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At A Loss For Recovery - Guidance Needed


Syl

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Syl Rookie

Hello everyone! Thank you to anyone who takes the time to read this post and form a response. I frequent these forums a lot myself and it is rather overwhelming how much information is gathered here, but so very difficult to be active on here with life's way of keeping us busy. A big thanks to all the contributors to this forum and website that make it great! Now, on with the show...

I'm posting today because I'm currently at a loss on how to get through the rough patch of the healing stage and on to clearing up the majority of my symptoms. I was diagnosed with Celiacs in June of 2010 by blood testing and a confirmation endoscopy in October of 2010. My gluten free journey had begun in June, and had suffered greatly for a few years prior from chronic fatigue and diarrhea (still suffering this one.) After the first 2 months of gluten free diet I wasn't recovering and took the ELISA panel. Through this I discovered I am also lactose intolerant, with an intolerance to soy, egg, and various others. I have trial and errored these foods time and time again to discover I truly cannot tolerate them :(

I've come a long way from what I once knew about living gluten free and I eat so much better then I did in the beginning - but I'm still losing the good fight. I've lost considerable amounts of weight since going gluten free (30 pounds in less then a year) and I don't know how to stop it. I am male of 24 years of age, 5 foot 9 inches and now weigh 123 pounds. As a result my waistline has shrunk a lot (most would like that huh?) and I've become rather bony as a result. My diet has mainly consisted of whole foods (produce cooked from scratch), whole grains like quinoa, brown rice, and plenty of legumes. I eat fish three times a week and consume grass fed beef usually no more then once a week, but I do eat a lot of bacon. I blame Applegate for that one. I've also recently stopped consuming corn to see if that is causing a problem as it's one item I've never eliminated.

To get to the meat of the post - I'm still suffering a plethora of problems, especially malabsorbtion, and I don't know why. My current symptoms are chronic diarrhea, bloating, and the latest development as of a month ago - dry skin on hands that leads to cracking and bleeding, trouble breathing with exertion and after eating large meals, and neuropathic pains. These range from physical pain in my head to headaches after eating and all sorts of numbness and tingling throughout extremities. This one is the hardest for me to explain. On a positive note I have defeated chronic fatigue for the most part thanks to my multi vitamin, and recent testing done showed my C-Reactive Protein has gone down by half as well as my IGA antibodies. Something is going right, but something else is still very wrong ;D The only real studies I've had done within the last 8 months are complete blood counts as it's all I could afford. My white blood cell count has been abnormally low since I was diagnosed, and when my endoscopy was performed they found a large amount of white blood cells in my esophagus (along with a small hiatal hernia.)

Getting to the present - I was recently put on a high fat diet as of 2 weeks ago by a gluten free registered nurse I consulted with in town (I have no health insurance) and haven't had much success yet. I'm eating as many healthy fats as I can, especially coconut in all forms (milk, yogurt, in baking, etc), olive oil on everything, different nut butters like cashew and peanut, and a lot of bacon. I seem to have nothing but bloating and what looks to be belly fat since starting it tho. She also recommended Rifaximin for 5 days to attempt to remove any possible small bowel overgrowth. Unfortunately I have finished the script with no noticeable difference and still have to address the possibility of a Candida overgrowth.

Bottom line is - I feel like I'm getting worse and don't know what I should be doing to combat it. I'm desperate for any good advice or feedback on how to fight the malabsorbtion, regain the weight, and beat the symptoms as I cannot do it on my own. There is a wonderful community here and I've attempted to probe information out of it, but each of our situations are unique so it's really hard to understand what way to go about it. I am a sponge ready to absorb, and any information will be taken to heart as that is all I crave! I am incredible optimistic no matter what happens to my health as I've got a great support group and truly enjoy living gluten free, but as I stated in the topic I'm in serious need of further guidance from the veterans of the lifestyle.

A big thanks to anyone who could trump through this wall of text, it's greatly appreciated.

A list of my current supplements below:

Country Life Liquid Multi-vitamin: Taken twice daily, once with breakfast and once with dinner.

Country Life Liquid Calcium: Half cap in the morning, too much added diarrhea otherwise.

Country Life Power-Dophilus: A probiotic with 4 types of healthy bacteria - Taken twice daily with food.

Flax Seed Oil: 1 TBS at night with dinner.

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mushroom Proficient

Hello, and welcome, lurker :D It's always good when one of our shadows comes into the open. :)

Now, how to start to help you. The first step for me would be to know what nutrients you are deficient in, because if you have major deficiencies a multivitamin is not going to cure them - those actually contain only maintenance doses for someone who is not absorbing nutrients properly (by definition, someone who has constant diarrhea). My doctor likened it to an empty gas tank - you find a gas station, put in one gallon of gas, and you have barely enough to get you to the next gas station. You are always running on empty :unsure: The first thing you have to do is fill the tank, and then keep it topped up so you keep running at maximum efficiency. For those with malabsorption caused by gluten, we tend to be deficient in Vitamins D and B12, specifically; often also folate (B9), A, E and K. Then there are the minerals; common deficiencies are iron, zinc, magnesium. (I am not giving you an exhaustive list here) If you can't afford them all, I would at least do D, B12 and iron - these are the ones that most often require prescription strength supplementation if you have severe deficiency. The rest you can probably pump up with good quality OTC supplements.

Next, we have to deal with digestion. It's good that you are taking probiotics to promote healthy flora in the gut. But until those take hold and your gut starts to heal, you probably still need some digestive help. Many of us find that digestive enzymes are an essential supplement because gluten seems to send the pancreas on vacation :rolleyes: and so we have food sitting in the stomach and small intestine not being digested, due to lack of enzyme production by the pancreas, causing bloating and gas and diarrhea.

So until you get these issues sorted, and get some healing in the gut (many of our posters find L-glutamine helps with this) you have what we call leaky gut syndrome, caused by gluten, which lets partially digested food molecules into the bloodstream and sets off an autoimmune reaction in the body because your body does not recognize them in the undigested state. It says, oh-oh, foreign invader and makes antibodies to these other partially digested foods and then you become intolerant of them too :( So now, instead of only gluten, you have several foods that your body is reacting to, and the longer your gut remains unhealed, and the greater the quantity you consume of these other foods that are not being properly digested, the more intolerances you develop and the worse you feel.

So what to do?? Do get your D, B12 and iron levels checked, at a minimum, because your body won't function properly without these being at a good level.

Continue with your probiotic.

Maybe supplement with L-glutamine.

Go back to a very basic diet that your body accepts. Try meat, white fish, steamed veggies, fruits (no raw skins), rice nuts, seeds. All whole foods, nothing processed, especially nothing gluten free processed because these contain other grains your body may not be used to. Once you find a (yes it will be bland) diet that your body accepts, then you can start adding in other things. Don't start adding in the top 8 allergens like corn, peanuts, etc. Add in things you think you body will tolerate. It is important to keep a food and symptom diary here to see what effects the foods are having. Give each food three days before adding something else. Ditch anything that causes problems and put it on a six-month challenge list. Continue adding new foods as tolerated. I know, I know, it's a PIA, but you do want to get better, right???

Now, if you cannot find any diet your body can tolerate, then you probably need to do some stool testing to find out if you have candida, parasites, other infections like c.diff, etc., that are preventing you from healing.

So this is basic 101, first semester. Fire away with any questions you have. And hopefully others can offer some additional advice. :)

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GFinDC Veteran

Well a couple things to consider.

Have you had your thyroid levels checked? You might be hyper-thyroid. You are eating a lot of fish, and if it is seafood you might be getting too much iodine. You might also be getting too much mercury. The gov reccomends certain types of seafood be eaten no more than twice a week due to mercury levels.

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dilettantesteph Collaborator

One thing that you could consider is that you may be a super sensitive celiac. There is a section in this forum for super sensitive celiacs and other info available. You may be reacting to minor amounts of cc in your foods.

Are you eating farmed fish? That can be a problem for a super sensitive. They can be fed gluten containing foods. I have gotten sick from (wild caught) seafood obtained directly from the counter. Since then I have them get it for me directly from their shipping package using fresh gloves etc. That way I haven't gotten sick. Is your meat cut up in the store? My store told me that cc was a possibility if the meat is cut up there. I get the larger packages packaged at the meat processor. I still wash them before cooking.

Olive oil adulteration has been a problem. Open Original Shared Link

For us it is a big problem if it is adulterated with something containing gluten. I had problems with some olive oils. I boiled everything for awhile and then tried different olive oils until I could find one to which I didn't react.

Some of your other products might have cc issues. It is helpful to keep a food/symptom journal, and to only add one new food a week.

I hope you get this figured out. It is kind of scary to lose weight because you wonder how much further it can go. I've been there.

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joej1 Apprentice

Yea i hear ya, I am actually a 24 year old male also and had similar problems. Getting off gluten is definately the first step but it seems that so many people on here just go off gluten and hope for the best. I am working with a functional medicine practitioner who uses lab tests to figure out what is going on. You could have parasites or bacteria overgrowth/candida. You could have a peanut/legume allergy. You could need to detox. Working with these people and getting some testing done is sometimes the only good way to figure this out and get you out of the dark.

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Takala Enthusiast

I am more to the thinking that you are either unwittingly still get cross contaminated with something, OR, you have an additional food problem. You're eating 2 things that are commonly recommended to celiacs and gluten intolerants that the majority can have with no problem but which will do me in, (and it took me a good long while to figure this out) one is flax seed oil, the other is cashew butter.

Some people react poorly to quinoa.

Are you draining and rinsing your beans/legumes well ? The starch from them is really hard to digest.

You could also be reacting to xanthan or guar gums, or something like tapioca.

Recently at our house we have been having The Tomato Products Problem, as a lot of manufacturers are adding mystery ingredients, aka "natural flavorings" and other things to add texture which one doesn't need in a plain tomato sauce or whatnot. My spouse, trying to be helpful, will pick up varieties more likely to have this in it, I have several times told him Do Not Buy Something Unknown with a so- called "organic" label and gluten free, as the labeling standards in this country currently don't have to adhere to anything much to say "gluten free." And I've noticed the organic types of products are worse for this little faux pas.

He came home last night with a replacement tomato product, same thing, not a brand I'd ever heard of, labeled organic, gluten free, and definitely, from what I explained to him, containing some sort of unspecified grain product from how I interpreted the label. So unless I want to play Guinea Pig again, he just wasted $5 bucks, because it was grotesquely overpriced, too. Why should I care this is extra special with agave sweetener in it, I don't give a **** ****, what is in the other ingredients. This was to replace the previous tomato product that got me. And now he's slightly in a snit I have rejected the 2nd Fancier Tomato Product.

I am not going to pull my hair out and scream, but some days I get a bit closer to it than others. But the funny part was he also had gotten a bottle of regular Brand Name, which has a tiny gluten free tick off on the back label now, that I've eaten for years so far without a problem, as a back up. When I compared ingredients, the regular Brand Name has far fewer. This means there is less chance for them to Screw It Up.

My philosophy is always stick with foods that have the fewest ingredients, I also am suspicious of any sort of supplement that is allegedly going to "help" me after reading about so many people taking this, that, and the other thing for digestion and yet still having problems.

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Syl Rookie

Oh my, what a wonderful welcome! I really didn't expect such amazing insight in just one night - thank you all so much for your time and knowledge. I'm truly at a loss for words :]

Mushroom,

Thank you for the great information! Your doctor's anecdote on deficiency is quite humorous and rather insightful, thanks for sharing. The only time I ever had any vitamin levels tested was in June when looking for what was causing my symptoms, and looking over the records it was only Vitamin D (which was fine), but it has been a long time after all. I will get in touch with my doctor today and look into testing the minimum you've recommended first as it's rather pricey out of pocket, but it should be a great start :) Just to clarify what you said about the Multi tho - taking it twice daily isn't good enough to bring me back up to speed over time? If you could elaborate on that I'd appreciate it. I had normally only taken it once daily, but after meeting with the Gluten Free R.N. I was increased to twice and assured that the vitamin levels would get back up there. I'll also be sure to look into an enzyme that I can take to wake my pancreas out of his coma ;]

As far as L-Glutamine goes the original doctor who diagnosed me (whom I am no longer able to see) did recommend a supplement Intestinal Repair Capsules that had L-Glutamine, but I stopped taking it many months ago because I found out about my Soy allergy. Is there a specific company that is good to look to for this supplement? I have seen the Comprehensive Gut Health by Pioneer in my local co-op and was wondering if this would be a worthwhile investment. It contains a few other elements like Quercetin and seems like a good one, but as you more than likely know supplementation costs us a lot each month. As a college student I like to buy what fellow celiac's have tested and verified for better results and a happier wallet.

As far as diet goes - yikes! :D I always knew I should start something similar, like the BRAT diet and then slowly add things back, but I guess I've been far too stubborn. That and the fact that all my meals are cooked together for my girlfriend and I. You gotta do what you gotta do, eh? I will take on this new diet challenge and go from there, thank you! I do keep a food journal tho to make sure I'm intaking enough calories, but I will be sure to mark what is a problem once I start ;]

Thank you again Mushroom, your knowledge will be sacred to me.

GFinDC,

Thank you for the suggestion. I have actually had my thyroid levels checked a few times throughout this all and they have been perfectly normal :) I understand the mercury concern for sure, and I try to buy from Wild Planet when I consume fish as they are quite a good company, but I will make sure I limit the canned fishies. I live in Oregon and am blessed with an amazing food system here with local produce and great health food stores so it won't be too hard to find a new option!

dilettantesteph,

Thank you for your concern. I am indeed a super sensitive celiac, that much I can verify. I am rather easily contaminated via cross contamination :( My girlfriend whom I've lived with for 2 years now has always been a gluten eater, and only recently has she decided to come off it for her own health issues and for my sake. I am very diligent in the home about making sure I'm not being contaminated, but honestly I feel more days then not I am glutened somehow, someway >_<

I have indeed gotten sick from the very same, be it fish or meat. I used to buy hormone free meat as I've long since sworn off the conventional way of raising animals, but I now know I need to stick with purely grass fed as I've been plagued too by the animals diet or those who package them.

I learned about the Olive oil thing a long time ago, but I sure didn't think twice about it having gluten! That is rather upsetting to hear :( Any chance you know of some reputable Olive Oil distributors? We consume Olive oil daily in my household and normally buy from a different brand each week, always extra virgin (even tho it may not be just that, wah!)

I'm sorry to hear you've had similar experiences with the weight loss, and it sure is alarming, but I feel so much more confident when I hear from others who've battled through similar situations. Thank you for your insight!

joej1,

Thank you for your input! I'm always sad to see so many of the younger crowd going through this, but it really does strengthen my power of will to fight the disease knowing others like yourself are overcoming it. I am concerned there may be a candida overgrowth, but for now my funds are limited and my health insurance non-existent. I work with a sliding scale doctor tho and can get something like a stool test done for parasites. I did have this done when I was first diagnosed, but perhaps I should do it again. Thanks again!

Takala,

Thank you very much for your advice! I do believe I am indeed getting contaminated by something almost daily, and I'd have to agree that there is something still in my diet like possibly the nut family that I've never taken out to really find out. I will be sure to start the diet Mushroom recommended and go from there :]

I'm very sorry to hear about the tomato issue, I know what you mean! The fact that they can list "natural flavorings" or "spices" without letting us known what is actually in it has also gotten me glutened a few times. Have you ever tried Muir Glen for tomato sauce? This brand I've been using for over a month now and they are simply hands down the best on flavor and quality that we've found yet! Look into it some time if it's sold in your part of town :]

Couldn't agree more with your philosophy tho, the less ingredients the safer we are! Thank you for your insight.

And a big thanks again to all of your contributions - this is something I've wanted to do for a long time now and I look forward to making changes and overcoming this period in my life. Even tho I'm not winning the fight for now I'm certainly a happier person by being a celiac thanks to the wonderful people I've met along the way and the fact that it's brought me more joy then sorrow. I never would have become such a great cook (or cooked at all, I lived the processed life) or have such a great perspective on life without it. Thanks for giving me more hope :D

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GFinDC Veteran

I knew I was forgetting something Syl. It sounds to me like your friend has you following the ketagenic diet. It can use a lot of coconut oil. The thing is, some people have a pretty intense D reaction to coconut. So, maybe you could do some other oil for a change and see if it changes anything. We are all still learning how to eat right.. :D The ketagenic diet is used for several conditions, so it is an interesting option to try.

Open Original Shared Link

The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.[1]

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mushroom Proficient

Just to clarify what you said about the Multi tho - taking it twice daily isn't good enough to bring me back up to speed over time? If you could elaborate on that I'd appreciate it. I had normally only taken it once daily, but after meeting with the Gluten Free R.N. I was increased to twice and assured that the vitamin levels would get back up there.

For most nutrients the multi twice a day should work well; for those you are particularly deficient in (if any) it probably won't. If you are very low in D you have to do the filling the tank process and then revert to maintenance. For iron, infusions are sometimes required. For B12, sublinguals or shots are often necessary. This is because we have damaged our small intestine and do not absorb things properly through the intestinal lining by definition. So we have to find ways of compensating for this. :)

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Syl Rookie

For most nutrients the multi twice a day should work well; for those you are particularly deficient in (if any) it probably won't. If you are very low in D you have to do the filling the tank process and then revert to maintenance. For iron, infusions are sometimes required. For B12, sublinguals or shots are often necessary. This is because we have damaged our small intestine and do not absorb things properly through the intestinal lining by definition. So we have to find ways of compensating for this. :)

GFinDC,

Very interesting, she didn't explain to me that side of it. Thank you for the information, it is a good read. I haven't noticed increased bowel issues because of coconut specifically tho, I seem to tolerate it in its many forms very well. I believe how she explained it to me was that because I don't have enough fat stored I'm not absorbing my multi vitamins and is a large reason why it just comes out the other end, hehe. My issue with this diet thus far is a very slow digestion tho - I seem to digest fats very slowly and like Mushroom said, have food sit around like it's on the dry cycle. I'm 124 pounds but after eating throughout the day look to be expecting a baby in less than a month >_> Hopefully Digestive Enzyme will aid me on that one!

Mushroom,

Thank you so much for explaining that, well understood. I have made a call to the doctor to start some vitamin level testing and have ordered vitamins D, B12, Iron, and Vitamin E. The fact that my cracked skin on my hands isn't healing, shortness of breath, and the nerve issues leads me to believe the body is craving more Vitamin E. Thank you again for pointing these things out, it's really great to have that extra push to motivate me in going beyond the doctors orders and taking my health into my own hands all together. Much appreciated :) I will be nabbing an enzyme and another supplement with Glutamine today and after the weekend, the new diet. I feel that better healing is finally within my grasp!

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eatmeat4good Enthusiast

I love all the information you got. I can't improve on it. I just want to throw SIBO infection out there. If you have it, it is easily treated by antibiotics so just keep it in mind in case.

Hmmm I might go keto.... ;)

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Syl Rookie

I love all the information you got. I can't improve on it. I just want to throw SIBO infection out there. If you have it, it is easily treated by antibiotics so just keep it in mind in case.

Hmmm I might go keto.... ;)

eatmeat4good,

I too am overwhelmed by the incredible insight provided by the wonderful members of this community :] I've sprung into action and take everyone's advice to heart. It means the world to me to get my health back on track and it is always inspirational to read the stories of our fellow celiac's.

Thank you for mentioning the Small bowel infection! This is something that was discussed 2 weeks ago with the Gluten Free R.N. I met with and I did indeed have my doctor prescribe Rifaximin for me. I took it for 5 days, 3 times each day, and it didn't seem to help me any. Great suggestion tho, thank you for your input!

The coconut, it is delicious. Come to the coconutty side :D I very much so enjoy the idea of being able to eat all the fat I want, but without digestion working it sure isn't as fun as I'd hoped hehe.

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GFinDC Veteran

Some digestive enzymes might help with the digestion. Or some Betaine HCL a half hour before eating it.

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Syl Rookie

GFinDC,

That is the hope and goal in mind :] I am currently planning on buying Digest Gold as it seems to be one of the most complete ones for digestion, just searching for a good price! I look forward to giving them a try tho as better digestion would more than likely help in many ways.

Didn't know about the Betaine tho, I'll look into it before buying Digest Gold. After reading a bit about it perhaps that might be better to re-train the stomach to produce enough acid instead. Thanks for the information!

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  • 2 weeks later...
Syl Rookie

It's been a week on trying to avoid the top 8 allergens and a more simplified diet, started on digest enzymes, continued use of probiotics, and got confirmation that my B12 is good, but I'm still struggling. It seems with almost every day that goes by I'm consuming something I shouldn't and it's driving me insane :( I've been very patient with the diet, but over the weekend I nearly hit a breaking point with how frustrating it is to eat something you make from scratch only to have stomach pains, indigestion, and delayed reactions like fatigue. I just don't understand what I can do better to weed out allergens as I feel cross contamination is somehow beating me as well.

I attempted to eat only lean meat like chicken with simple grains such as brown rice and quinoa, with steamed or sauteed veggies. The chicken was vegetarian, cage free from the co-op but it was fed a Soy and corn diet, and I seemed to have a bad reaction every time I ate it. Outside of that I don't know what else to buy that's safe for consumption. I literally haven't eaten any meal that hasn't caused some sort of problem lately, and I'm very careful with what I eat! I continue to look pregnant even tho I'm 123 pounds, and I'm just flabbergasted. I've kept a food diary and so far can only discern that perhaps I have an undetected Nightshade allergy since I use Onions in many meals, but when I cut them out I still have problems.

Does anyone have a specific, set in stone diet that I could try for 5 days to clear all allergens from my system and go from there? At this point I'm just in severe need of more guidance as even my own doctor went against my wishes. Mushroom recommended the vitamin levels checked and in turn I asked for Vitamins A, E, D, B12, and Iron, only to have my doctor instead test me for Complete Blood Count (something I've been doing almost every 2 months with him) and just B12. I got the call on Friday with results and have been confused since as to why he didn't do what his patient requested, making me pay out of pocket for yet another CBC that I didn't want. I don't mean to come off as whiny as I am a very strong willed, optimistic person, but the fact that I am in the bathroom more then one should be and constantly fighting off ill feelings is driving me insane when I know food is the problem, haha.

Also, any information on proper testing for Candida Overgrowth if anyone knows. I'm absolutely convinced that I have an overgrowth as I had to cut out any yeast consumption at all due to really bad fatigue when consuming. Starchy foods like potatoes seem to make things worse as well, and too much sugar. Its as if I'm just feeding the problem, like I've read many other places, but starting a Candida Albican overgrowth diet seems rather complicated, not to mention the supplemental costs that I cannot afford :(

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cahill Collaborator

It's been a week on trying to avoid the top 8 allergens and a more simplified diet, started on digest enzymes, continued use of probiotics, and got confirmation that my B12 is good, but I'm still struggling. It seems with almost every day that goes by I'm consuming something I shouldn't and it's driving me insane :( I've been very patient with the diet, but over the weekend I nearly hit a breaking point with how frustrating it is to eat something you make from scratch only to have stomach pains, indigestion, and delayed reactions like fatigue. I just don't understand what I can do better to weed out allergens as I feel cross contamination is somehow beating me as well.

I attempted to eat only lean meat like chicken with simple grains such as brown rice and quinoa, with steamed or sauteed veggies. The chicken was vegetarian, cage free from the co-op but it was fed a Soy and corn diet, and I seemed to have a bad reaction every time I ate it. Outside of that I don't know what else to buy that's safe for consumption. I literally haven't eaten any meal that hasn't caused some sort of problem lately, and I'm very careful with what I eat! I continue to look pregnant even tho I'm 123 pounds, and I'm just flabbergasted. I've kept a food diary and so far can only discern that perhaps I have an undetected Nightshade allergy since I use Onions in many meals, but when I cut them out I still have problems.

Does anyone have a specific, set in stone diet that I could try for 5 days to clear all allergens from my system and go from there? At this point I'm just in severe need of more guidance as even my own doctor went against my wishes. Mushroom recommended the vitamin levels checked and in turn I asked for Vitamins A, E, D, B12, and Iron, only to have my doctor instead test me for Complete Blood Count (something I've been doing almost every 2 months with him) and just B12. I got the call on Friday with results and have been confused since as to why he didn't do what his patient requested, making me pay out of pocket for yet another CBC that I didn't want. I don't mean to come off as whiny as I am a very strong willed, optimistic person, but the fact that I am in the bathroom more then one should be and constantly fighting off ill feelings is driving me insane when I know food is the problem, haha.

Also, any information on proper testing for Candida Overgrowth if anyone knows. I'm absolutely convinced that I have an overgrowth as I had to cut out any yeast consumption at all due to really bad fatigue when consuming. Starchy foods like potatoes seem to make things worse as well, and too much sugar. Its as if I'm just feeding the problem, like I've read many other places, but starting a Candida Albican overgrowth diet seems rather complicated, not to mention the supplemental costs that I cannot afford :(

First of all, it has only been a week. It will/may take longer than that to clear out reactions you have had.Try to be patient with your self and your body.

As to a diet set in stone , there is not any one thing that works for all of us. We are all different and have different issues and intolerances ( the exception being gluten ,of course)

I did an elimination diet which was a eye opening experience for me.I was able to pinpoint remaining intolerances and a couple of true allergys.Even that is not set in stone. I had a couple false starts before I found the combination that worked for me.

What worked for me was choosing foods that I normally did not eat.

My five foods were ground lamb,sweet potatoes,peas,peaches and white rice. and water, NOTHING else for at least 4 weeks. Tough is the not word :P but it worked. I very very slowly started adding foods back one food at a time and nothing else new for at least a week (two weeks was better). You may not have to go to that extrem , cutting out precessed foods is a great place to start .

((HUGS)) hope you find what works for you soon :)

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GFinDC Veteran

...

Also, any information on proper testing for Candida Overgrowth if anyone knows. I'm absolutely convinced that I have an overgrowth as I had to cut out any yeast consumption at all due to really bad fatigue when consuming. Starchy foods like potatoes seem to make things worse as well, and too much sugar. Its as if I'm just feeding the problem, like I've read many other places, but starting a Candida Albican overgrowth diet seems rather complicated, not to mention the supplemental costs that I cannot afford :(

I just know they generally recommend avoiding all sugar and starch for candida. I'd add to that avoiding food colorings and preservatives too.

Just thinking, have you been checked for H.Pylori? H.pylori can cause plenty of symptoms, including lowering stomach acid. That might make it harder to digest the fats.

An elimination diet is a good idea also. The thing is, we all have our own personal digestive tracts (notice I refrained from saying demons :) ), and they don't come with a guaranteed generic set of problems. So we have to figure out our own individual food intolerances. An elimination diet can help with that process. The PP gave good advice on it. Start with 5 foods that you believe work for you. Stick with them a couple weeks. If you get better, start adding one food at a time. If you don't start taking away one food at a time. Substituting a different food to replace the one removed. Think about choosing foods according to families, like nightshades. If you eliminate a nightshade don't replace it with another nightshade. Try something different. Maybe a fruit. Its a slow process but it can help.

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sreese68 Enthusiast

Not much to add except that you may want to eat white rice instead of brown. Brown rice gives me terrible stomach pain, and I know it bothers a good number of people who malabsorb fructose (though why it does, I have no idea since it doesn't contain fructose!).

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em26 Newbie

Syl,

You should consider the possibility that you are cross reacting to all Gramineae.

My bowel only started to feel like it's healing after I quit all grains, and my DH rash also calmed down soon after, so I know that corn and rice weren't just another food intolerance for me (like soy). My body is reacting to corn and rice (even the certified gluten free products) the same way that it does to gluten.

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dilettantesteph Collaborator

Or, it could be that you are reacting to low levels of gluten cc in these foods. You can test that by buying them whole grain, washing carefully and see if you still react. If you react less after washing, then it might be cc rather than cross reactivity. That is what I found to be the case for me. I can still eat corn on the cob from a few select farmers, though I can't eat processed corn products. Rice I also react to a lot less if I wash it carefully.

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Syl Rookie

Thank you all for your generous input. It puts a great big goofy smile on my face to read all of your personal experiences, and honestly, makes me feel pathetic! I don't think I've had it nearly as rough as some of you have, and I thank you for keeping me on track with great advice and encouragement!

a1956chill,

I will be more patient, thank you! I guess I was just hoping for an easier way out :P I have my days when I love cooking and coming up with something inventive to eat, and I have those that frustrate me like today where there isn't enough time in the busy day to have to cook everything from scratch, but perseverance will drive me forward! I believe I do need to try a little better with the diet, as the other night I prepared a simple Quinoa, red onion, carrot, olive oil, and Applegate turkey bacon stir fry and found myself reacting poorly to something, but couldn't determine what. That diet of yours sounds extremely painful to stick with, but I commend you for finding what works for you - I will find what works for me. Thanks again!

GFinDC ,

Thanks for your continued input! I do ensure I avoid all food colorings, preservatives, and generally anything I don't know, but great advice none the less. I was checked for H Pylori when I had my Endoscopy back in October and I was negative so I don't think it has developed in this short span, but who knows. I will strive harder for a more solid elimination diet.

sreese68,

And here I went and just bought Brown rice hot cereal from bobs red mill, damn ;p I've yet to have trouble with brown rice specifically, but I have indeed had trouble with Kasha, or rather Buckwheat groats. Not the creamed cereal tho. Weird. Thank you for the tip, I'll see if there is a difference for me!

em26,

Very interesting theory. Perhaps you may be right. I did think maybe I reacted to my Quinoa the other night, but I found it odd as I tolerated it fine in the past. I have suspected buckwheat as well even tho it was gluten free. I will test this further, thank you so much for the insight!

dilettantesteph,

I wouldn't be surprised if you were right! I have found myself to be extremely sensitive, so much so that if my girlfriend ate something with gluten and I kissed her hours later I'd still get glutened. I will take on this challenge and see how it works out!

Thanks again to everyone who contributed, I'm so grateful for all your help! I just started a new supplement today called Pioneer Nutritional Celiac Support which has L-Glutamine, Licorice root, Quercitin, and a few other goodies so I'm hoping with this, the enzymes (even got Bromelain and Papain to add to Digest from Enzymedica) and probiotics I'll have better luck with digestion and overall health!

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Glutinator Girl Rookie

This is my first post but I have been reading everything for a while now! I really feel for you it can be so frustrating but the body does take along time to heal. I know for me sugars and yeast are a big problem with me and I saw a huge diff when I eliminated these, also I noticed you said you ate alot of bacon, I'm not sure where your from but over here bacon may not be gluten free, just a thought on something to check out.

Remember make a big deal out of the little victories and dont dwell on the setbacks.

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cahill Collaborator

a1956chill,

I will be more patient, thank you! I guess I was just hoping for an easier way out :P I have my days when I love cooking and coming up with something inventive to eat, and I have those that frustrate me like today where there isn't enough time in the busy day to have to cook everything from scratch, but perseverance will drive me forward! I believe I do need to try a little better with the diet, as the other night I prepared a simple Quinoa, red onion, carrot, olive oil, and Applegate turkey bacon stir fry and found myself reacting poorly to something, but couldn't determine what. That diet of yours sounds extremely painful to stick with, but I commend you for finding what works for you - I will find what works for me. Thanks again!

I have over the last 5 months slowly add foods back to my diet, some successes and some painful failures but now I do have quite a few food on my safe foods list.

as to an Easier way out , sorry, there is not one that I have found and believe me I have looked :P:lol:

I also have busy days were it is imposable to take the time to cook everything from scratch,,

what I do is on the days I do have the time to make every thing from scratch ,I make and freeze extras so I always have somethings in the freezer to pull out in a hurry .It has been a life saver.

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mushroom Proficient

When it comes to adding things back in, quinoa might not be the first thing that pops into your nead. Quite a few of us have problems with that grain. Take it easy on the new grains you add because there are a lot of grains that give people problems. For me it is all the gluten grains, corn, quinoa, amaranth. I love buckwheat and sorghum. But for everyone it is different..

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sreese68 Enthusiast

I did think of one thing to add. It take take up to 2 or 3 days for a reaction to set in after you eat a food you don't tolerate. I discovered that two days after I ate brown rice pasta I had bad stomach pain. Waited a little while, then tested brown rice - same reaction and same timeframe. So what you eat right before you feel bad may not be the food that's bothering you.

Oh, and onions also bother people with fructose malabsorption. Might be best to keep them out for awhile. The tops of spring onions are supposed to be safe, though I haven't tried them yet. Not saying you have fructose mal

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