Sick Of Being "sick"

[Tutti Frutti]

Hi everyone,

I have been reading your posts and have found them to be very helpful. Right now I am experiencing what many of you have gone through. I feel so depressed because everyone is acting like my symptoms are all in my head. I don't have anyone else to talk to about this. I am desperate for some advice. Yesterday I felt like I couldn't take my symptoms any more so I made an appointment to be seen at my university's clinic.

This morning I was seen by a doctor, I tried to tell her all of my symptoms but she simply would cut me off, say that they weren't relevant and that I needed to make separate appointments for each of the symptoms. After examining my bum/colon she referred me to a "specialist". She didn't provide me with any information, I had to Google information on the referral to figure out that my stool tested positive for blood and that my bum was sore.

I have hemorrhoids from years of being constipated/diarrhea. I have had digestive problems my entire life along with Chancer sores, sudden fevers, itchy/dry skin and fatigue, ADHD. I have many allergies, including dairy and soy.

I finally made my appointment because: I eliminated gluten from my diet and I was feeling ALIVE! Then I got takeout from my favorite restaurant (I thought that they would be safe. After that my symptoms came back.

I am anemic (have been since I was diagnosed 11 yrs ago)

I only weigh 121 lbs.. I was never this light, not even when I played sports in HS (even women's weightlifting). I always wanted to be slimmer but I love food and being active. I am 5'5 my healthy weight would vary from 135-150,at one point I weighed 168. Now, everyone thinks that I have an eating disorder. Last November my thick hair began to fall out. My boobs shrunk, leg muscles are barley there yet I still have a tummy. I am shrinking. My self-esteem is dwindling.

I have always had cold hands and feet that turn bluish purple but they became numb at times. One day I was walking to the library and I felt like my legs were going to give out on me, I couldn't bend my knee to step down without pain... people were staring at me, I probably looked like I crapped my pants! I told the Dr that I concerned because some of my toes were numb, I couldn't sleep or concentrate. I felt anxious and became depressed. My friends from my department stopped talking to me all of a sudden...I was being avoided, they thought that I was nuts.

Now I am taking meds for ADHD, Depression and Insomnia...I am seeing a therapist and going to group therapy for the depression. I am sorry this post has become so long. I'll try to make this shorter...After being referred the digestive specialist this morning I was in tears. The specialist disregarded my symptoms and made me feel like I was a insane. The assistants snickering outside of the room. Before eliminating gluten from my diet I kept a food diary, the first thing I noticed was the bread and beer. I had no idea what gluten was. I explained all of this to the specialist. The Dr. just gave me a print out and a discussion about constipation and fiber supplements! Then he said that he wanted to run some tests and do a colonoscopy with sedatives. I am in my 20's and have no family history of cancer or polyps. My mother actually got this same run-around at the same place and ended up with a prescription for her stomach acid, the Dr thought that this was irrelevant. I was so nervous. I only have the basic student insurance, this means that I have to pay a $500 deductible and out of pocket cost after a certain amount. I had many test done in the Fall and the only concern was the anemia. Right now I am just getting by I can't afford anything else...

All I can do is pray and ask for prayers. Any advice would be helpful. Sorry for the long post.

[FooGirlsMom]

Hi,

It sounds like you are having an auto-immune response. I think the biggest factor in your entire story was the part where you said you cut out gluten and you felt amazing. 'Nuff said

You have a decision to make and the right answer is different for everybody. You can go read my medical history on my "About Me" page. I was one of those people who did not have the luxury of medical testing at any point in my adult life when I was having the most severe health problems. Last year, when I finally made the gluten connection after years of living on Atkins to control symptoms, thinking I had a carb problem not a gluten problem, I didn't have any insurance. My husband had just lost his job in June. It was October and I finally had the "aha" moment. My daughter and I both went gluten free and within just 2 weeks I felt different and so did she. Within 3 months I could feel the life pouring back into me.

I think we know our bodies pretty well by a certain point. What I hear most from you is what I was experiencing myself...this feeling like your body is revolting against you and shutting down on you. I went off the Atkins diet in 2008, at a particularly stressful period after my mom had a stroke, and it was only 1 year before I had trouble going up and down stairs. My muscles HURT. They wanted to give out on me. The next year was like hell on earth. I was having heart palpitations, symptoms of vitamin deficiency (despite super dosing), intolerance to heat, neuropathy (tingling) in my lower extremities, chronic fatigue, you name it. I really thought I'd developed Fibromyalgia. By the last summer I was starting to see signs of MS.

The determination you have to make is this...can you cope with being self-diagnosed? In my case, I didn't have a choice. I had to do something. I knew, deep-down, that I was dying and if I didn't do something, I was going to have a heart attack or my thyroid was going to shut down --- something catastrophic was on it's way. I couldn't wait any longer for the money to have a doctor tell me what was wrong with me.

If you can live with self-diagnosis, I suggest you change your diet NOW. It wont' happen overnight but within a few weeks, and then a few months, and then at 6 months (my current milestone), it's amazing how much life can change in such a short time.

It really sounds to me like the antibodies your body makes against the gluten is attacking different parts of your body. You may find that your body even heals from some of it's allergies over time. I was allergic to corn at first. Now I can eat it just fine. I am still allergic to soy , but I think I have been for years and I just didn't realize it. Dairy was a problem for a while, and as long as I don't overindulge I'm ok now. It just takes time for the villi in the intestine to heal.

I hope you find the answers and resolve you are looking for...however that works best for you.

FooGirlsMom

[GFinDC]

You can ask for a celiac antibodies blood panel. That is one test for celiac. I'd think I'd find a different doctor to do it though. Your doc doesn't sound very interested in solving your problems. The antibodie tests are about 70% accurate so there is a chance of false negatives. So it makes sense to give the gluten-free diet a good 3 to 4 month trials to see if it helps your symptoms, even if the test results say you don't have celiac.

You might want to go all the way and get an endoscopy with biopsy to check for villi damage. But the endoscopy is another test which has false negatives sometimes. There are also people with non-celiac gluten intolerance who have reactions to gluten but no villi damage obvious.

None of the testing is any use if you are not routinely eating gluten before hand. The antibodies drop off and don't show up in the blood test, and the intestinal villi may heal enough not to show damage. Most people suggest you should be eating gluten for 3 months prior to the testing. But a few days off gluten is probably not a problem.

The other kind of testing is self testing, or a challenge. If your body reacts with symptoms when you eat gluten then it is probably not a good idea to eat gluten. Regardless of any test results or doctor opinions etc..

[Debbie B in MD]

I really feel for you with all of your symptoms. If you have found that a gluten-free diet helps so much, I would really just keep with it. Especially if insurance is an issue. I am sorry to hear what a bad time you had with that doctor. How ridiculous to make a separate appointment for each symptom. How bizarre. Of course, it depends how important an official diagnosis is to you. I would save you money for buying yourself good food that helps you feel great.

[dilettantesteph]

I was in your shoes. Gluten can make you crazy, or really seem like you are anyway. You don't need anyone's permission to not eat gluten. Some doctors will accept a response to diet diagnosis. You will be able to make more sense talking to them once you get your head straightened out. Just realize that once you stop eating gluten you won't want to go back to it if that is the cause of your problems. Testing involves looking for response to eating gluten. If you aren't eating it your tests will be negative.