no idea how helpful you've been, I live in the UK in a small town so need to look online for probiotics. I've found one that has 30 billion so will start with that when I can. I've never heard of prebiotics so will look into that too.

Sounds like you were really bad, I'm not far off where it sounds like you were. I usually manage 2 small meals a day ( if you can call them meals)! and a snack on the salad I can eat. I thought I was okay with a dairy free mayonnaise but it seems I can't have anything processed no matter what it says on the jar. All my meals are very dry and boring at the moment but I have faith it will improve with time. 

I hope things continue to get better for you, you've been a great help :-)

[Jaemac]

19 hours ago, strawberrymoon said:

You have no idea how helpful you've been, I live in the UK in a small town so need to look online for probiotics. I've found one that has 30 billion so will start with that when I can. I've never heard of prebiotics so will look into that too.

Sounds like you were really bad, I'm not far off where it sounds like you were. I usually manage 2 small meals a day ( if you can call them meals)! and a snack on the salad I can eat. I thought I was okay with a dairy free mayonnaise but it seems I can't have anything processed no matter what it says on the jar. All my meals are very dry and boring at the moment but I have faith it will improve with time. 

I hope things continue to get better for you, you've been a great help :-)

Hi Strawberry,

so glad this helped you. About mayo, I find it really helps add flavor and since I eat a ton of tuna and boiled eggs it's pretty necessary so everything isn't dry. I use Hellmann's light but if you cannot use commercial mayo you can make your own really, really easily using a blender just look up a simple recipe, make it and store it in the fridge and use it for the next 7 days (here's a basic mayo recipe Open Original Shared Link

I ate pretty basically, here's what my daily regime was:

breakfast: 1 can tuna (in water, skipjack light flaked) or 2 hardboiled eggs 1-2T Hellmann's Lite, shredded lettuce, pepper  plus a bowl of homemade vegetable soup (low salt broth, carrots, celery, zucchini, onions, broccoli + Mrs Dash and if you can handle salt then add salt, it really helps with flavor as does sautéing the onions and carrots first) and sometimes either a piece of gluten free toast or some gluten-free crackers

snack: baby carrots dipped in lite mayo or Hidden Valley Ranch dressing or a bowl of veggie soup or if I had them in the house I'd have some grapes

Dinner: 3-4 oz pork loin or chicken, a romaine salad with cucumber and tomato if I could tolerate it, 1-2T olive oil, squirt of lemon juice and generous pepper, little salt. sometimes I'd add half a sweet potato and later I added steamed or sautéed veggies  like in the soup but sautéed in the oven until all roasted up, add that on top of the salad, makes it less boring. If I could tolerate it I'd add some nuts to the salad like cashews or almonds and cranraisins. 

That's it. The veggie soup is what saved me and to this day I still have that for breakfast every single day, it ensures I get my veggies. I take a boat load of vitamins, 5000 units of vitaminD, a B complex, omega 3's, 2 Tumeric capsules, Magnesium, Vit K and glucosamine for my joints. Hope all this helps, and I sure hope you feel better soon!

[strawberrymoon]

On 01/11/2016 at 11:26 PM, strawberrymoon said:

You have no idea how helpful you've been, I live in the UK in a small town so need to look online for probiotics. I've found one that has 30 billion so will start with that when I can. I've never heard of probiotics so will look into that too.

Sounds like you were really bad, I'm not far off where it sounds like you were. I usually manage 2 small meals a day ( if you can call them meals)! and a snack on the salad I can eat. I thought I was okay with a dairy free mayonnaise but it seems I can't have anything processed no matter what it says on the jar. All my meals are very dry and boring at the moment but I have faith it will improve with time. 

I hope things continue to get better for you, you've been a great help :-)

 

5 hours ago, Jaemac said:

Hi Strawberry,

so glad this helped you. About mayo, I find it really helps add flavor and since I eat a ton of tuna and boiled eggs it's pretty necessary so everything isn't dry. I use Hellmann's light but if you cannot use commercial mayo you can make your own really, really easily using a blender just look up a simple recipe, make it and store it in the fridge and use it for the next 7 days (here's a basic mayo recipe Open Original Shared Link

I ate pretty basically, here's what my daily regime was:

breakfast: 1 can tuna (in water, skipjack light flaked) or 2 hardboiled eggs 1-2T Hellmann's Lite, shredded lettuce, pepper  plus a bowl of homemade vegetable soup (low salt broth, carrots, celery, zucchini, onions, broccoli + Mrs Dash and if you can handle salt then add salt, it really helps with flavor as does sautéing the onions and carrots first) and sometimes either a piece of gluten free toast or some gluten-free crackers

snack: baby carrots dipped in lite mayo or Hidden Valley Ranch dressing or a bowl of veggie soup or if I had them in the house I'd have some grapes

Dinner: 3-4 oz pork loin or chicken, a romaine salad with cucumber and tomato if I could tolerate it, 1-2T olive oil, squirt of lemon juice and generous pepper, little salt. sometimes I'd add half a sweet potato and later I added steamed or sautéed veggies  like in the soup but sautéed in the oven until all roasted up, add that on top of the salad, makes it less boring. If I could tolerate it I'd add some nuts to the salad like cashews or almonds and cranraisins. 

That's it. The veggie soup is what saved me and to this day I still have that for breakfast every single day, it ensures I get my veggies. I take a boat load of vitamins, 5000 units of vitaminD, a B complex, omega 3's, 2 Tumeric capsules, Magnesium, Vit K and glucosamine for my joints. Hope all this helps, and I sure hope you feel better soon!

Hi Jaemac,

Thanks for the mayonnaise recipe :-) I've been looking into making bone broth, not sure where that stands with me being a vegetarian but I feel like I've got no choice and need a hell of a lot more nutrients than I'm getting. I've found a local farmer who sells small batches of bone specifically for broth, all from organic farms and grass/pasture fed animals so I'm going to give that a go. I'm quite looking forward to experimenting with it, not to mention I won't have to eat dry potatoes anymore! 

 

It seems like your diet was fairly limited, although not as limited as mine but I guess that's because I don't eat meat (I've been very tempted a few times lately though)!  Sounds like you got things worked out well, I hope I can too. Your homemade soup sounds very nice, did you make your own broth?

I'm taking a lot of the supplements you mentioned, but I do still have memory problems so often forget to take them, I'll have to work out a routine so I make sure I take them.

Thanks you've been a great help :-)

[Ennis-TX]

Have you tried adding Braggs Nutritional Yeast or Kals to your meals? I find it helps out with a bunch of nutrients, and has a nice nutty, cheese like flavor so can be used in sauces, or as a condiment. I use it on chopped sauteed salads with toasted seeds for meals often. Start off sauteing some veggies in a bit of oil, and some seeds (GERBs Hemp, Sunflower, Or Pumpkin work great here) to toast them a bit then throw in the chopped greens of the day, gluten-free cooked noodles (optional), sprinkle with seasonings, and perhaps a tomato based sauce or just a balsamic vinegar and water then stir it all up and serve in a bowl with either egg white ribbons or a protein shake. Note change it up to fit your diet and use the foods that are safe for you this is just a base idea for a quick 10min stir fry dish.

 

[Jaemac]

19 hours ago, strawberrymoon said:

 

Hi Jaemac,

Thanks for the mayonnaise recipe :-) I've been looking into making bone broth, not sure where that stands with me being a vegetarian but I feel like I've got no choice and need a hell of a lot more nutrients than I'm getting. I've found a local farmer who sells small batches of bone specifically for broth, all from organic farms and grass/pasture fed animals so I'm going to give that a go. I'm quite looking forward to experimenting with it, not to mention I won't have to eat dry potatoes anymore! 

 

It seems like your diet was fairly limited, although not as limited as mine but I guess that's because I don't eat meat (I've been very tempted a few times lately though)!  Sounds like you got things worked out well, I hope I can too. Your homemade soup sounds very nice, did you make your own broth?

I'm taking a lot of the supplements you mentioned, but I do still have memory problems so often forget to take them, I'll have to work out a routine so I make sure I take them.

Thanks you've been a great help :-)

Hi Strawberry,

I've tried making bone broth and I didn't think I was very successful at it until just last week when I bought some commercially made bone broth (It's made locally here for our grocery stores and is authentic with no additives) and this stuff tasted just like what I had made. I thought I'd made a mistake as mine tasted like dishwater. Well that seems to be what it's supposed to taste like, not like chicken broth, lol. If you make it just know it won't add flavor to your potatoes it will add nutrients though. 

Also, I didn't know you were a vegetarian. As I assume you have trouble eating beans (as do most people, i mean we all know the jokes about beans) are you sure you're getting enough protein? What is your main protein source? If it's soy/tofu, you may want to explore that this may be one of the things making you ill. Soy can be really controversial. I looked up some of the symptoms of not eating enough protein, they are below.Oh, and if you're having trouble with the milk in butter you can make it into Gee which essentially involves melting it and skimming off the milk proteins to then it won't bother any lactose intolerance you may have. Just look up how to do it. Gee can also be purchased if money isn't a problem for you. Then you'd be able to add flavor to your potatoes. If you want to try a good chicken broth the one I use is called Better Than Bouillon and it's fantastic, it's pricy and does have a fair amount of salt but it salt isn't your problem then that may be a way to add flavor to your potatoes too, just make the water into a chicken broth and the potatoes will absorb it. The company also makes vegetable broth but I like the chicken better, lol. Hope the info below helps.

Eating too little protein can result in these symptoms as well:

• A sluggish metabolism
• Trouble losing weight
• Trouble building muscle mass
• Low Open Original Shared Link and fatigue
• Poor concentration and trouble learning
• Moodiness and mood swings
• Muscle, Open Original Shared Link
• Blood sugar changes that can lead to diabetes
• Slow wound healing
• Low immunity

[Rowan13]

Hi,

Just wondering have you looked into oxalates and oxalate levels of foods that bother you? I've discovered that the high and very high levels of oxalates in some foods seems to make me sick. I've learned that if I stay under a certain level of oxalates per day it is better for me. Open Original Shared Link

This is the main site I learned a lot about it and also the associated Yahoo group/forum. I've already realized I'm reacting to Salicylates, histamines and a lot of other stuff. Like you I get down to only a handful of foods but I've managed a few times to get somewhat better by checking to make sure I'm not ingesting high levels of of any of these components. However, I didn't understand gluten & dairy was making me sick and kept regressing. I at least have more awareness that for example spinach has massive amounts of oxalate & steer clear. (Though I loved spinach as a child) Oxalates build up in the system and if you consume more in a day than you can break down it can make you feel very ill, poisoned almost and cause a lot of side effects.

What seems to help me a bit is magnesium salt baths, but not too much! I even react to too much of that. Also dead sea salt mixed with the magnesium. My fav brand is Ancient Minerals flakes which I order directly from their site. Also drinking plenty of water and I like Smart water, distilled water sometimes and less often spring because that can make me feel sick too. Getting out in the fresh air can help but when I'm really sick even that can make me feel worse. But I feel my lessening of exercise and being in the outdoors (because of being sick & other stresses) has contributed to my getting sicker. (A catch 22)

Using google calendar or something like that is helpful for me to keep track of when I've been sick, what i ate, etc.  Even if I can just write a few sentences later I can look back and possibly see a pattern. I know now I can NOT drink coffee anymore. At least not for now. Staying up late on the computer strains me too but I admit I still do it because it also cheers me up. But I know if I overdo that it affects me in the next few days. Bone broth made me feel awful but I don't know why. It seems any time I boil or simmer something for a long time it doesn't make me feel well.  And finally, you probably know it already but the Open Original Shared Link website is quite good for supplements, special food products & other pharmacy type products. I also like this companies products, Open Original Shared Link especially the Sensitive probiotics. (But I've only just gone gluten free so I'm not at all sure that that product is safe.)  Sorry for this mish mash.  Best wishes.

 

[strawberrymoon]

On 03/11/2016 at 1:06 AM, Ennis_TX said:

Have you tried adding Braggs Nutritional Yeast or Kals to your meals? I find it helps out with a bunch of nutrients, and has a nice nutty, cheese like flavor so can be used in sauces, or as a condiment. I use it on chopped sauteed salads with toasted seeds for meals often. Start off sauteing some veggies in a bit of oil, and some seeds (GERBs Hemp, Sunflower, Or Pumpkin work great here) to toast them a bit then throw in the chopped greens of the day, gluten-free cooked noodles (optional), sprinkle with seasonings, and perhaps a tomato based sauce or just a balsamic vinegar and water then stir it all up and serve in a bowl with either egg white ribbons or a protein shake. Note change it up to fit your diet and use the foods that are safe for you this is just a base idea for a quick 10min stir fry dish.

 

Hi Ennis, thanks for replying.  I have a problem with yeast and anything processed at the moment.  I'll try a stir fry maybe adding some seeds like you suggested, I haven't tried any protein shakes, I'll give that a try too.

[Ennis-TX]

5 minutes ago, strawberrymoon said:

Hi Ennis, thanks for replying.  I have a problem with yeast and anything processed at the moment.  I'll try a stir fry maybe adding some seeds like you suggested, I haven't tried any protein shakes, I'll give that a try too.

Note Nutritional yeast is not the same as a active yeast/bread yeast....I can not eat anything with yeast in it. Nutritional yeast is different and safe for most people who can not eat yeast used in breads etc. It is inactive, and for me does not cause any of the issues I get with normal yeast. Do some research into it might be worth a try.