Story Of My Diagnosis

[hatchingPhoenix]

A few months back when I was visiting a friend in another state, she was driving me back to the airport for my flight home. We were discussing chronic fatigue, metabolism, diets, etc. I mentioned how I've always been plagued with fatigue and severe drops in energy. In addition, my metabolism has always seemed to be very fast and I don't weigh much. I said to her "I'll bet I'm gluten intolerant.. I mean, it would make sense, since I'm always eating either pizza, chicken parmagiana, chicken sandwiches of all sorts, pasta, bagels, italian bread, subs, salads with extra croutons, french toast or pancakes". She said "Oh I don't think you have that, so I wouldn't worry". It is true, gluten was a heavy factor in every meal I ate.

My visit was sort of like a vacation, but I didn't treat it as such. I currently go to school and I used that vacation as an escape or getaway where I could spend every waking moment just studying, without interruptions or distractions. I chose to do this because "normally", I'd get easily distracted or have difficulty focusing (less like "brain fog", more like A.D.D.). Whenever I was taking a break from studying I researched (on the web via Pocket PC Phone) several symptoms which I was either suffering at the time, always have suffered or suffered once in my life. I've had Seborrheic Dermatitis for a long time and it seemed to only be getting worse, no matter how I treated it. I did not find any connections between that and Gluten or Celiac Disease, but I found connections with other symptoms I've experienced. Researching Celiac Disease, I did not come across this site or many of the other Celiac resources I have found more recently.

I've never had any of the gastro intestinal symptoms related to the disease. The only times I'd ever even get D was occassionally if I ate Taco Bell, or the one time I had to clean out pre-colonoscopy 6 years ago. Regardless, I made it a point to have a physical immediately and discuss my concerns with my physician. We sat down and I spilled/dumped a list of symptoms. Anything & everything I could think of. He said "Well we're gonna do a full physical and some blood tests, and we're gonna see if we can get to the bottom of this". I said "Is it possible to include a Celiac panel done?" and he replied "Yeah, we're going to include gluten and several other tests", as if it was already on his agenda! Well, everything in the physical showed that I'm a perfectly healthy individual.

A week later I got the the first half of my blood results and wouldn't you know it was positive for you know what. Another week and they got the remaining results, they then recommended I see my Gastroenterologist immediately and asked for his fax # so they could send him the results. I did not waste any time, infact I started going gluten-free that very night I got the first half of the results.

I did an intense 3 week cleansing with little to no sugar, no yeast, just bare essentials. All I drank was Fiji water. In the fourth week, I slowly introduced all of the rest. All I still drink today is Fiji water.

My Gastroenterologist was extremely prompt in calling me upon receiving the results. He asked how I'm doing, if I'm eating gluten-free and if I have yet noticed any improvements. When I went in for my appointment, he asked if I'm sticking to the diet and I said "For about 3 weeks now ". He was impressed and said that I ought to be commended for sticking to it the way I have. He took additional tests and said they would likely show up negative since I've been gluten-free for this long. When I sat down with him we went over a bunch of things and I asked plenty of questions. He recommended that I have my bone density checked. I started to ask "Oh, where.." and he said "We can do that here." and he asked if I wanted to have it done now or at a later date, I said "Now please!!@#(*&".

Well, the technician who did the actual procedure had this look on his face afterwards, it was slightly akward. After he did the report he looked very down and sad compared to before the procedure. I sat down with my Gastroenterologist again afterwards and he said "Well, it looks like your bones are very weak and you have Osteoporoses in your spine and hips". I said, "Well is that normal for me to get it at this age?" (I'm only 26) and he explained that it is common with Celiac Disease. I asked "So what does that mean?" and he said "It means that your Celiac Disease is worse than we think". When I made my co-payment the, the receipt said "Diagnosis: Adult Celiac Disease, Osteoporoses". I guess that means I'm doomed with insurance companies from that point forward?

A week later, I had an Upper Endoscopy with him (biopsy: normal) and it is a good thing they have an Anesthesiologist now, because 6 years ago, I'm sure they could hear me from 32nd to Times Square.

I have been gluten-free for 3 days short of 2 months now, but there are new aspects to this lifestyle which I learn everyday. I actually enjoy it, because I'd rather live a healthy life. I'm excellent in the kitchen (and always have been.. even in Home Ec class in Middle School, girls used to tease me about that often), so I cook & prepare one-time meals 2-3 times a day (leftovers scare me). However, moving forward with other things in my life is something that has been slowed down, and I guess is to be expected. It is not as if I have a full-time job to simply commute to/from everyday. I'm finishing up a very intense degree right now and then I must find my niche career-wise, or even where I want to move to/live. Does this take getting used to? I see plenty of stories about people who carry on like nothing ever happened, but they either are already settled and have a job/career and/or husband/wife/children who assist in the process. Less for instance, students prepping for something like a Doctorate. Ah, whatever, I guess I shouldn't get discouraged about it. I was on pace to finishing up my academics in record time, not that I was rushing, but I have a passion for my studies. Now, it looks like gluten is going to push me a little closer to the average student.

I talked to mentioned friend a few weeks later I told her that I was Dx'd and she said "Wow, you must know your body really well". It's almost as if that trip was a trip to "find the answer" or to "become enlightened and learn about self" or the beginning of a new chapter, even book. I feel much better off of gluten. I wakeup with energy in the morning. The fatigue that I would feel in the middle or end of the day (which I thought was something every human being experienced) is almost completely gone. I foresee myself even feeling much better than I do now. Oh, and now that I know Sebborrheic Dermatitis happens with compromised immune systems, having this auto immune disease could very well be the reason I got it in the first place.

[Fiddle-Faddle]

Welcome aboard, Hatching Phoenix! Great story. Lucky you to get diagnosed so quickly (and sounds like you have decent medical care)!

I'm curious about your name--are you a Phoenix fan? Or a Harry Potter fan?

[hatchingPhoenix]

Welcome aboard, Hatching Phoenix! Great story. Lucky you to get diagnosed so quickly (and sounds like you have decent medical care)!

I'm curious about your name--are you a Phoenix fan? Or a Harry Potter fan?

Thanks! I went in with some knowledge already and that helped. I am thankful that I didn't have any problems with my doctors. I did get diagnosed rather quickly, however I am not so sure that I caught it quickly.

p.s. : phoenix in the mythological sense.

[CarlaB]

Welcome!

[elisabet]

Welcome aboard.It is a wonderful group,with many knowledgable nice people.

[Ursa Major]

Hi Phoenix, and welcome to this board. I am glad you have been diagnosed this young, but it isn't too great that you already have osteoporosis. Have you been tested for your levels of vitamin D, K, ferritin (stored iron), calcium and magnesium, and vitamin B12? Those are often low in people with celiac disease. And since you have osteoporosis, calcium, magnesium and vitamin D are very important to supplement with, if you are low in those (you probably are, of course). You need to know how low they are, to know how high a dose you need of those every day to halt, and possibly reverse, the celiac disease.

It seems only people with celiac disease get osteoporosis that young, and men generally don't get it, unless they have celiac disease. Most people that have osteoporosis are over 50. Strangely, when my bone density was checked, my bones were great (since I didn't figure out about the celiac disease until last year at the age of 52, I was very worried).

Don't get yourself put on medicine to help with the celiac disease. Those are known to have bad side effects, and weaken the bones more over the long run. The reason is, that while they seem to help with bone density, they are in reality holding onto old cells (your bones usually get renewed quickly), which weakens the bone structure, even though they look denser on the scan. Plus, they can cause necrosis of the jaw, which is a terrible thing to happen to anybody.

Making sure your vitamin D levels are where they should be, and supplementing with calcium and even more importantly, magnesium as well as eating healthy and gluten-free, your osteoporosis might reverse and your bones become stronger. The younger people are when diagnosed, the more likely it is that will happen.

[ravenwoodglass]

Thanks! I went in with some knowledge already and that helped. I am thankful that I didn't have any problems with my doctors. I did get diagnosed rather quickly, however I am not so sure that I caught it quickly.

p.s. : phoenix in the mythological sense.

Hi welcome to the boards, I am glad you are adjusting well. Your rise from the ashes appears to be well on it's way to success. Your name is so appropriate for a newly diagnosed celiac that I wish I had thought of it first.

[hatchingPhoenix]

Hi Phoenix, and welcome to this board. I am glad you have been diagnosed this young, but it isn't too great that you already have osteoporosis. Have you been tested for your levels of vitamin D, K, ferritin (stored iron), calcium and magnesium, and vitamin B12? Those are often low in people with celiac disease. And since you have osteoporosis, calcium, magnesium and vitamin D are very important to supplement with, if you are low in those (you probably are, of course). You need to know how low they are, to know how high a dose you need of those every day to halt, and possibly reverse, the celiac disease.

Thanks for the reply. I have already had my B-12 checked, but which doctor can I go to for the others which you have mentioned? I was referred by my Gastroenterologist to an Endocrinologist who I will be seeing very soon.

[Ursa Major]

Thanks for the reply. I have already had my B-12 checked, but which doctor can I go to for the others which you have mentioned? I was referred by my Gastroenterologist to an Endocrinologist who I will be seeing very soon.

Your family doctor should test you for all these, mine did.

[Guest Robbin]

Welcome and thank you for sharing your story. You are very fortunate to have found a good dr. and to have a dx while you are young. Just think what would have happened if you hadn't figured this out until you had your degree, was employed and major illnesses forced you to give up the career you are persuing? (quite admirably, I might add) How rotten would that have been? It has happened to many on here. Imho, someone is watching out for you up there ! Take care and look forward to hearing more from you.