My Celiac Story! Warning: It's Long!

i will add a more detailed reply later, but just a quick comment to start with because it is late: Have you had a stool test to check for any of the following: parasites? bacterial overgrowth? gastrointestinal yeast overgrowth of both/either candida and/or saccharomyces cerevisiae? h-pylori? leaky gut? malabsorption? c-diff? (even tho you are constipated, bc I had c-diff, among many other things (I will post my story in the next few days as I am new to this site) and when I had c-diff, i experienced a sort of constipated diarrhea. I do not know how sensetive you are to gluten or how bad your food allergies are, but I am a newly diagnosed celiac who is very very very sensitive to gluten and who has more food allergies then all the people in a small country combined. (I cannot even be in restaurants bc of the cross contamination and food particles and flour etc in the air... I am 28 and was just diagnosed after 28 years of health issues and I'm not gonna go crazy with details right now bc like I said it is late and I will post my story soon, I'm just not ready to take you down that rabbit hole just yet bc Ill be up all night writing about it...lol... but in any case, first thing you NEED to do is get yourself a copy of a book by ELAINE GOTTSCHALL! I got my copy on amazon very cheap....read it...second, check out this website: http://www.breakingtheviciouscycle.info/home/ and consider adhering to the SCD DIET, which you will obviously need to customize to your own allergies and make it your own diet, but the SCD diet will give you the framework you need to get started...third, you need to get off the dulcolax, wein off slowly. I know it may be the only thing that gives you relief, but any laxative besides miralax creates mucous, which ends up feeding bad bacteria in your gut...see mucilaginous herb/laxatives on the SCD LEGAL/ILLEGAL LIST at the website i gave you. Mucilaginous supplements are full of starch, starch feeds the bad bacteria. Also, if you are not seeing a noticable improvement in your condition after being gluten free for as long as you have been gluten free, have you considered that maybe you are not actually gluten free? like glutening by cross contamination. How about your cosmetics? lotion? shower products? chapstick? mascara? cleaning products? TOOTHPASTE and mouthwash?? laundry detergent? dish washing detergent? hand soap?...do you have a pet? ...if so, is the pet's food grain free? if it is grain free, is it free of corn, potato, or whatever food allergies that you have????? do you have separate gluten free/for your use only: silverware? pots? pans? tupperware? cooking utensils? How about the organization of your fridge and cabinets? If you live in a multi person household, then are the items that contain gluten ALWAYS stored on the lowest possible shelf, with your gluten free items ALWAYS above the items that contain gluten so that when someone else careless whips out their gluten filled item from the fridge, cabinet, there is no chance o, for example, seasoning with gluten falling DOWNWARD and contaminating your food, which it would if it was on a lower shelf then the items containing gluten. Did you know that if you open a bag of flour, the gluten from that bag of flour can be in the air for up to two hours after it was opens, and it will contaminate any exposed surface. If you are at a restaurant, are you sitting by the kitchen? Is the kitchen an open kitchen in the same room of the restaurant as the part where you dine? Do you bite your nails? If you do, did you check your nail polish and nail polish remover to make sure that they are gluten free? Do you chew on your pens? etc and so on and on...these are all the things I have been having issues with as a result of my struggle with my super damaged intestines from 28 years of exposure to gluten as a celiac, in addition to leaky gut, 2 different types of yeast overgrowth, and multiple types of bacterial overgrowth. I struggle with constipation, and have gone down the laxative route seeking relief, but it just will make things worse and create a dependency for your body. I was only 96lbs to begin with and got as low as 84 bc my body was suffering from malabsorption on top of everything else. For constipation, google the following 4 things: 1- castor oil pack.....you can get the wool cloth and castor oil online. I got mine on amazon. get a heating pad too if you do not have one already. you just saturate the wool cloth with the castor oil, i like to heat my cloth in the microwave first, then pour castor oil all over it, then i wrap it around my abdomen, then i wrap saran wrap around the wool cloth, then i lay a garbage bag on the ground or couch or bed and lay on that in case any castor oil seeps out of the saran wrap, then i put a heating pad on my stomach....castor oil has a laxative effect and should prove to be helpful for you. leave it on either over night or for an hour or two. 2- google epsom salt bath for directions and get some epsom salt and soak in a warm/hot epsom bath for about 20 mins, then make sure you shower afterwards and drink lots of water to stay hydrated. also, do you drink enough water in general? You are supposed to drink half of your body weight, in ounces of water a day. So if you weigh 100 pounds, you should be drinking 50 ounces of water a day. Also, I highly recommend drinking one of two types of water: either 1- distilled bc it has no chlorine in it, which is very irritating to the intestines, especially if you are someone who has stomach problems, OR 2- a highly alkalined (high PH) water...a PH of anywhere between 7-9 is good. A few examples are Figi or essentia or you can make your own. 3- google stomach massage for constipation.... and then get lotion or oil and give your self a stomach massage to help relieve constipation...ALso, you need to stop taking excedrine/ advil...both are awful on the stomach and I will be shocked if you do not have some type of bacterial overgrowth or fungal overgrowth like yeast if you are taking that on a regular basis. the stool test is a must have for someone with your symptoms....and you need to get it done by an integrated or alternative medicine doctor. regular doctors do not check for everything that the alternative docs check for. 4- google acupuncturist in your area or ask your integrated/alternative medicine doctor for a referral because I get acupuncture every week with incredible results in regard to relieving constipation....im telling you, i seriously barely make it out of his office and to the bathroom after treatment...its amazing! I know this is a lot of information and probably so overwhelming, and since I havent explained my situation yet, I just want you to know you are not alone, I have been learning all of these things and I go, and I am still healing ...but I have made so much progress and have dedicated all of my time to healing and doing so naturally, and I am making progress and i will be better eventually, and so will you...so stay strong and be positive...im gonna throw a few more reandom ideas out there and then I have to go to sleep bc im exhausted and my cats want to snuggle lol....but ill post more in the next few days... for now, are you positive that all of the medication that you are on is gluten free? are you familiar with all of the "hidden sources of gluten"? when I say hidden, i mean all of the other names for gluten? Are you on a sugar free diet? are you on a starch free diet? After you become more familiar with the SCD diet, I think you may find that your body may benefit from avoiding as much sugar and starch as possible and adhering to a Monosaccharide diet because monosaccharides are the most basic form of carbohydrates and simplest form of sugar, also making them the easiest for the body to digest, especially if you are struggling with constipation. So look into that too. thats all for now, but im sure that is enough to digest for tonight anyway and enough to keep you busy until i have time to post more... good luck..im sorry you are dealing with all of this, but like I said, you are not alone, I am dealing with it too, and it sucks and it is so frustrating, but the more we learn the more we heal...so good luck and let me know if you have questions and if you have had time to look into any of the things that i mentioned and let me know if you try them and how they work out for you. best of luck.

ForeverArtsy,

I hope you get some answers soon.

My one suggestion is to stop taking Advil and/or Excedrin for your headaches. Both of these can aggravate abdominal pain and problems. If you are having terrible migraines, you should go see a migraine specialist who can prescribe migraine meds that will not hurt your gut.

Well, looking at your post, I could have been looking in a mirror :)

I went from Labor day weekend 2011 until Thanksgiving 2011 with NO bowel movements..not even air was coming out.
I went to a G.I., who had me on Daily: 13 doses of miralax, 4 amitiza pills and 4 doses of lactulose. Then, I had to alternate day 1- enima, day 2- colonoscopy prep..and did that for 2 weeks. and guess what? NOTHING..not a blasted thing came thru.

On my last visit he told me "OK, see you in 2 months!" I looked at him and said, "No. you WILL refer me to someone who will find out what the hell is going on with me, or you WON"T SEE ME AGAIN!"

He was mad, but sent me to a colorectal surgeon. What a wonderful man! He sat quietly and listened to my tale of the last 2 months..he looked at me, said, "Well, here is the first thing we are going to do, we are going to get you back your life..You don't have one, and you deserve one. We are going to do that by performing 2 tests. 1~ an ARM (anal-rectal-manometry). You get changed, lay on a table on your side, and a hose is inserted into your bottom. It is moved in and out, while pushing air into your system..This will determine how much air you can hold..Test 2~ a defocography. You will change into a gown, lay on a table, get some x-rays done. Then a nurse will come at you with something resembling a caulking gun. It is filled with barium and mashed potatoes. Your bottom is filled with it, then you get a few more xrays, then they flip the table up, and sit you on a commode. They will tell you to push, not push, act like you want to push, then finally push it all out. The entire time the machine is taking xrays every 3 seconds. Is this all ok with you?"

I was FLOORED... the tests were set up with in a week, and when they were done, he called me and said my large intestine was dead and needed to be removed.

Fast forward to January of 2012, I had my large intestine removed, 2 feet of my small one, (and for other reasons, a hysterectomy)...I do NOT have a colostomy bag, I have what is called a j-pouch.

So, I guess my question would be, should you be looking at a colorectal guy? That would be my guess...You may be surprised.

What my surgeon said was that my large intestine was in essence a balloon that you blow up, let down, blow up bigger, let down, then blow up bigger, let down...eventually it won't go back into it's original size, and will lose it's elasticity. That is what happened. He said after the 2nd test, that I had a mega colon. I don't remember the exact numbers, but was equal to like a normal colon holds a quart of air, mine held almost 1 gallon and a half...or 6 quarts..
I couldn't be happier with my j-pouch, you may want to go to the ostomies board and poke around there... you may find some answers.

Good luck!