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jackay

There Is Nothing Left To Eat.

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I am beyond frustrated!

I've been off gluten a couple of years. I had further improvement with my digestion when I started the digestive enzyme Creon about three months ago.

I still don't sleep and feel absolutely wrotten all the time so had food intolerance testing once again. I was hoping with the digestive enzyme that I would show fewer food intolerances and be able to avoid the problem ones. I found out I am intolerant to almost all food including dairy, most meats, lots of seafood, fruits and vegetables. My doctor said he has never seen anyone else with so many intolerances.

I was told to continue to eat the foods that showed up as mild intolerances as I need to eat something.

This poses another problem. I need to take lots of supplements and medication. I make sure all are gluten free but most of my supplements and medications must have corn in them. The Creon contains pork. My multivitamin also contains lemon biflavonoids and soy. Since I never feel good, how do I know if these things are bothering me?

I can't give up the supplements as I need calcium, magnesium and vitamin D for parathyroid issues. I also am low on iron, chromium and zinc. I don't get enough variety of foods so need to take multivitamins and multiminerals.

I also don't think cross contamination of gluten is an issue as I had severe D before I gave up gluten. That isn't the problem anymore. Any suggestions would be greatly appreciated.

A diet free of dairy, meat, fruits and vegetables doesn't leave much left. Wish I could exist on just water.

Any suggestions would be greatly appreciated.

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How are you determining your food intolerances? As far as I know, the only reliable way is elimination and challenge. None of the blood or skin tests are reliable, particularly if you tend to be generally reactive to those sorts of tests.

If it's a matter of "feeling crummy" but your digestive issues are mostly gone, I have to wonder if you have problems other than food. Parathyroid problems can make you feel rotten, and do you have any thyroid issues as well?

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How are you determining your food intolerances? As far as I know, the only reliable way is elimination and challenge. None of the blood or skin tests are reliable, particularly if you tend to be generally reactive to those sorts of tests.

If it's a matter of "feeling crummy" but your digestive issues are mostly gone, I have to wonder if you have problems other than food. Parathyroid problems can make you feel rotten, and do you have any thyroid issues as well?

Skylark,

My food intolerance were detected through blood work. The reason I resorted to them is because I cannot isolate what the problem foods are. I faithfully kept a food journal and the only food that really stuck out for causing insomnia was string beans. I often go two nights in a row without any sleep and am not able to sleep during the day. Therefore, I have constant fatigue and brain fog. I am also anxious and depressed.

My thyroid is normal. My parathyroid was normal last time it was checked and my doctor wants to wait another two months to check it again. My calcium level came back normal so that is a good indication that my remaining parathyroid is functioning normally.

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Skylark,

My food intolerance were detected through blood work. The reason I resorted to them is because I cannot isolate what the problem foods are. I faithfully kept a food journal and the only food that really stuck out for causing insomnia was string beans. I often go two nights in a row without any sleep and am not able to sleep during the day. Therefore, I have constant fatigue and brain fog. I am also anxious and depressed.

My thyroid is normal. My parathyroid was normal last time it was checked and my doctor wants to wait another two months to check it again. My calcium level came back normal so that is a good indication that my remaining parathyroid is functioning normally.

So sorry to hear of your insomnia. Sleep is a miracle for me as well so I completely understand what you are going through. I recently went through six nights of not falling asleep (I was starting a horrible new med) and I could hardly bear it. Thankfully I do not work (other than teach culinary classes a few times a month) but I cannot sleep during the day, either, due to chronic pain and fibromyalgia. My thyroid is normal, too.

Sorry I cannot help you other than to encourage you to keep on hoping you figure out what is going on. Lack of sleep is horrid and that exhaustion translates into all sorts of resultant issues (i.e. brain fog) so I get that it is difficult to do anything the next day! Sometimes having a shower can seem overwhelming when you are that exhausted. Hang in there! :)

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I've got some similarity to you. I was dx'd celiac two years ago, went gluten free - had some improvement - especially digestive, but muscle/joint pain, brain fog, sleep problems have gotten steadily worse. The past few months I've had about an hour of functional time each day and my digestive problems have returned even though we are 99.999999% gluten-free.

I had tried to remove nightshades, diary and more to no avail. Also tried food combining. Nothing has worked. I've been ready more about lectin intolerance & leaky gut and figured out that my only option was elimination diet geared towards autoimmune / leaky gut. I'm on day 4 - currently eating meat, fruits and vegies only - and already had improvement. This diet is the most extreme, but I think it's the only way to determine which lectin groups are toxic to me.

I don't know much about food intolerance testing - I've only had allergy bloodwork which all came back negative. This elimination diet is extreme, yet part of me regrets not knowing about it earlier as the past few years have been extremely tough on my family and I.

Hope you find some answers - hang in there!

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I know how you feel. I was/am in a similar situation but am starting to get better now...

You likely have intestinal dysbiosis (imbalanced flora)... I'd recommend getting a stool test for bacteria, yeast, and parasites (such as the (Company Name Removed - They Spammed This Forum and are Banned) Microbial Ecology stool test, available at www.directlabs.com). Treating the imbalances in your gut flora should help heal leaky gut and reduce your reactions to foods.

Once your gut is in better shape, you might benefit from some type of allergy treatment. There's NAET (www.naet.com), which is like acupuncture without needles. And there's something called Low Dose Allergen therapy, or LDA, which is shots. I had some success with NAET, but will be starting LDA soon -- it seems to have a higher success rate.

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Oh, one more thing. Some people think that oxalic acid/oxalates in the diet can cause or contribute to leaky gut. I have been doing the Low Oxalate Diet for a few months now, and I think that is one reason my food allergies are becoming less severe. See http://lowoxalate.info/index.html

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Skylark,

My food intolerance were detected through blood work. The reason I resorted to them is because I cannot isolate what the problem foods are. I faithfully kept a food journal and the only food that really stuck out for causing insomnia was string beans. I often go two nights in a row without any sleep and am not able to sleep during the day. Therefore, I have constant fatigue and brain fog. I am also anxious and depressed.

I understand how awful the insomnia is. What, exactly, was your "normal" thyroid test result? There are some high TSH reference ranges floating around and if your TSH was above 2.5 it could account for the insomnia, fatigue, brain fog, anxiety, and depression. That is pretty much my list of mild hypothyroid symptoms, plus memory loss, concentration problems, and lack of motivation. My mental symptoms are the last to resolve when my thyroid is "treated correctly" and I have to push on my doctors to treat the mental problems with thyroid hormone and not antidepressants.

Your doctor should have explained that the intolerance bloodwork can only identify potential problem foods, not determine which foods you must avoid. If it was RAST, the test is not even very well validated. IgG4 is problematic; IgG and IgE are a little more useful but definitely nowhere near diagnostic. What allergists recommend is that you eliminate all your blood positives, then reintroduce them one by one. Foods that don't provoke a reaction are OK to eat.

As LC says, a lot of antibodies and food reactions can be a sign of dysbiosis and leaky gut.

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I am 11 months gluten free and due to a continuing skin rash/hives, I am now on a Low Histamine diet...I also am senstive to Salicylates. If this is your problem, then high histamine foods may be making you feel awful. It seems to be working for me. But I've only just learned about the Histamine content of foods, and the hives can be auto-immune OR Allergic...so I'm trying to figure it out too. I felt like I was allergic to everything. When I look at the list of histamine containing foods, I now know why....many "healthy" fruits and vegetables are high in salicylates and/or histamine. I limit those now. Read about it and see what you think It is worth a try to feel better.

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I understand how awful the insomnia is. What, exactly, was your "normal" thyroid test result? There are some high TSH reference ranges floating around and if your TSH was above 2.5 it could account for the insomnia, fatigue, brain fog, anxiety, and depression. That is pretty much my list of mild hypothyroid symptoms, plus memory loss, concentration problems, and lack of motivation. My mental symptoms are the last to resolve when my thyroid is "treated correctly" and I have to push on my doctors to treat the mental problems with thyroid hormone and not antidepressants.

Skylark,

My TSH was 2.2. A while back I had a full thyroid panel and everything was in the normal limits. A few years before this, I was hypothyroid and taking medication. I didn't feel any better when on medication nor when I no longer needed it. Going gluten free obviously improved both my thyroid and parathyroid. However, I had parathyroid surgery not knowing that a gluten free diet may have corrected it. I'll always wonder if I could have avoided the surgery by being gluten free for a longer time.

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If I could get some sleep and concentrate better, I could possibly handle trying a histamine, salicylate, nightshade, oxalate and lectin free diet (along with the candida diet).

What would the safe foods be for all of that? Right now I have such brain fog that I can't put it all together.

If there is any validity in my food intolerance tests, I would like to avoid the worst offenders which are carrots, dairy, eggs, grapes, bananas, lemon, lentils, peahces, radishes, soybeans and turkey.

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If I could get some sleep and concentrate better, I could possibly handle trying a histamine, salicylate, nightshade, oxalate and lectin free diet (along with the candida diet).

What would the safe foods be for all of that? Right now I have such brain fog that I can't put it all together.

If there is any validity in my food intolerance tests, I would like to avoid the worst offenders which are carrots, dairy, eggs, grapes, bananas, lemon, lentils, peahces, radishes, soybeans and turkey.

Well, that's a lot to eliminate all at once, but I guess on that diet you could eat...

chicken, beef, lamb (preferably organic or hormone/antibiotic-free)

white rice (may not be the best for a yeast overgrowth, but... one step at a time)

celery, iceberg lettuce

possibly goat milk products (yogurt, butter, cheese)

This is very limited, but you could start with something like this, then add back one group of foods at a time (such as higher salicylate vegetables) to see if they are problematic for you. This is assuming you would start to feel better on the limited diet.

Do you by any chance have silver (mercury) fillings in your teeth?

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Skylark,

My TSH was 2.2. A while back I had a full thyroid panel and everything was in the normal limits. A few years before this, I was hypothyroid and taking medication. I didn't feel any better when on medication nor when I no longer needed it. Going gluten free obviously improved both my thyroid and parathyroid. However, I had parathyroid surgery not knowing that a gluten free diet may have corrected it. I'll always wonder if I could have avoided the surgery by being gluten free for a longer time.

Funny, my TSH was 2.2 this spring and I had awful thyroid symptoms. Sounds like you don't have the same sort of brain reaction to low-normal thyroid that I do, which is good. I was soooo messed up this spring.

I hope you can sort out the food intolerances better. I really feel for you with the insomnia. I had it for years and at one point went a week with hardly any sleep during a manic episode. My doctor finally gave me Seroquel, which knocked me out for three days. :lol: Thank heavens I'm past those days. One thing that helps me is fish oil. I take one purified triple-strength capsule a day and it makes a lot of difference in how well I sleep. If I slack on my supplements or fish oil, the insomnia creeps back.

I also used to take a little tryptophan if I had gone a few nights sleeping poorly. Tryptophan works great if I take it once, the second night less well, and by the third night it has no effect for me. Because of the fast tolerance I used to use it maybe once a week as a last resort. Other things I've used with some success are passion flower herb capsules and an alcohol valerian tincture. (Careful with valerian as it's not good for your liver taken long-term.) Maybe these will help while you're figuring things out.

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Well, that's a lot to eliminate all at once, but I guess on that diet you could eat...

chicken, beef, lamb (preferably organic or hormone/antibiotic-free)

white rice (may not be the best for a yeast overgrowth, but... one step at a time)

celery, iceberg lettuce

possibly goat milk products (yogurt, butter, cheese)

This is very limited, but you could start with something like this, then add back one group of foods at a time (such as higher salicylate vegetables) to see if they are problematic for you. This is assuming you would start to feel better on the limited diet.

Do you by any chance have silver (mercury) fillings in your teeth?

Yes I have silver (mercury) fillings and figure they may be a problem. However, I have a whole mouth full of them and can't afford to have them replaced. I often wonder if I have to live in this agony for the rest of my life because of them.

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Funny, my TSH was 2.2 this spring and I had awful thyroid symptoms. Sounds like you don't have the same sort of brain reaction to low-normal thyroid that I do, which is good. I was soooo messed up this spring.

I hope you can sort out the food intolerances better. I really feel for you with the insomnia. I had it for years and at one point went a week with hardly any sleep during a manic episode. My doctor finally gave me Seroquel, which knocked me out for three days. :lol: Thank heavens I'm past those days. One thing that helps me is fish oil. I take one purified triple-strength capsule a day and it makes a lot of difference in how well I sleep. If I slack on my supplements or fish oil, the insomnia creeps back.

I also used to take a little tryptophan if I had gone a few nights sleeping poorly. Tryptophan works great if I take it once, the second night less well, and by the third night it has no effect for me. Because of the fast tolerance I used to use it maybe once a week as a last resort. Other things I've used with some success are passion flower herb capsules and an alcohol valerian tincture. (Careful with valerian as it's not good for your liver taken long-term.) Maybe these will help while you're figuring things out.

Seroquel made me feel like my whole body was on fire. That was the most horrible experience.

Passion flower herb capsules provided no sleep.

I haven't tried tryptophan. Melatonin doesn't help. My doctor have me samples of a new supplement called Glysom. That didn't help.

Last night I did get some sleep. I always get sleep the third night if I haven't sleeped the two previous ones. Last night it was only my second night. Every once in a while I get some sleep for several nights in a row. I feel I'm on the right track and then it's back to irregularity.

I feel fish may be a culprit but may need to try fish oil again and see if I do any better.

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I think you could eat pork fried rice..made with brown rice and pork, bacon or ham? Don't add the scrambled egg at the end and look for gluten free soy sauce.

Baked kale chips for snacks

http://allrecipes.com/Recipe/baked-kale-chips/detail.aspx

Swiss chard

http://allrecipes.com/recipe/pan-fried-swiss-chard/detail.aspx

Jicama salad

http://allrecipes.com/recipe/jicama-salad-with-cilantro-and-lime/detail.aspx

Snack on Yellow Delicious apples.

I think all of these are on the lentin restricted, low oxylate diet plan?

Anybody else have more idea?

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Just wanted to mention something - Since removing gluten I've tried removing varies food items, both singularly and in groups until I was very frustrated and had little to no improvement. The elimination diet I'm on seemed very difficult, but with the improvements I've had in the past five days I wish I would have known to try it years ago! Right now I'm eating meat, vegies and fruit - definitely looking forward to the challenge period when I get to add some things back...yet if I had to choose the way I felt last week over the way I feel today, I'd choose to stay on what I'm eating right now :)

That being said...I've lived with the fuzzy brain that lack of sleep and pain brings....you must first be good to yourself, taking only the steps you are ready for!

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Skylark,

My TSH was 2.2. A while back I had a full thyroid panel and everything was in the normal limits. A few years before this, I was hypothyroid and taking medication. I didn't feel any better when on medication nor when I no longer needed it. Going gluten free obviously improved both my thyroid and parathyroid. However, I had parathyroid surgery not knowing that a gluten free diet may have corrected it. I'll always wonder if I could have avoided the surgery by being gluten free for a longer time.

Funny, my TSH was 2.2 this spring and I had awful thyroid symptoms. Sounds like you don't have the same sort of brain reaction to low-normal thyroid that I do, which is good. I was soooo messed up this spring.

I hope you can sort out the food intolerances better. I really feel for you with the insomnia. I had it for years and at one point went a week with hardly any sleep during a manic episode. My doctor finally gave me Seroquel, which knocked me out for three days. :lol: Thank heavens I'm past those days. One thing that helps me is fish oil. I take one purified triple-strength capsule a day and it makes a lot of difference in how well I sleep. If I slack on my supplements or fish oil, the insomnia creeps back.

I also used to take a little tryptophan if I had gone a few nights sleeping poorly. Tryptophan works great if I take it once, the second night less well, and by the third night it has no effect for me. Because of the fast tolerance I used to use it maybe once a week as a last resort. Other things I've used with some success are passion flower herb capsules and an alcohol valerian tincture. (Careful with valerian as it's not good for your liver taken long-term.) Maybe these will help while you're figuring things out.

As far as diet, what is your very short "safe" list? Do you have a safe meat, grain (or potatoes), and some sort of veggie? I went down to rice, lamb, and lettuce for two weeks to find out if food was the source of my GI problems (it was) and then added things back a few days apart.

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As far as diet, what is your very short "safe" list? Do you have a safe meat, grain (or potatoes), and some sort of veggie? I went down to rice, lamb, and lettuce for two weeks to find out if food was the source of my GI problems (it was) and then added things back a few days apart.

Skylark,

Safe meats are lamb, beef liver, pheasant, quail and venison. I cannot stand the taste of lamb. I question beef liver since beef showed up as an intolerance. I tried venison and got D from that so figured that got CC from the butchering. Pheasant and quail aren't available. I question seafood since so many kinds showed up as intolerances. My doctor advised me to avoid it because of that. White potatoes are supposedly acceptable but I've been avoiding them because of candida. Green beans area acceptable but I really think they cause insomnia. Same with blueberries. Quinoa is acceptable but last time I ate that it was a problem.

For now I'm hoping the Nystatin will bring me some relief. I'll try to stick as close to the candida diet as possible. My main problem is finding enough calories to keep me from losing weight. I managed to gain about 10 pounds but that has dropped because of limiting my food choices again.

I've been eating brown rice as a filler. I gave that up for a while about a year ago and didn't feel any better when I brought it back into my diet. I'm still eating chicken and not sure if that a problem as it is on my mild intolerance list.

It is really a struggle trying to find foods that are affordable. We have a huge garden and it is so frustrating giving the food away because I'm not sure if I'm reacting to it. Right now we have cucumbers, tomatoes, onions, broccoli, green beans, zucchini and potatoes. I've was eating all of them until I got the results of my past food sensitivity test.

Eggs, dairy (casein) and soy all seem to be problems. I was eating mayonaise for a while and it was so delicious. I actually crave it!

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Oh, one more thing. Some people think that oxalic acid/oxalates in the diet can cause or contribute to leaky gut. I have been doing the Low Oxalate Diet for a few months now, and I think that is one reason my food allergies are becoming less severe. See http://lowoxalate.info/index.html

L_C

I have been checking so many different diets and got oxalates mixed up with histamines. It has been suggested that histamines may be a problem, too.

Am I correct that I can still eat walnuts on the oxylate diet? How about sunflower seeds? I tried doing a spreadsheet of different diets-histamine, oxylate, salycilates and lectins. I may have gotten some of the foods into the wrong columns.

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Oh, one more thing. Some people think that oxalic acid/oxalates in the diet can cause or contribute to leaky gut. I have been doing the Low Oxalate Diet for a few months now, and I think that is one reason my food allergies are becoming less severe. See http://lowoxalate.info/index.html

L_C

How long did it take you to feel better after starting the Low Oxalate Diet? A couple foods stuck out that I should be avoiding. Green beans seem to cause insomnia. I also question blueberries. These are two foods that tested safe. I started eating peanut butter and almonds almost every day for the calories. If I cut out those four foods, I'll be oxalate free.

This will be my first try before eliminating histamines, lectins or salycilates. I can incorporate that into my diet low in foods that breed candida.

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On the mayonnaise issue, Earth's Balance Mindful Mayo and follow Your Heart Vegenaise Soy Free are both gluten, soy, dairy, and egg free. I think they both taste good personally, but require refrigeration, so it's hard to stock up.

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On the mayonnaise issue, Earth's Balance Mindful Mayo and follow Your Heart Vegenaise Soy Free are both gluten, soy, dairy, and egg free. I think they both taste good personally, but require refrigeration, so it's hard to stock up.

I didn't think any mayonaise was egg free. I'll have to check this out.

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There is also an online mayo recipe by Cybele Pascale based on rice milk. It uses xanthan gum to thicken. I didn't care for it, but it's worth a shot. You could use any milk alternative. For me, the garlic should have been omitted and the salt halved, which are easily fixable. There are lots of other vegan mayo alternatives, but they are nut-based, which seemed like a ton of work.

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My own experience had some similarities - not necessarily the same, obviously, because this sort of thing can be from so many things, but for what it's worth...

I turned out to have:

- a few food allergies

- a hypersensitivity to gluten

- problems with a few pesticides

I was keeping a food journal too, but it only found a few connections. I was still sick with pretty much everything I ate. Lots of brain fog, vertigo, insomnia and light sleeping, loads of fun stuff. Eliminating some foods made my D go away (which turned out to be from food allergies, rather than gluten, actually).

But it wasn't until I started REALLY investigating my food supply that I finally started to get better. I react to low enough levels of gluten (and a couple allergies, I'm beginning to suspect) that if there are gluten grains in a compost or mulch for my veggies, I can react. I reacted to the corn derived product in all iodized salt (it stabilizes the iodine). I reacted to a contamination on the line that made my oil. I reacted to coatings and sprays used on my fruits and veggies. Reacted to gluten cc of animal meat at the butcher shop or during processing.

I reacted to so much, all the time, that it was impossible to pin down for a long time.

Now, however, I buy food from a farmer's market. I interview all my farmers to check if they use pesticides, if they use sprays or coatings, if they wash the produce with soap(the good answer is NO). If they have gluten based feed for animals that are allowed to walk around the produce. If they cover any produce with gluten contaminated straw (common with strawberries and mushrooms).

When I find food that is as clean as I can find it, and then wash it myself with gluten-free soap, I can usually eat it now. Almost all the foods I reacted to every single time have turned out to be a coating or spray that is commonly used on these, instead. Or a pesticide, or a soap, that sort of thing.

One way to check if this might be an issue for you, as opposed to a histamine-type issue, would be to grow some of this yourself. If you grow it without any fertilizer/manure/pesticides, and you get sick, you'll know that it's something inherent to the food itself - whether that's something like a histamine or the plant's protein. If you grow it at home and can eat it just fine, then you'll know that you are reacting to something contaminating it, like a pesticide or allergen or gluten.

It's been a good way for me to double check a few of my big reaction foods, like strawberries. Home grown strawberries are perfectly fine for me. But store bought strawberries make me really, really sick, organic and conventional both. There is a pesticide used with them that makes me sick and headachy with conventional ones, and the organic ones that more often seem to use straw, I get the gluten reaction.

I know this is not a short term fix idea, but it might be worth checking on. For me, my headaches and brain fog go away when I'm very careful like this. I was unable to take supplements and medication too, for corn reasons. I tried for a few days, but it makes me so sick now I can't take it. So I am certain I am vitamin deficient a bit now, still working toward a nutritionally complete diet with the help of a nutritionist. But right now, that's better than how bad I felt with all the vitamins and bad foods, honestly.

Oh, and have you checked your water supply? I've met a few people who have had issues with ingredients in their filters, and a couple more who ended up having issues with bleach, of all things. They have to get special water where no bleach is added.

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