Just Diagnosed/ My Story

[DonaldandAlanda Evans]

Hello everyone,

I've recently been diagnosed with Celiac disease after at least ten years of being sick. It all started when I was 16 and I got mono and never felt the same since. I was always fatigued, had bags under my eyes, pale skin and a few other weird symptoms. I was convinced I had HIV for some reason even though I was not part of a high risk group. Due to my fear of doctors I never sought out help until recently. I was in a motorcycle accident about 6 months ago that was pretty bad but I refused medical attention. A few weeks later I started getting pressure on the sides of low back in my kidney area that later spread to my abdominal area. I felt as if gas was trapped in my intestines and it was pushing into my back. I then started having very loose tan coloured stool and started losing weight. I freaked out having no idea what was wrong with me and wound up in the ER 8 times in 2 months. My anxiety was through the roof and all of the ER doctors told me nothing was wrong with me. I couldn't deal with it anymore. I had a complete breakdown that landed me in the psych ward twice for a total of 14 days. I was told I was a hypochondriac and got hooked on Ativan because it was the only thing that calmed my anxiety and also took away the tension in my back/stomach. I was convinced I had everything under the sun (HIV, TB, Brain cancer, spinal cancer, colon cancer ect...) My wife was convinced I had Celiac Disease and made me an appointment with a family doctor (my first in 11 years) My father could tell I was having a hard time so he flew in from his winter home in Tucson AZ to make sure I was alright. He went with me to my first doctors appointment and I didn't even bring up Celiac to my doctor. All I could think about was brain cancer or MS so she ordered an MRI. It came back negative and she said everything was in my head, then gave me paxil(now off all anxiety/depression meds). She also told me to get off the Ativan (hardest thing I've ever done) My father was convinced I was imagining everything as well and flew back home. My mother then flew in from her winter home in Mexico because she believed me and wanted to help. She was also convinced in was Celiac because her and my sister both have hashimotos and her mother had MS. My doctor ordered tons of tests (to make me happy she said) she ordered an abdominal CT scan, abdominal ultra sound, upper GI scan, low back x-ray, CBC (my fifth in 6 months) Liver function (also my fifth) C reactive protein, Lipase, Amylase, Complete thyroid panel and antigliadin IGA and IGG. I called my doctor to get the results and she said that something was abnormal and wanted me to come in. I asked witch and she said the antigliadin ( I was ecstatic that she may have found something) I went in and she explained that every test was normal except the antigliadin IGG was a 64 and IGA was a 34. She then went on to eplain Celiac disease to me (everything I had already researched) She wanted to order a few more blood tests (endomysial and a lactose test and antigliadin again) I then asked about my liver enzymes and she looked it up and they were elevated, one was 4x's normal and the other was 2x's so she ordered a feretin test for hemochromotosis and a hepatitis panel ( both were normal but freaked me out, my enzymes were also almost back to normal) I went in a few weeks ago to follow up on the other tests and I was posative for the endomysial antibodies and the antigliadin was still positive. She left it up to me if I wanted a biopsy witch I declined along with a bone scan. She thought it was good that I declined and diagnosed me with Celiac Disease and told me to go gluten free and she would check my levels again in 3 months (she had me do a TTG test that day for that and also tested vitamin levels) She also referred me to a dietitian whom I have not seen yet. Its been a few weeks and at first I felt great and still feel like I'm improving but I'm still really scared. Is it common for people newly diagnosed to think that it must be something else? I find myself analyzing every little symptom. I also keep analyzing every test I've had done. Shouldn't my C reactive protein have been elevated or what about my lipase and amylase or ferretin? I keep getting really dull pain in both of my legs, is that normal? I've been taking calcium, a multivitamin, b12 and probiotics daily (all gluten free) I've also been getting mid back pain and numb finger and toes. All of this really freaks me out and I just want to feel better and stop worrying!

[Wolicki]

Wow. You've been through the wringer, haven't you? Well, the good news is you have a diagnosis and you're now on the road to recovery.

The symptoms you have now are common in Celiac. I had many of those crop up after going gluten free. You might benefit from a magnesium supplement for the aches and pains. I got terrible neuropathy, and extra doses of sublingual b12 took care of that.

CReactive Protein is not necessarily elevated in celiac. It can be a sign of inflammation or of heart issues. So, it's not elevated, don't worry

You have to remember that you were ill for a long time, and it will take some time to heal. Stay gluten free, check everything for gluten: scrips, toothpaste, hand lotion, etc. Don't eat out for a while. Keep a food diary to see if you are having reactions to any other foods, which is common in the beginning.

Try to stay calm You're on the right road.

[Beccels]

Hi Donald,

I wanted to share a bit of my story with you, I really understand how you feel.

I am currently 29. When I was 17, I started to experience really strange neurological symptoms. I couldn't describe them, it was more than distressing. It impacted my ability to work and function on any normal level.

I spent about 7 years being stupid and taking what Dr's said at face value. They would tell me I am having panic attacks and tell me to see a shrink. I would see a shrink, take anti-depressants - and still be in the same situation.

Over the years, its dipped really really badly three times. To the point I would sit in the fetal position on the lounge. To scared to go to the toilet. Just being awake was distressing.

I ended up having a seizure about 4 years ago. Enough was enough. A few months after the seizure I slipped in to the third bad dip. I was, a mess. A total mess. Just a shell of a human being.

I wont go in to all the small details, but I was treated really badly by Drs. Mainly, top Neurologists in Sydney (Australia). It was one local GP who decided to give me a go on a abortive migraine medication. Within 2 weeks, it was gone. I still remember that moment, of realizing that this had worked - that was the best moment of my life, close second was getting married! hahahah!

So we narrowed it down - I don't get any sort of typical migraine. its actually 'prolonged aura ('derealization') with out infraction'.

Now the problem has come about that we want to have a baby, but i can't off my meds as everything comes straight back. And I can't be on my meds if we want to conceive.

My GP has decided she is sick of treating the symptoms and started looking for the cause. She put me on a dairy, wheat and gluten free diet about 5 weeks ago - and discovered I have the celiac gene. We aren't sure if I am actually gluten sensitive at this stage, but things are going really really well with the diet. I also discovered my aunty on my dad side has the gene and she gets typical migraines!

The moral of my story is, its human nature to want to rationalize things. And people will tell you to stop it! BUT .. you have been through an awful thing. You want to understand what is happening to you and why. You are now aware of these things happening and its only natural for you to go in over drive sorting it out and making sense of it.

I was very similar to you, I was convinced I was dead or at least dying. Its normal to become extremely anxious and over sensitive to what is going on. I think, as you get healthier ... and stronger you will feel more in control of the situation and your anxiety will drop as well.

Pain and weirdness in your body when you are detoxing, which you effectively are - is super super normal. My feet were initially so sore when I started the diet. So sore I couldn't sleep. I had no idea it was related but apparently it is! It vanished after a while.

Personally, I have been seeing my Dr once a week while I started off. Now that I have more control and have got through the really tough part I am seeing her twice a week. Each time a question or concern comes to mind, I write it down and ask her. She answers my every single question and my anxiety gets less and less each week.

Maybe it might be a good idea to see your Dr a bit more frequently while you are still in the initial stages.

Sorry for the super long reply! I hope it helps a little bit. I really understand how you feel.

[mushroom]

Hello, Donald, and welcome to the recovery room!!

You must feel very relieved to know that there was a real reason for all those problems you were having, and not the ones that other people were imagining. And, it is a disease for which the cure lies in what you eat. Now how good is that? Yes, I know you are still anxious and worried, but you were a long time sick, and you are still very early in recovery. Be patient with yourself and try to relax and rest and let your body heal. You will experience lots of little ups and downs through this recovery period, and it is perfectly normal, we all do. Try not to treat every little down as a big worry because it is probably going to be gone by next week, or the next. As for what symptoms or test results you should have had, there is no standard for celiac disease, which is why it is so difficult to diagnose sometimes. Every person has different symptoms, different reactions, different test results, different healing times. You are you and yours will be unique to you. So worry less and relax more and you will feel much better I can assure you.

Good luck on your healing journey.

[jackay]

I sympathize with you. I have been going through somewhat of a similar problem. Four or five years ago I started out with severe headaches and super high blood pressure. I tried so many medications for migraines and nothing helped. I finally tried a muscle relaxant that caused severe depression and anxiety. I did get some relief from my headache though. I didn't get any relief from medications for anxiety or depression.

Severe back pain developed. I went through a course of physical therapy for that which only made it worse. I saw a specialist for that who said it was myofacscial pain and to learn to live with it.

I ended up hospitalized a couple times for the anxiety and depression. That didn't do anything to help. It did keep me from ending it all. Still tried to find a medication to work. Spent lots of money on counseling and didn't get any relief from talking it out.

I always felt that it had to be something I ate or something in the environment that was causing my problems. I finally found a doctor who feels there is a reason for my symptoms. Lots of tests which finally found gluten intolerance. Unfortunately, I am intolerant to many, many other foods. I think I may be reacting to foods that tested as being acceptable.

Once I gave up gluten, my anxiety diminished. I still get some headaches, but not as often and not nearly as bad as they were years ago. As far as my back pain goes, some days it is worse than others, but again it is much better than it was before going gluten free. I also had severe diarrhea which has gotten so much better. Whenever it reoccurs, I am pretty sure I'm getting glutened. Luckily, it only takes a day or so to get over it.

The one continuing problem I have is insomnia. I just can't get a decent amount of sleep no matter what I try. The only nutrient I tested low on is Vitamin B12 so I supplement with that at bedtime. I also take calcium, magnesium, probiotics and Vitamin D3.

It is not easy, but looking back to where I was months ago, I am a lot healthier. I'm still struggling to gain weight (and sleep) but right now I know I'm not consuming enough to gain.

Best of luck. Keep us posted as to how you are doing.

[Reba32]

as everyone else has detailed quite a lot on the don't worry so much bit, I will add that sometimes leg and extremities pain can be caused by electrolyte imbalance, and can usually be "cured" simply by making sure you get enough salt and potassium in your diet.

One of the main things that we first give up is packaged foods. Packaged foods is where most of the Westernized diet gets our sodium (usually about 1000% more than we actually need!). So if you've given up packaged and manuafactured foods for a whole foods diet, and if you don't salt your food to taste, then you could be sodium deficient. Potassium deficient can also cause leg cramps (the dreaded "restless leg syndrome!"). Half an avocado a day can handily rectify that situation! :-)

Hang in there, it does get better!

[DonaldandAlanda Evans]

Thanks everyone for the replies. I woke up this morning feeling pretty good. I even went outside with my dogs for a bit. Around 8pm I started feeling bad again and had to lay down......but at least I had a good morning/afternoon!