The Celiac or Gluten Intolerant Diagnoses…….. I told you I didn’t feel good!

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I’ve titled this blog ” The Celiac or Gluten Intolerant Diagnoses ……I told you I didn’t feel good! ” Why you ask? Let me start from the beginning……My whole life I’ve had issues with allergy’s….undiagnosed allergy’s. I can still hear my mother say, all you did was cough all night long. I constantly had to clear my throat all day and night long, just like my mother had done and still does today. Not only that but I had a hard time when I was in grade school concentrating and comprehending what was being taught. I also remember having anxiety although I was so young I didn’t understand what was happening to me. I remember also not being able to wear perfume like all my girlfriends did. For some reason I couldn’t stand the smell and I could taste it and it also burnt my mouth and nose. I also began to have depression but then again I didn’t know what that was or why I was feeling that way. I also had constipation, I’d go for a week or more before having a bowel movement. I suffered daily with migraines and then again I thought this was ” normal ” and I didn’t understand what was happening to me. I learned to live with it because I thought it was all ” normal. ” As I grew into adulthood, becoming a wife and mother I did all the things a woman would do. I took care of my husband, children and home and loved every moment but along the way I suffered still with all these things I’ve mentioned and then some……The migraines got worse and along with them dizziness and nausea, I began to get adult acne, weight gain and the depression got worse, suicide thoughts came and went…..thank God they went! I called out to God for help daily and he was always there. 😇 I pressed on…….. And on….and on. Then one day my stomach started something new. I began having acid reflux, it was terrible! I also had a gnawing irritable feeling in my stomach constantly, the feeling that I was hungry but I wasn’t. This went on for years but along with that came diarrhea 4-5 times a day and the worst abdominal charlie horse like cramps that would put me in a flat on my back stretch and I’d have to push inward on my stomach in a flat second with a most ugly painful look on my face! It got so bad at one point that my husband was getting embarrassed in public with me because of what I’d have to do to make it go away. It began to get worse, my body hurt so bad from inflammation that I could hardly walk across a room. My feet were so painful to walk on. The muscles in my body felt so weak and sore. I began to sleep allot. I could hardly keep up with my home cleaning, just a little bit everyday was all I could handle. I never in my entire life felt as bad as I did then. I didn’t say anything to my family but I truly thought I was going to die. I went to my doctor who had been working with me to try and help me feel better. She put me on a depression and anxiety medicine, a hormone cream and sent me on my way…….It didn’t help. I went back and she did blood work which we had been watching because my white blood count had been very high for the last few ” YEARS”….hellloooooooo……. Anyways, she began to consider other problems, one of them leukemia, which is in my family. Well now that was a scare but at least it might have been an answer. So off to a Hematologist I went. Now if you have never been to a cancer clinic before let me tell you it was scary! When it was all said and done……blood work up done, clinic tour completed, next appointment made and walking out of the building side by side with my husband both of us in shock…….getting into the car and driving to get something to eat, we both sit in the booth starring at each other and both saying…..it’s going to be just fine…..it’s not going to be leukemia…… And then realizing the BIG possibility that it could be……lets not tell the kids…..lets not tell anyone till the test results are in……then we both began to cry……….it took forever to get the test results back! Thank God I did not have leukemia! That was over……BUT…..they couldn’t figure out what was making me so sick! They blamed it on my thyroid……ya know…..everything gets blamed on the troublesome thyroid! ( insert sarcasm here ) and eye rolling! So back to the den corner sectional I went because I couldn’t do anything! I was afraid to leave the house for very long because I would have to run to the bathroom…..and most times not make it in time…… When we would go out for dinner I would have to get up in the middle of dinner to hit the toilet and end up spending half the time in the bathroom….. My mother or kids would always come in and check on me…..I was so embarrassed! Or on the way home I’d be telling my husband to hurry because I didn’t think I was going to be able to hold it! Then something new started happening to me, my eyes began to go blurry, my mind began to go fuzzy, I couldn’t concentrate at all, I couldn’t remember things like I normally could do. Even grocery shopping began to be a problem for me. I began to be so anxious that I couldn’t and didn’t want to go or do anything without my husband being with me and helping me. It was terrible! I had hit the bottom and had no where but The Lord to turn too. I began to hear The Lord tell me to go on Gods Diet like I had done before about 7 years ago. Gods diet was what he had told me to eat back then which was all fish and veg and fruit. Now I heard him but I didn’t do it. I know…..I should have listened but I chose not to. I did however start to eat better but I still was eating all gluten products like whole wheat bread, cereal, and of course gluten is in everything now days even spices and makeup, body lotions, hair shampoos, toothpaste, detergent, ect. Now of course I didn’t know anything about GLUTEN or GLUTEN FREE or CELIAC. Until one day I remember a friend telling me she thought I might be celiac…..what? what’s Celiac? I started doing some research on what that was and was shocked to read all the symptoms……it was me…to a T….. I couldn’t believe what I was reading! This could be my answer! I remember my husband coming home one day after talking to this same friend after he had completed their job. She had told him about going gluten free and how it had helped her and she thought I should do the same thing. My husband Randy wanted me to try it and I had just decided that day that I was going too ;) Going gluten free has its challenges…I wont lie….I did allot of looking up what has gluten in it, what I could eat, what I couldn’t eat, I spent allot of time in the grocery store……so much time with my little book that I think I made the office people nervous because at two different locations on different days I had them come and inspect what I was writing about! haha I guess they thought I was a spy shopper or something…..lol. Anyways…I did my homework! Well it only took a couple of days for me to start to see a difference…… OH HAPPY DAY, OH HAPPY DAAAAAYYYYY 😊 little by little I started to see and feel a difference. My stomach started to feel better, my bathroom trips started slowing down ( that right there was enough to shout Praise God over and over a million times over! ) my body pain started to lesson, I was walking across the room with less pain, my mind was getting clearer and my vision was much, much better! Over the course of the last 8 months of being gluten free with the exception of an occasional gluten contamination from going out to eat….. (and now theres a whole new blog to write about….) I feel that I am almost at a 💯% I still struggle with the same issues when I get exposed to the dreaded gluten. I feel the only safe way to stay gluten free is to eat at home 💯 % of the time but that’s not reality. We all love to go out to eat, go on vacations, eat at family and friends homes so I have to be very careful and sometimes put my trust in others to help keep me from getting sick…….I have to put my whole trust in God to take care of me. 😇
So…..onward I go. Yesterday I had my first Dr. Apt with a Gastroenterologist. I have to tell you I was so scarred he wouldn’t believe me or listen. I’ve been sick for so long asking for help from doctors and them not listening to me that I had pretty much lost all confidence in them. BUT I was pleasantly surprised to find that he was very willing to listen to all I had to tell him, agreeing with me the whole time, even telling me that it sounded like I had correctly self diagnosed my sickness……YAHOOOOOOO He heard me! He understood me! Next step is….What? I have to start eating gluten again?!!!!!! He wants to do an upper and lower GI plus a Biboop….Biboop biboopsy……{ sorry a little My Big Fat Greek Wedding Just came out of me….LOL } biopsy and some kind of special blood work up the day of the procedure. It will all be documented and put in my health history for myself and my children and grandchildren. At first I was thinking NO WAY AM I EVER GOING BACK ON GLUTEN! But then when he said for my children and grandchildren that thought all went away. It’s only two weeks…..I’ve lived my whole life feeling this way, I can handle two more weeks right…..I can do all things through Christ who strengthens me. :)
Confession time: So, I’m on my way to my moms apartment after my Dr. Appointment, I’ve already called and given the news to my husband and I’ve got time to think and process what I’m about to do. I feel so anxious and my mind starts to play back the memories of before gluten free…..not only the bad BUT the good……like Mexican food, hamburgers and fries…..donuts and chocolate cake! All the things I haven’t eaten or even wanted! BUT now I’m remembering the Dr say eat a burger, eat the bread…. Eat the pasta……I’m nervous but to be truthful…a little excited! I’m about to eat some chocolate cake! Some real chocolate cake! ……I haven’t yet but I’m planning too. ;) Ok, I’m about to drive up to get my mom, I’m taking her to lunch and were eating Mexican food. Here goes: I eat it….I’m thinking to myself ” I know I’m going to jump up any minute and run to the bathroom but you know what? I didn’t! I was shocked! I didn’t even get a sick tummy right off the bat! what?! An hour goes by and I start to feel the bathroom need…..but it’s normal….hum….now I’m starting to think what if I’m wrong and its not the gluten?! Next up: Randy and I go out to dinner and we decide pasta is on the menu. I get my favorite Fettuccine Alfredo with shrimp and I have one piece of Toast with the bruschetta as an Appetizer…….hum? Tummy still not feeling like its going to Explode……..I’m shocked! Although I do have bloating and some discomfort around my esophagus…..the Acid reflux begins. This morning for Breakfast I have two eggs over easy two pieces of whole wheat toast and butter and jelly….= two bathroom trips but it was normal. Lunch was a Cheeseburger and french fries= 2 more bathroom trips and it becomes very loose. And then my stomach starts the normal water bubbling noises it has always made as it runs through its race course to reach……the bottom! Have I said to much? Am I giving to much info here? TMI…… I think not….I want to share this experience with other Celiac’s, Gluten intolerant, people. We need each other for comfort in a time of confusion about our bodies and what is making us sick and killing us before our time. I’m on day two of this two week journey of gluten exposure. I plan to continue on with this blog as I feel it is necessary. Please remember me in your prayers as I’m sure it’s going to get worse as the days go on.
Update:
Day 3- Went to Red Lobster and got an old favorite, Parrot Coconut Shrimp and yes I did eat a garlic cheese biscuit but only one because I have found that bread in my mouth and going down my throat is not pleasant. :( weird. Anyways, I enjoyed the shrimp but after about four of them my stomach started to hurt and I could feel an uncomfortable burn in my throat so I stopped. After coming home I went straight to the bathroom only to realize that I am very CONSTIPATED! And that my poop was now BLACK. Am I reverting to pre- diarrhea? I’m so confused right now and I don’t know what to think! I’ve been GF for 8 months and have been feeling like I’m a different person…..almost normal…..healing……what’s happening to my body right now? I’m afraid.
Confession time: went and had chocolate cake with ice cream…….have to admit it wasn’t as good as I thought it was going to be……..got tummy ache and burning in my throat.
Update:
Day 4- Still constipated……did have black poop again……finally! Had two pieces of toast with butter and grape jelly. Noticeable burning around and in my mouth and under my nose. Stomach bubbling. Today the shaking and Anxiety has returned. My mind seems to be getting foggy and I am wanting to stay home…..alone….quite…..not wanting to talk….withdrawn………………….
Update:
Day 5- We decided to go have breakfast this morning at a local Family owned restaurant named Shilos. We haven’t been there in at least 8 months since they don’t have a Gluten Free Menu and I’m worried about cross contamination. I got 2 eggs, sausage, hash browns, biscuit and sausage gravy. It was brought to me, set in front of me and I had this fear come over me just like all the other times that I’ve eaten along this self glutening torture. Little by little I ate…….till I just couldn’t do it anymore. I only finished half of it…..fear winning this round. It was going to be a great day, spending it with my husband and running around doing some shopping…… I thought…..we didn’t plan this out very good……should have done shopping first then gone to eat so I could have been home before the diarrhea finally hit instead of in the middle of the store! Running then coming to a complete stop…..clenching……pleading with God to help me make it to the bathroom on the other side of the store……then taking baby steps…..and then finally making it with a full on bodily flush………….. Only day 5…………..God help me!

Update 6-
Day 10….. Blah…….I’m in a mood this morning. I hate this feeling. My belly feels very hard, bloated. My neck is all broke out with pimples. My skin feels all bumpy on my face and neck. Flattering image huh.

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Ok I do have a funny to tell you, maybe it’ll put a smile on my face just telling y’all about it and a blush because it will be one of those TMI stories….LOL

So, yesterday was another mother daughter day….love those days…. Anyways, we always go out for lunch and then do some shopping. Below is a pic of my momma :)

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Scene 1: We’re eating lunch, I’ve chosen fried in flour fish and chips from the lunch menu at Red Lobster knowing full well I’ll be hitting the toilet in 30 mins.
My mother bless her heart says to me……..honey you may need to start wearing adult diapers………my face blanches because there’s a loooooong table of MEN to the right of me who I know MUST have heard her say that. Then she proceeds to tell me how she always keeps Pads in her purse just in case she needs them.

Scene 2: I’m driving to Walmart….must be my place to ” unload lately ” I’m not even in the store yet and I’m telling my mom I’ve got to go straight to the bathroom and for her to go to the Pharmacy and get her medicine then wait for me out front of the bathroom and I’ll be out when I’m done.

Scene 3: So I’m on the pot…..my tummy is not happy and neither am I. My sweet dear mother comes in and YELLS…..Kathleen?! DO YOU NEED A PAD? I’m so embarrassed and I think to myself…..MOM! And then, I wish I could disappear…..then I think, I hope these woman are all gone by the time I’m done…..I hope no one sees my face…….Then I say…..No mom……she leaves……thank God!

Scene 4: A few minutes later I get a call on my cell from guess who……yup my momma. ;) she wants to know if we need to go home, I tell her no just give me a few more minutes and for her to go on shopping and I’ll call her when I’m done. Thank God she called me instead of hollering into the bathroom…… :/

Later that evening I’m telling my husband about it and were both laughing because now that its over its funny…….sort of. :/
He says its just your mommas way of taking care of her baby girl…….and I say Yeah…..a 51 year old baby…… Who she thinks needs to wear diapers again and now that I think about it…..she has a good point!

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Update7-
Yesterday I got a call from the endoscopy billing office. They said my insurance deductible hadn’t been met yet and I’d need to be prepared to pay $950.00 the day of my procedure. Man!!! I hadn’t thought about that. So I started to rethink this whole deal. Should I or shouldn’t I? Do I really need to have this diagnosed? Does it really matter? It doesn’t matter to me if it comes back positive or negative …… I’m NEVER eating gluten again! So, when Randy got home from work we talked about it and decided to go ahead with the testing. RATS! For a minute there I thought I was going to get to stop eating gluten and start feeling better again……..4 more days of gluten then 1 day of no food, blood testing and prep….oh the dreaded prep day and then the next day is the day I start my life over again. I can hardly wait!
Update 8-
Something I realize that I haven’t mentioned during this two weeks………I’ve had some kind of rash or allergic reaction to something. I’m not sure if its the gluten or something else. All I know is that it burns, itches, tingles all over my body. It seems to come in waves also meaning it gets better but not completely gone then it gets worse again. I truly feel like I’ve been tortured for two weeks. :(

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I had to go in this morning to do a blood test…..they took 5 Vials of blood. Thank goodness needles and blood don’t bother me EXCEPT if its my husbands or kids then I faint! Haha
Today is my day to not eat, only have clear liquids, and do my body flush ………it’s also the day that I’ve decided to clean out my two refrigerators……….hum….something seems wrong about that doesn’t it. :/
I need to share how I’ve been feeling emotionally. I feel like I’ve been on a emotional roller coaster. I’m so worried that my test will come back and say I’m not celiac or that I don’t have a gluten problem. If it does then what’s wrong with me? After all these years of being sick and then going gluten free for 8 months and feeling GREAT why would I be so worried about the test results? Do I need validity? Do I need proof? Yes…..yes I do. One way or the other……….I need to know. Tomorrows the day for the procedure 👏👏👏👏 😊 and my life of living gluten free begins again. Oh Happy Day 😇

Update 9
It’s all over…… Thank God! Test results from biopsy won’t be back for a couple of weeks.
Did find out I have Irritable Bowel Syndrome and Acid Reflux with an Ulcer plus Inflammation in the stomach………. I’m not surprised at all.
On a good note, no Polyps or tumors….. Thank God!

Below are the pics of the procedure. I don’t know if this is really necessary but I figure for people who would like to know what it looks like and this is a blog about a diagnoses it would be important to the ones who are suffering and need to know info.

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Now back to the day of the bowel prep…..that stuff they make you drink…..OMGOSH! It’s terrible going in and a million times worse coming out! Just Sayin………plus……here’s some TMI……my poor bottom burned like pure acid was flowing out. Couldn’t get off the pot for 1-1/2 hours. I ended up using Vaseline over and over to help protect the skin. It helps a little so remember to have a bottle when starting this.
Next morning I had to do it all over again…..and then the Charlie horse like spasms began and I thought I was going to die! That’s the IBS kicking in! I had those right up to when they were about to wheel me in for the procedure. I was glad to be knock out!
While waking up you will notice that you are passing gas ” from both ends ” Embarrassing! BUT I had the sweetest older male nurse, I said Oh Excuse me….and he said now honey that’s all normal and this is the right place to do it. ;) LOL So…..I let them rip! HA! I was so worried that I was going to have an accident in my pants and he said he had the perfect panties for that and then brought me…..You know what Im going to say don’t ya…….an adult pull up diaper…….my momma was right. :/ But I sure did feel secure and wasn’t afraid to go out for breakfast with my husband afterwards. I liked them so much I think I’m going to go buy some for emergencies…..HA! Again, my momma was right.
Randy brought me home and I went to bed and slept the day away.
Today I’m feeling some soreness in my lower abdomen and I’m taking it easy. All in all….after all is said and done, I’m glad I did it. Now, in saying that, yesterday morning I was thinking that I must have been crazy to put myself through this and thought I might have made a mistake but now I’m really glad I did it and so glad it’s over. Yesterday I started back on my Gluten Free eating and I’m NEVER going back!
7-10 days and I’ll find out about the Celiac Disease biopsy report. 4 biopsy’s in all. Doctor did put me on 40 mg of Prilosec every day so that should start to heal my stomach ulcer and help with the Acid reflux.
Now……to start the healing process. ;)
I’m going to eat clean…… Lean protein,vegetables, fruit.

Update 10: A
Where to start on this update…….. First thing to come to my mind is (depression)…..(then migraine) day 3 of a migraine. This is my account of what I’ve been experiencing since the upper and lower G.I. procedure. Diarrhea…..never ending diarrhea. My abdomen is so sore. My body still itches, it feels like little needles. My mind is confused at times, I’m very quiet, withdrawn, unhappy. Suicide thoughts have come back, I feel hopeless, I have no hope……….. I’m tired of the fight, Ive been crying out to God to help me, asking him to take me because I feel like my body hates me. And to be totally truthful…..and not to scare anyone….because this is a true account of my experience with being glutend for this blog………I have been thinking about ending it all again. I’m a Christian and I know this is not what God wants for me. I know this is an attack from satan to kill me and destroy me so I listen to God and hang onto him. Today is much better, Im thinking more clearly today. Depression has lifted and my joy has returned. Feeling more normal again and feeling relieved. The migraine has lessened and my mind is clearing and my eyes too. It’s been 8 days since the biopsy and 9 since I’ve been gluten. Thank God it’s over. I should have the results in another week but no matter what the result is, I will never eat gluten again!

10-B
I was remembering something kind of funny now that it’s over that I wanted to share. The day of the procedure I was laying on the bed in the prep room and a nurse was asking me all kinds of questions. Pretty much everything I already had put on my paper work……During this time with her I was having times of extreme abdominal charley horse like spasms and in a whole lot of pain. You know the kind of pain that makes you unable to talk and you can’t keep your eyes open and you make an I’M IN REAL PAIN RIGHT NOW kind of look on your face….because you can’t help it…….Well, during this the nurse asks me, on the scale of 1-10 how would you rate your pain? I said a ” 10 ” she looks at me with a roll of her eyes and smart-tilac voice ( she looks like she might be maybe 25 years old ) and says …..with 10 like having your arm cut off while your awake…….To make her happy I said 5…… But on the inside I was thinking it felt like my colon was being cut in half….I wonder if she’s ever felt what I was feeling at the moment…..probably not. If she had she wouldn’t have been so insensitive about it. Now that I’ve wrote about it, it’s not as funny and I’m a little bit ticked off! HA HA 😤😡

Finale Update-
Got my report back and I am NOT Celiac. But do have severe gluten intolerance, irritable bowel syndrome, and an ulcer in my stomach and severe acid reflux. Dr. said to stay on a gluten-free diet eat lots of fiber and I should do a lot better which I’ve been doing and am already feeling so much better. All I can say after all of this is….. I’m so thankful that I found out what has made me so sick for all these years and that I’m so thankful to God that it’s over 😊

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