Those With Multiple Reactions Help Please! Overwhelmed And Depressed.

[bekkaz]

Okay - I have a very long story, too long to post all right now.  I have been very sick for the past several months, stomach bloating for as far back as I can remember.  I recently had my gallbladder removed, in Jan. I also started with major stomach acid, this is new.  I had an endoscopy and they found gastric erosion.  No clue really why.  My 2 blood tests (celiac panels) both came back negative, my biopsy also negative.  I have been having chest pains (breast bone area) and throat stuff, feeling like something is stuck in my throat all the time, along with tonsil stones, dizziness and even pass out episodes.  I have treated candida overgrowth twice now, one about a month ago with 2 weeks of Diflucan.  I was skin prick tested to some things, and came back strong positive 4, to Chicken, Corn and Soy.  A 3 to dairy.  Sometimes dairy bothers me, sometimes not at all.  I recently did enterolabs testing and came back positive to gluten, and negative to caesin.  I feel like I am really reacting to so much that my symptoms don't subside and it's overwhelming.  I cannot narrow down everything I feel I am reacting to.  Nor do I know if the tests I have had thus far are really accurate or not?  How can I find out what I am reacting to, what is the worst reactors for me?  I have another Dr. appt with a 4th GI Dr. next week.  I am wondering should I being seeing a GI at this point, or an allergist yet again (3rd time)?  I also went to the ENT who said I have tonsil crypts and stones.  I feel these are happening because of a food reaction, they have been really BAD in the past couple months.  I can't take this anymore please help!  I am also vitamin D deficent and wondering if I have the start of osteoporosis, my spine has started curving and back pain started about 6-8 months ago.  I said to my chiropractor I feel like my spine's curving or something...he said it is!

[1desperateladysaved]

Bekkaz,

 

Sorry you have suffered so.  I can understand the bloating forever thought.

 

You are overwhelmed.  You have started well by asking  questions here.  Do everything you know you must do, such as get rid of gluten in your diet.  It sounds like dairy, chicken and corn also.  Learn what you can from the forum.  There are substitutes you can use.  I use coconut or nut milk instead of dairy for example.  I use almond, coconut, or nut flours rather than wheat flour.  There are many grainless or wheatless recipes on line.  I know you may not be feeling the best, so do what you can.

 

You are able to eat meat, fish, and vegetables, I hope.

 

Nutrient absorption tests may be a good idea for you.  Otherwise take some liquid D3 for vitamin D and other commonly short vitamins.  I think some are listed in Irish Hearts list for Newbies.  You aren't where you are going to be, but you are going there.

 

I wish I could come to help you in your kitchen, but I have a family to take care of here in MN.  I cut out gluten about 10 months back and managed somehow.  Keep going through the depression and overwhelming parts.  Sometimes the hardest days are followed by the best ones yet.

 

Get well***

Diana

[bartfull]

I suggest meat, eggs, veggies, and SWEET POTATOES, all of them organic. My immune system was "in hyperdrive" according to my nutritionist, so she suggested organic and it worked. I was reacting to pesticide and chemical fertilizer residues. The same foods that made me sick when I bought them at the grocery store were fine when I bought the organic versions. I kept it simple though. Meat, eggs, broccoli, cauliflower, and I could do cheese and butter too. That was all I ate for a good six months. I healed. I was able to shop at the grocery store again.

 

If corn bothers you (as it did me, and now does again after a glutening a couple of moths ago), you will have a VERY hard time finding vitamins and supplements, as well as any regular medications that you can take. Almost EVERYTHING has corn in it. That's why I stress the sweet potatoes. They have more nutrition than any other single food. They have kept me alive.

[Takala]

Hon, if it is a gluten reaction, even if you tested "negative," it is going to make you more sensitive to a lot of these other foods.  What you are describing is somewhat mimicking an ongoing inflammation problem of arthritis I have with the connective tissues and my bones, which I control the symptoms of, by eating a strict diet.  It does not "cure" it, but it has kept it from getting worse, and I am one of the few people that I have ever heard of who did not go the heavy- medications route, yet got better instead of worse - my current doctor cannot believe that I can function with some parts of me looking like this.  

 

You will have to go on a limited diet, eating only a few foods out of each group, such as meat, eggs, vegetable, fruit, fat/oil/nuts, and keep a diary of everything that you eat, and see how you react to it, before you add another food in, one at a time.   When and if you take a vitamin and a mineral supplement, make sure it is gluten free.   Yeast overgrowth treatment-  unless you repopulate yourself with "good" bacteria and give them a happy home to live in, they tend to come back with a vengeance. "Nature abhors a vacuum."  So you will be wanting to limit sugars (obviously....), starches from grains, and dairy, because they can be the big drivers of that sort of reaction.  If ever anyone should be taking probiotics, either in natural or from the store form, it is you.  Then eat to feed them.  In the future, you may be able to add a lot of foods back in, once you get the ones you SHOULD'T be eating in your compromised state OUT. 

 

You may also have to turn what you eat at what time of day upside down, eat a non- modern breakfast, and not do cereal products at breakfast, at all....  this means things like nut flour pancakes, or eggs and fish, or coconut milk, once you get the gluten out, you should be able to eat fats again, even if that seems counter- intuitive right now, and you can use fats and proteins for fuel, if you are in a state where you cannot handle the grains, yet. 

 

If you can't stand the thought of cooking certain meals, just cook 4 or 5 servings of eggs or meat at a time and have leftovers, for example, keep hard boiled eggs in the refrigerator with a plate of cooked servings of meat slices, then add vegetables, fruits, and nuts as needed. 

 

Canned pumpkin (be sure it's not processed on wheat lines, as one organic brand from "Whole Paycheck" is) is an extremely versatile food which is just about perfect to be either sweetened and used with coconut milk for breakfast, or savory and used for soups, chile, and stews as a thickener.  Zuchinni can be shredded and used as a pasta substitute.  You don't hear of many squash reactions, so this is another food to try.  Cabbage leaves can make an awesome baked lasagne noodle substitute, altho it sounds like it won't work, it does.  (and there is such a thing as non dairy cheese substitutes, also, if you are in a cheeseless phase). 

 

Re the chicken- when you try that again, try the organic, rinse it well in water before cooking, makes a HUGE difference for some to not be exposed to antibiotics.  This has been a huge game- changer for me, it's easier to take one good, $ not cheap, but safe large organic chicken breast, cook it, and get 4 or more servings out of it when it is put in a safe sauce that I have made from vegetables or organic yogurt and olive oil and/or coconut milk, and serve it with cooked rice or rice noodles, than to risk eating a regular one and having another one of those "what was THAT?" reactions, not gluten, but not feeling right afterwards.  

 

Really, you can do this, you just need to go on a variation of SCD or Paleo for awhile, then you can see what you can really eat, which might be more that you think. 

[sewerplant]

Okay - I have a very long story, too long to post all right now.  I have been very sick for the past several months, stomach bloating for as far back as I can remember.  I recently had my gallbladder removed, in Jan. I also started with major stomach acid, this is new.  I had an endoscopy and they found gastric erosion.  No clue really why.  My 2 blood tests (celiac panels) both came back negative, my biopsy also negative.  I have been having chest pains (breast bone area) and throat stuff, feeling like something is stuck in my throat all the time, along with tonsil stones, dizziness and even pass out episodes.  I have treated candida overgrowth twice now, one about a month ago with 2 weeks of Diflucan.  I was skin prick tested to some things, and came back strong positive 4, to Chicken, Corn and Soy.  A 3 to dairy.  Sometimes dairy bothers me, sometimes not at all.  I recently did enterolabs testing and came back positive to gluten, and negative to caesin.  I feel like I am really reacting to so much that my symptoms don't subside and it's overwhelming.  I cannot narrow down everything I feel I am reacting to.  Nor do I know if the tests I have had thus far are really accurate or not?  How can I find out what I am reacting to, what is the worst reactors for me?  I have another Dr. appt with a 4th GI Dr. next week.  I am wondering should I being seeing a GI at this point, or an allergist yet again (3rd time)?  I also went to the ENT who said I have tonsil crypts and stones.  I feel these are happening because of a food reaction, they have been really BAD in the past couple months.  I can't take this anymore please help!  I am also vitamin D deficent and wondering if I have the start of osteoporosis, my spine has started curving and back pain started about 6-8 months ago.  I said to my chiropractor I feel like my spine's curving or something...he said it is!

Sorry you are feeling so unwell.  You mentioned in your post that it feels like there is something stuck in your throat.  Have you ever heard of eosinophilic esophagitis? Difficulty swallowing is a symptom of a condition know as eosinophilic esophagitis (also known as EE), which I believe is caused by food intolerances and has symptoms similar to celiac.  My daughter, diagnosed celiac along with dairy and soy intolerances, had a note to check for EE on her biopsy report, due to a high amount of eosinophils in her esophagus.  Please know that I am not a medical professional or diagnosing you by any means, I just read up on EE and thought I'd throw the info your way.  I see you had the scratch testing, have you considered a patch test?  Sending you wishes of better health and happiness.

[bekkaz]

Sorry you are feeling so unwell.  You mentioned in your post that it feels like there is something stuck in your throat.  Have you ever heard of eosinophilic esophagitis? Difficulty swallowing is a symptom of a condition know as eosinophilic esophagitis (also known as EE), which I believe is caused by food intolerances and has symptoms similar to celiac.  My daughter, diagnosed celiac along with dairy and soy intolerances, had a note to check for EE on her biopsy report, due to a high amount of eosinophils in her esophagus.  Please know that I am not a medical professional or diagnosing you by any means, I just read up on EE and thought I'd throw the info your way.  I see you had the scratch testing, have you considered a patch test?  Sending you wishes of better health and happiness.

 

I had never heard of it, but I found out about it on my own by starting to search for the throat anatomy to try and tell these ignorant Dr's what to try and look for.  So, despite me telling my GI that I felt like something was constantly stuck in my throat, and him seeing that my stomach was eroding away.  When I asked after the fact to space cadet nurse on the phone, did you check me for EE.  She said yes, it was fine, he did a biopsy.  Then, a few days later talking to her again on the phone she said...oh you mentioned the EE.  I said YES.  She said he didn't take any biopsy of the esophagus!  She said he would have if it looked abnormal.  I am sure it is this EE, OR that I am having acid reflux, which I didn't know was possible without the burning heartburn.  Until I once again educated myself by googling acid reflux without heartburn, and found a post by Dr. Oz.  My ENT said has anyone mentioned possible reflux?  I am not sure how I have saw 4 GI Dr's, and this wasn't mentioned.  My chest kills me, I have been to the ER 6-7 times, which is NO help.  They just hook me up to the EKG machine, once they see I am not having a heart attack, I am out the door.  Even though I lost 30 lbs in 2 months, my C-Reactive protein is 3x higher than normal, and my wbc has been elevated for over 2 years now!

[bekkaz]

Hon, if it is a gluten reaction, even if you tested "negative," it is going to make you more sensitive to a lot of these other foods.  What you are describing is somewhat mimicking an ongoing inflammation problem of arthritis I have with the connective tissues and my bones, which I control the symptoms of, by eating a strict diet.  It does not "cure" it, but it has kept it from getting worse, and I am one of the few people that I have ever heard of who did not go the heavy- medications route, yet got better instead of worse - my current doctor cannot believe that I can function with some parts of me looking like this.  

 

You will have to go on a limited diet, eating only a few foods out of each group, such as meat, eggs, vegetable, fruit, fat/oil/nuts, and keep a diary of everything that you eat, and see how you react to it, before you add another food in, one at a time.   When and if you take a vitamin and a mineral supplement, make sure it is gluten free.   Yeast overgrowth treatment-  unless you repopulate yourself with "good" bacteria and give them a happy home to live in, they tend to come back with a vengeance. "Nature abhors a vacuum."  So you will be wanting to limit sugars (obviously....), starches from grains, and dairy, because they can be the big drivers of that sort of reaction.  If ever anyone should be taking probiotics, either in natural or from the store form, it is you.  Then eat to feed them.  In the future, you may be able to add a lot of foods back in, once you get the ones you SHOULD'T be eating in your compromised state OUT. 

 

You may also have to turn what you eat at what time of day upside down, eat a non- modern breakfast, and not do cereal products at breakfast, at all....  this means things like nut flour pancakes, or eggs and fish, or coconut milk, once you get the gluten out, you should be able to eat fats again, even if that seems counter- intuitive right now, and you can use fats and proteins for fuel, if you are in a state where you cannot handle the grains, yet. 

 

If you can't stand the thought of cooking certain meals, just cook 4 or 5 servings of eggs or meat at a time and have leftovers, for example, keep hard boiled eggs in the refrigerator with a plate of cooked servings of meat slices, then add vegetables, fruits, and nuts as needed. 

 

Canned pumpkin (be sure it's not processed on wheat lines, as one organic brand from "Whole Paycheck" is) is an extremely versatile food which is just about perfect to be either sweetened and used with coconut milk for breakfast, or savory and used for soups, chile, and stews as a thickener.  Zuchinni can be shredded and used as a pasta substitute.  You don't hear of many squash reactions, so this is another food to try.  Cabbage leaves can make an awesome baked lasagne noodle substitute, altho it sounds like it won't work, it does.  (and there is such a thing as non dairy cheese substitutes, also, if you are in a cheeseless phase). 

 

Re the chicken- when you try that again, try the organic, rinse it well in water before cooking, makes a HUGE difference for some to not be exposed to antibiotics.  This has been a huge game- changer for me, it's easier to take one good, $ not cheap, but safe large organic chicken breast, cook it, and get 4 or more servings out of it when it is put in a safe sauce that I have made from vegetables or organic yogurt and olive oil and/or coconut milk, and serve it with cooked rice or rice noodles, than to risk eating a regular one and having another one of those "what was THAT?" reactions, not gluten, but not feeling right afterwards.  

 

Really, you can do this, you just need to go on a variation of SCD or Paleo for awhile, then you can see what you can really eat, which might be more that you think. 

 

I am keeping the food diary.  That's my frustration, I just cannot narrow down what I am reacting to.  It seems to not matter.  I actually BAD ME, got so frustrated and overwhelmed that I said...I still feel like crap, I am going to eat gluten again.  So I am eating probably everything I shouldn't again.  I just want a test that can tell me.  Yup, stop eating this.  Is Soy, Corn, Chicken indeed a problem or not?!?  I cannot tell.  Rice seems to bother me, is it really rice?  Or is it because rice is acid forming and my stomach isn't healed.  I feel like I am telling everyone, I can't eat that sorry...nope can't eat that either.  Ughhh~  I have cut back my eating out to almost zilich, nada!  As far as dairy I had a small piece of pizza, nearly died, got super super sick.  However, the night I ate Fried Fish, no problems.  Later that day an ice cream cone, no problems...but the pizza killed me.  Dariy on the skin prick ige testing 3, positive.  Caesin on the stool IGG, negative.  WTH?  I give up.  I don't want to eat salad for the rest of my life.  Sorry, thanks for letting me rant.  I was on several supplements, my stomach was burning like CRAZY right through the PPI's the GI gave me (did nothing) so I stopped ALL supplements for now, except pro-biotic. stopped the PPI's and started drinking Organic Apple Cider Vinegar with Honey, it's helped me more than anything with the stomach. However, the chest/throat still BAD.  Stomach acid still does come and go, but much better than a couple weeks ago.

[1desperateladysaved]

Were you gluten free when you did the celiac panels?  They can false negative if you were.

 

I hope you will overcome your current struggle.  I hope you will find out what is wrong.  I hope you will feel well again.  I would encourage you to keep searching for answers.  I am sorry it is not always easy and a smooth road to recovery.

 

Diana

[Lady Eowyn]

Hi

Sorry to see you are in the wars!

Don't know about some of the medical problems but when I first went gluten free it wasn't very long until every other food seemed to be causing problems and I felt so ill from everything. I started cutting everything out - rice, potatoes, soy, dairy, histamine foods, salycites (sp?), all processed food, other nightshades ..... you get the drift. Well overwhelmed , really cross  so went beserk and ate everything. (Well, not direct gluten but things with small amounts in). Super ill - but I was anyway.

 

I quickly stopped and thought about it and decided that I had to do one step at a time - ill or not - or else it wasn't going to work. 

So step one was cut out all gluten including cc issues.

I could do that and although other foods above were making me unwell I kept them down to small quantities and concentrated on totally gluten free.

This put me back in control and once I had that and felt that I had got used to and effective at avoiding all gluten I went for the next biggie - soy.

 

I have cut out other things since and there are more to go (hopefully temporarily) but that was my way of doing it.

Don't get me wrong, I'm sure that the best way is to go cold turkey and cut it all out but that didn't work well with me and I thought it was better to have a plan that I was able to do.

Just for the record gluten and soy give me chest pain too.

 

Good luck to you and if Plan A doesn't work, go to Plan B. 

(All plans start with 'get rid of that gluten').

[GFinDC]

Hi Bekkaz,

 

It can be confusing to figure out food intolerances.  But it can be done if you simplify your diet.  If you look at most processed foods you will see many ingredients listed on the nutrition facts panel, many of them not food at all but preservatives, colorings, texture enhancers, etc.  So, you get a grocery cart full of those processed foods and you have a regular chemical factory list of ingredients you are taking home to eat.  Cutting down the number of ingredients you consume goes a long way toward identifying possible problems.  If you are only eating 10 foods a week it isn't as hard to figure out as it would be if you are eating 100 ingredients in a week.  That's the reason elimination diets work, they simplify things enough that you can identify problem foods.

 

The first step towards a simpler diet is to switch to only whole foods, nothing processed.  Or if you eat something processed it should have 3 ingredients or less, and all of those ingredients should be foods, not added extras.

 

With celiac disease the ability to absorb nutrients can be impacted, so people can become deficient in vitamins and minerals.  Getting your vitamins and minerals back in range can take a while as the damaged gut needs to heal so it can sbsorb them again.  Some people get sub-lingual vitamins or infusions if needed.  Takining extra amounts of vitamins may not help if the aren't absorbed.

 

The testing for celiac is not perfect, so it is possible you have it or have NCGI even if the tests don't come out positive.  Doing a gluten-free diet for 3 to 6 months is a good test though.  Most people will have some symptoms improvement in that time if gluten is a problem for them.  It is a good idea to write down your symptoms so you can note changes.

 

Were you tested for H.Pylori?  H.Pylori can cause plenty of symptoms also.  It is not unusual to have it.  I take mastic gum and DGL for it , also Betaine HCL.  Pro-biotics are alsp important if you have been on antibiotics for awhile.

 

 

 

 

 

[TracyFL]

Hi!

 

I am so sorry that you are struggling so much, and feeling unwell.  I am very new to this as well, so I won't be much help, just wanted to say hello and send you a hug!

 

I've been gluten-free for less than a week with significant improvement in my symptoms. Yesterday I got sick again, probably from soy in some sausage patties, so I can feel your frustration.  I would definitely simplify your diet like the others said, and go from there.  It can't hurt, and will probably help;)

[bekkaz]

Thank you all for your reply's.  This has been a really really tough week.  I have been to a GI Dr. locally, and drove 5 hours yesterday to be seen at the Mayo Clinic Hospital, today was seen at the clinic, just for a consult with the Dr. it was 650.00 out of pocket!  My ins. won't pay as they want me to go to their Dr's, but I am desperate.  I am sad to say I am still really sick and don't know why.  GERD is what they are treating for, even though I have already been on several PPI's that haven't helped, they are trying another.  Along with Welchol and a medicine to coat my stomach and espohogus.  I was shown on my CT scan to also have inflammation and erosion to my cervix =(  So now my stomach and cervix are both inflammed and eroding.  My gallbladder which is now removed was also chronically inflammed, my throat is all red and inflammed.  I don't want to take PPI's for the rest of my life, I want to know what is causing this!  They are TOTALLY blowing off my enterolab IGG stool test showing gluten intolerance.  Telling me to go ahead and keep eating gluten.  I am beyond depressed from this.  My Mom is even saying if you go off gluten now you won't know if the meds for the stomach are working or not, you can't try everything at once.  I can't even work for the past days, I have to go tomorrow I have a new job, I will get fired.  I can barely get out of bed the acid is so bad! 

[shadowicewolf]

I have GERD. I cannot take the meds for it because i became intolerent to them and they weren't doing anything and were making things worse.

I control it via diet. No greasy, no fatty, no rich. I eat small meals frequently. I only drink water and on occasion milk.

 

I was at one point, so bad that i couldn't hardly stand to eat. It isn't fun.

 

I am happy to report now that my throat doesn't bother me anymore, and my acid reflux is relatively under control

 

Go gluten free, see if it helps. That shouldn't change a thing in regards to meds.