I'm still trying to figure out of I have Celiac or some other intolerance. I could say it all began in January 2008 but I've had symptoms all my life which only got my full attention in 2008.
- It started with a burning sensation in December 2007 but I was drinking a lot of coffee back then to get through a crazy day so I assumed it was too much coffee w/ too much stress (I'm now down to just 1 cup a day in the morning which is a major change for me).
- I got sick on Christmas day 2007 just the usual chest congestion/sore throat thing. I expected to get better. While I got well enough to get through a work day I never fully recovered. I had a full relapse a few weeks later in January 2008. They never could figure out what it was as I develop severe symptoms of what could have been Strep throat or Mono but cultures all came back negative. I was completely out of it for a week. My poor husband nearly took me to the hospital b/c my fever was so high and I couldn't even drink water.
- I eventually recovered from whatever it was but it took about a month before I felt that I could say I had recovered from it. Because I got so sick I quite smoking. I had tried on and off for years but this was the kick I needed in the right direction. I was very happy to be rid of a bad habit. I wasn't a heavy smoker but I was a smoker and I hated it.
- Instead of feeling better because I was over the funk I had and no longer a smoker I felt...worse.
- After the burning started in my stomach I noticed that I had the worst constipation ever. I wouldn't go for 3-4 days. I tried everything to get my bowels moving. Lots of water, apple juice, veggies, fruit and finally fiber pills. They kind of worked but it wasn't a real success. I had a lot of gas pain which was very uncomfortable. I felt like my stomach was always bloated.
- The stomach burn turned into a gnawing pain accompanied by the occasional sour metallic taste in my mouth. I thought it was stress which I had plenty of at this point.
- I started to feel hungry all the time which I associated with not smoking - you know that whole oral fixation thing.
- I tried exercising but I would get that pain in my stomach.
- My body started to fall apart. I began having pain in my hip, back, feet and knees. My job forced me to stand for long periods of time which only made it worse but I had managed for a good while with very little pain until this time where I was in constant discomfort.
- I was also starting to figure out I was in constant stomach pain. Some days were better than others but the pain was constant by April 2008.
- I was also hungry all the time which I couldn't understand. I would eat to the point of being full but an hour later I would feel like I had to eat again.
- My energy level was very low. I would come home and just collapse from exhaustion. My sleep was always terrible though and I would wake up through out the night.
- My menstrual cycle was changing. It got very heavy and clot (Sorry for the TMI) and it was painful. I went to my OB/GYN who did a few tests and said my endometrial was thicker than normal and I could have ablation done after I was sure I was done have kids (very done with that) and had made sure I had another procedure done that caused permanent sterility. I had that procedure done but I collapsed afterward...it wasn't pretty. I then went to another OB/GYN who told me the ablation I wanted couldn't be done b/c of the previous procedure that caused sterility. I was more than a little upset about this...I don't trust doctors b/c I've never had one that has done a good job by me. That is another story. The new gyno says my symptoms are no big deal and basically suck it up. Maybe she was right...my periods went from clotty and heavy to just painful and virtually not existent...lasting only a few days and then going away. I asked if the is pre-menopause symptoms and was told I was too young. Bull! My body says otherwise.
- I went to my primary doctor after my first gyno couldn't figure out what was causing my problems. My stomach pain was terrible by this point. It felt like I had swallowed rocks that were slowly turning in my stomach all the time. The doctor gave me prilosec and order for an ultrasound. I would take the prilosec and then about three days later I would feel a little better...enough that I could finally stop balling up in pain. The only thing that seemed to calm to pain was eating meat (I'm not a meat eater by nature). If I ate meat I would have some relief. I would order hamburgers and toss the bun and eat just the meat/cheese, lettuce, tomato etc...no bun. I don't know why...lol...but now I think on some intuitive level I knew what was best.
- I was in a cycle of eating a lot of veggies/fruit and water and enduring gas. I was also including in my diet what before I rarely ate...crackers, bread (bran), whole grains etc...b/c I needed more fiber. I only seemed to get worse. After the constipation came the diarrhea which was followed by more constipation. On and on it went.
- By August 2008 I started having cognitive problems. I felt scatter brained, foggy and depressed without the depression...just the physical problems that come with depression. My mood was not effected in that I didn't hate myself, I didn't suffer from self esteem issues but I did have all the other stuff. I was forgetting things...ALL THE TIME! It was terrible. I thought I was losing my damn mind. I also felt like my friends, family and co-workers had to be getting sick of me constantly complaining. I sounded like such a hypochondriac.
- By October 2008 I'd given up hope. I never heard back about the ultrasound I'd gotten and so I assumed they found nothing. I just decided to shut up about it all and just exist.
- February 2009 I get sick with the usual seasonal stuff. I go to the doctor who comments on my high BP. I'm 34 and only time I had high BP was when I was pregnant and had preeclampsia. I tell him that is only the tip of the iceberg. He feels my thyroid (which had long suspected might be an issue based on family history but test always come back negative though borderline at times). Doc says my thyroid seems a little enlarged and sends me for blood tests and an ultrasound. He also decides to do a full physical so he sends me for all those fun tests too including a fecal test. Weehee!
- I go to my next appointment for the physical and I list all my issues that have been accumulating over the year (which feels like a million years ago). The only they pay attention to is the constipation. They say I'm too young for this problem. Okay, but isn't the weird pains and weird menstrual cycle also worthy of noting? Nope. Oh, my thyroid has a nodule on it which they say I need to have further tests on. Okay. That never happened and though I've contacted them about the follow up they have blown me off twice. I have to make more phone calls b/c though nodules are not unusual they can mean my thyroid is playing w/ the rest of my body.
- Doc sends me to a GI specialist for the constipation. Turns out though that the GI doctor isn't so concerned about the constipation as he is by the fact that my liver has area that doesn't look normal (this was news to me b/c the ultrasound done in July 2008 was as far as I knew normal but it turns out my primary didn't follow through with the results until March 2009) . As he put it the texture of our livers should all be one consistency across but mine wasn't...it had an area that was not the same as the rest. Well, what the heck does that mean. He tests me for everything he can think of that can cause liver damage but all come back negative. Oh, and my liver enzymes are normal. That was all. WTF?
- May 2009 rolls around and I've put on 30 lbs. I'm tired, miserable and sick of doctors who leave me hanging. I decide to go one this extreme diet. It's low calorie and very low carb. It isn't Adkins which just scares me with all that fat but it is low carb. I can have 4 cups of veggies a day, 4 oz of protien a day, and these pre-packaged meals for breakfast and lunch with snacks. I couldn't have fruit though b/c of the sugars in it. Well, my husband was opposed to this diet b/c he said it wasn't balanced. I knew he was right but I felt desperate for anything.
- Within a week I felt better than I had in a year. My stomach pain was gone. My hip, knee, foot and back pain was gone by two weeks into it. Wow! That is what normal felt like? I didn't have a lot of energy though b/c it was so low cal. Oh, and for the first time in over a year I was regular again.
- Then I noticed that when I hate one of the diets prepacked meals I would get the pain and gas that I didn't have when I ate the other foods on the meal plan. At first I thought it was a fluke but then I noticed it happened again and then again....and then again. WOW! Click! Click! Click! Bam! It all came together. I looked on the package and saw it was the only item made with flour and durum flour. Another of the items I also had a mild reaction to and it had yeast in it.
- Suddenly, the idea of gluten intolerance starts to take root in my head. I didn't know much about it but I work in a place where information is at my finger tips. I looked up everything there was on gluten intolerance and found myself looking at Celiacs.
- I decided to try just a gluten free diet. I got off the other diet b/c though I felt better on it for the most part I was still tired all the time b/c of the low cal.
- My husband was very relieved to see me off the other diet. When I explain my suspicions he had a light bulb moment too and he literally ran out to the store and bought every gluten free item he could find. He is so incredibly sweet. He has also made it his mission to find different foods that are gluten free that are not only favorites but can so be new and exciting things to try.
- I suspect Celiac is what my Grandma had for a lot of years but she was told it was IBS or her diet, it was shingles when it was probably just HD.... she tried Beano, Lactaid, a soy protiens (which did work to a degree). She was overweight most of her life. She lost weight after my grandfather died and b/c she didn't eat as much she felt better...that comfort from her discomfort ended when she had hip surgery. Poor thing was miserable from going from constipation to D. It is horrifying when you can't take care of yourself like she couldn't. Poor Grandma.
So I have been gluten free for almost two months. I feel better than I have in a what feels like a long time. People are starting to notice too. I've heard that I look better and act better...well, I feel better so I'm sure it shows. I'm less concerned with weight loss as I am with living healthy.
I haven't gone to a doctor. I'm afraid that they will tell me it's in my head, not real or that I need to go on a gluten challenge in order to prove it...which I won't do. Gluten = pain for me and I don't willing put myself through pain just to prove a point.
It's been a real learning curve trying to figure out all the different names for gluten. I've run into a few accidental exposures and a one where I ate cake (because I still doubt myself about what I think it is) but man I paid for that for about 3 days.
So there is my story. So it was so long.