Does It Sound Like celiac disease?

[Julie0513]

Hi! I am brand new to this forum and was looking for insight from anyone who could help.

I am a 32 year old mother of 3. I started to develop problems in 2004. Without going into too much detail, I am going to try and give you a quick run down of my symptoms.

In 2004, I developed inflammation in my carotid artery which was extremely painful. Went on predisone and it took care of it. Doctor ordered ANA blood test which came back positive (1:640) and sedrate of 44 and suggested I see a Rheumatologist. I blew it off because I felt fine and had no other symptoms.

Starting in December 2005, I developed chronic neck pain which where giving me horrible back of the head headaches. I still have them today...EVERY SINGLE DAY. I can hear my heart beat in my ears. I am extremely fatigued and could literally go to sleep anytime of the day. I started going to a Chiroprator which did not help. Several times a year, I still developed inflammation in my carotid artery.

I started going to a Rheumatologist because I developed severe sun sensitivity as well as Ryanauds. The Rheumy basically told me after several visits that I have markers for an Autoimmune disorder, but not enough to diagnose me. Meanwhile I am still having these headaches everyday which are debilitating.

This year has been the WORST EVER!!! Along with still having every symptom above...I now have chronic constipation and /or diarrea. But I do go to the bathroom 2-3 per week, sometimes with assistance of suppositories. I have lost 20 lbs since July of 2006. I am 5'4" and weigh 90 lbs. My normal weight is 110 lbs. I started to lose some eyesight 3 weeks ago and now have to wear glasses. Also I feel weak,shaky and dizzy. My right arm and leg goes numb often. My family believes that I have anorexia-which is COMPLETELY UNTRUE!!!! I eat anything and everything I want and have never worried about my weight. I went to the doc last week who tested me for anemia and came back positive. I ended up in the hospital all weekend do to chest pressure. Lungs, gallbladder, kidneys and liver were normal after ultrasound, but was having an irregular heartbeat.

I started going to a neurologist. I have had MRI/MRA of brain...normal, MRI of spine and neck...normal.

I am completely DONE! I am so tired of doctors saying "we know something is wrong, and you have markers...but we don't know what it is". I feel like crap everyday and I think my husband thinks I'm a hypochondriac. Nobody understands how I feel and what I have to deal with. I have 3 kids and I feel so guilty because of what is going on and unable to have the energy to do what they want.

Does this sound familiar at all to anyone? Could I possibly have celiac disease and get a test done? I have a doctor appt tomorrow and was wondering if I should bring up getting tested for this. Anyone who could help I would so much appreciate it.

Thank you!

[tom]

Sounds like me at one point.

If it IS celiac and u keep eating the same old way, it'll get a *lot* worse.

So find out.

Schedule the biopsy and bloodtest and hopefully the appt isn't too far out, as the doc will insist u don't go gluten-free before the tests.

Others, feeling less need to convince the doc (and health insurance co. etc), go gluten-free as a test. And casein-free(dairy) - do both.

I ended up having to go on a strict anti-candida diet also before I began bouncing out of bed w/ a smile, previously not done since childhood.

Best of luck - these forums are a great place of help & support.

[CarlaB]

I would get tested while you're still eating gluten. It's a blood test, then a biopsy.

You might also look into Lyme Disease (symptoms are on Open Original Shared Link, testing by Open Original Shared Link).

[mftnchn]

I think Carla meant get tested before going gluten-free. I second that! But if your tests are not positive, still give the diet a try. There are many here who improve on the diet even though they don't test positive.

[SunnyDyRain]

If I were you, I'd demand them to test you for Celiac. I had to demand that I get tested. I got a positive blood test, I felt no need to do a biopsy.

I wish you luck and hope you can get some relief.

[Julie0513]

  Julie0513 said:

Hi! I am brand new to this forum and was looking for insight from anyone who could help.

I am a 32 year old mother of 3. I started to develop problems in 2004. Without going into too much detail, I am going to try and give you a quick run down of my symptoms.

In 2004, I developed inflammation in my carotid artery which was extremely painful. Went on predisone and it took care of it. Doctor ordered ANA blood test which came back positive (1:640) and sedrate of 44 and suggested I see a Rheumatologist. I blew it off because I felt fine and had no other symptoms.

Starting in December 2005, I developed chronic neck pain which where giving me horrible back of the head headaches. I still have them today...EVERY SINGLE DAY. I can hear my heart beat in my ears. I am extremely fatigued and could literally go to sleep anytime of the day. I started going to a Chiroprator which did not help. Several times a year, I still developed inflammation in my carotid artery.

I started going to a Rheumatologist because I developed severe sun sensitivity as well as Ryanauds. The Rheumy basically told me after several visits that I have markers for an Autoimmune disorder, but not enough to diagnose me. Meanwhile I am still having these headaches everyday which are debilitating.

This year has been the WORST EVER!!! Along with still having every symptom above...I now have chronic constipation and /or diarrea. But I do go to the bathroom 2-3 per week, sometimes with assistance of suppositories. I have lost 20 lbs since July of 2006. I am 5'4" and weigh 90 lbs. My normal weight is 110 lbs. I started to lose some eyesight 3 weeks ago and now have to wear glasses. Also I feel weak,shaky and dizzy. My right arm and leg goes numb often. My family believes that I have anorexia-which is COMPLETELY UNTRUE!!!! I eat anything and everything I want and have never worried about my weight. I went to the doc last week who tested me for anemia and came back positive. I ended up in the hospital all weekend do to chest pressure. Lungs, gallbladder, kidneys and liver were normal after ultrasound, but was having an irregular heartbeat.

I started going to a neurologist. I have had MRI/MRA of brain...normal, MRI of spine and neck...normal.

I am completely DONE! I am so tired of doctors saying "we know something is wrong, and you have markers...but we don't know what it is". I feel like crap everyday and I think my husband thinks I'm a hypochondriac. Nobody understands how I feel and what I have to deal with. I have 3 kids and I feel so guilty because of what is going on and unable to have the energy to do what they want.

Does this sound familiar at all to anyone? Could I possibly have celiac disease and get a test done? I have a doctor appt tomorrow and was wondering if I should bring up getting tested for this. Anyone who could help I would so much appreciate it.

Thank you!

[Julie0513]

Thank you everyone for your reply! I really appreciate it! I am going to the doctor tomorrow, so I will tell him I need to be tested.

Thanks again!

[Alephus]

Hi, Am New Also and very happy I found this forum.

I was unaware there was a name for my disorder, I have probably 90% of the symptoms described as siliac , I just discovered that today, so does my mother.

I have to read more to see how I change my diet, anyone know doctors in Miami Fla that treat this disease ?.

I read somewhere About Sunkist diet not being gluten-free ?

Let me give you a short story on Diet Sunkist, about a month ago , i started drinking the diet sunkist because it said sugar free, I went into an Insulin resistance mode, no matter how much insulin I pump, my sugar remained way high, while I kept drinking the sunkist.

My doctor was going nuts with my sugar problem and kidneys failing, and me sleeping 18 hours a day.

Then My wife said ,maybe is the sunkist ? I said it is sugar free" Until I read the label that says modified corn starch, well corn starch is one step away from being glucose, how can these manufacturers of sodas get away with stuff like that and call it diet soda ?

It almost killed me ! and I spent thousands of dollars in treatment since i don't have health insurance because am a diabetic.

If you have had similar experience with diet sunkist please write to me.

what kind of bread can one eat with siliac disease ?

[Annaem]

I also had a high ANA and markers for auto immune disease which they discovered when i was 17 years old. I had some joint pain so i went ot a Rheumatologist. But they were unable to diagnose me with anything. As the years went on, my stomach started to give me some troubles. I found out 3 years ago i have Celiac Disease. My G.I. says that celiacs often have high ANA's but they don't know much more than that. Someone else in my family developed Fiber myalgia which has improved greatly since being on a gluten free diet. She too was diagnosed after soooo many years of joint pains and unusual symptoms with Celiac Disease. Check out ENterolab for gene test. It will give you something to show your dr. at least since they never do the blood test properly. There are 3 blood tests that should be done not just the 2 . This rules out the false negatives etc...