bekkaz

I found out today talking with another nurse from my worthless GI Dr's office...that my biopsy showed high white blood cells in my small intestine.  This is consistent with my blood work over the past 2+ years, as well as my fecal test showing inflammation high white count.  They told me they think it could just be an incidental finding.  The ignorance of these medical people is mind blowing to me.  My first endoscopy showed gastric erosiion and inflammation, now my small intestine is showing it as well.  I said could this be gluten, she said probably not.  When we see celiac on the endoscopy it's HIGHLY noticeable, like no denying it.  LOL  I said I had this positive fecal test for gluten and am getting sick when I eat gluten.  She said and I quote....don't get all wacked over that!  They think I am now having anxiety and just need to pop some anxiety meds for 3 weeks, if that doesn't work, they'll shove some anit-inflammatory drugs my way.  This is hilarous and makes me FURIOUS at the same time!

Yes, gluten can cause this type of pain. So could other intolerances and probably many other things.

I had this. I was on antacids, Zantac, etc. and some other med that did really bad things to my body so had to stop it. None of them really helped.

What did help, while I was still on gluten, was teaching myself self hypnosis or meditation...I literally had to pull a "mind over body" trick. I had to visualize the pain leaving my body by going out through my arms/hands. I had to tell my body to relax and stop what it was doing. Got very good at it. Could do it in 10 seconds in a meeting.

I was careful about always diluting stomach acid with water. Lots if water. Carried around crackers (ha, gluten!) with me. Don't let your stomach get empty. Had to drop citrus/acidic drinks on empty stomach, etc. For me it was always the empty stomach...

So how do I connect this to gluten???

The only time I've had that type of acid/pain in recent history is 24 hours after eating out (and ordering gluten-free)...and I assume I got glutened. I do not screen out anything but gluten....at home or out...I am only gluten-free and strictly so.

And I know exactly the type of pain you're talking about, and only after being gluten-free 9 months and getting presumably exposed have I ever felt it again like I did in my earlier years.

It's terrible.

Get your medical records. Ensure you had complete celiac panels run, not just 1 or 2 tests. Did they ever biopsy you for celiac or just run blood and "look at" your gi system?

If they ran complete panels and took 4+ celiac samples then if try a gluten-free trial to see if it helps. If they didn't test you thoroughly and you want to pursue it stay on gluten and find a doc to run the tests.

In the interim drink water and meditate/visualize.

Thank you for the reply!  I have tried the mind over matter deal, I am not that good at it.  They did run full blood tests for celiac, for the second one I had been off gluten for a couple weeks in between, I didn't know at the time that could make the test false.  I did have 2 endoscopy's, they took biopsy's in both,  both came back negative.  The second one for sure I know they took a few biopsy's...where should the biopsy's be taken from?  I am not sure if they just took one from every area. 

I seriously have no clue what is causing this.  I think it for sure got brought screaming to the surface from stress.  However, I don't think stress is what is keeping it going.  I am surely stressed feeling like this, new job, etc. but one would think that the "stress" wouldn't be there 24-7.  Back in Jan. I had allergy testing done, with needles, injecting under the skin like a needle prick.  I was positive 4, to Soy, Corn, Chicken and a 3 to milk.  No reaction to wheat.  Again, my enterolab is showing positive gluten intolerance.  I had allergy testing again this past Friday, skin prick again but different than the first time.  This time was little plastic sharp things that they kind of twisted on the skin.  They produced NO reactions to the soy, corn, chicken or milk.  I got overwhelmed at first trying to cut out so much.  Now, I am going to try with the big dog.  Gluten, I cannot for the life of me think of what else could be bothering me.  I have to start somewhere.  The thing now is, that I am back on PPI's, acid reducers, Carafate......how do I now determine if it is them that helps me or the gluten.  It's all so overwhelming.  I hate to cut gluten for the rest of my life if I really didn't need to (thinking about this is overwhelming in itself) for me I think that is why I wanted so badly for celiac to show.  So I had zero questions in my mind as to is it gluten or maybe it isn't.  Enterolab staff is telling me 100% get off gluten no if's and's or but's about it.  You are intolerant!  The casein from Enterolab was negative.

Interesting point on the empty stomach, because mine is empty a lot.  I am about anorexic looking for the weight loss, my stomach burns so bad, I have no appetite at times.  So I will try to take that advice and keep something in my stomach.  Mornings for me are 110% the WORST.  I wake up daily at 3-4 am, not really from pain in that moment...but it's like something is triggering me to wake up WHAM.  Then by the time I do get up at 6:30, the second my feet hit the ground.  Hello screaming acid, which will last for hours.  I spoke with a pharmacist today who told me to take like a zantac on top of the PPI.  She said the PPI stops the pumping of the acid, but if acid is sitting in your stomach the zantac will clear that up.  I didn't keep a very good record before but, the ppi's weren't helping....so I switched to apple cider vinegar and honey.  Which seemed to help way more than the PPI's.  I was also off gluten for a week or two.  Then one Friday I said, I am going to eat whatever I want....this is too much (that's when I was cutting out several things) So I went to McDonalds, got a chicken sandwich, fries....felt fine.  That night ordered fish fry, baked potato, cottage cheese.  Felt fine.  Next day, had some regular pasta, and a small piece of DD's pizza.  Within mins. I had major cramps, and was in the bathroom in pain 3x, within an hour after that I had explosive D.  The last thing in the world I want to do is take PPI's, acid reducer anything.  The weird thing for me in my mind is my husband, why him?  Why is he also having this acid problem.  He actually started prior to me getting my acid.  That's why I was bent that it had to be H-Pylori....nope.  Or something we were both exposed to somehow, like the toxic environment...that may have got this GI party started!  I definitely think he has a lactose problem, but maybe gluten as well.  No clue!

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! 

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.

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!