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Very Ill. Pls Read My Story (Long)

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Thank you so much for reading my story. I have been suffering for the last 7 months and continue suffer. Let me start at the beginning.

I'm 22 years old, never exactly lead a healthy lifestyle. I've never

been a good cook (last time I cooked I gave myself food poisioning). More often than not I would eat out. Doesn't help that I work at a resturant! Never really exercised as much as I should and I don't have a regular eating schedule.

I've always dealt with mild digestive issues. Stomach irritation

after eating anything dairy and constipation during that lovely time

of the month. I also used to have this thing where I would not want to

go number TWO in public. I would just hold it until I got home. Soon as I got home, that washroom better be free! Not a smart idea in hindsight. I would also experience severe lower abdominal pain, that would last no more than 30 seconds. I've been experiencing the pain for as long as I can remember. Never went to the doctor for it. I just put it down to all those years of good (not good) living!

I can even remember the date (April 10-11th). I had just got home from my friends birthday party at Midieval Times. It was late at night and I was preparing to go to bed. All of a sudden I had an anxiety attack. I've never had one in my entire life, up until that point. My heart was racing and I couldn't breathe. I called an ambulance, they came and took me to the hospital. They took my blood pressure and asked me questions like; if I was suicidal or hurt myself in the past, of course not. They did absolutely nothing for me. I literally sat in the waiting room for 2 hours. I finally asked if I was going to get any help and the man at the desk pointed at the phone. I just left, went home and climbed into my warm bed.

About 2 days later, I woke up to severe pain near my breast bone and

to the left side. I didnt think anything of it. I thought I was paying

the price for being such a late night eater but i couldn't stop

shivering. Maybe I had food poisoning..again? I drank some peto bismol and tried to go back to sleep.

I woke up later that afternoon and felt awful. I thought it was the

stomach flu. I was shaking, weak, couldn't sleep, had no apetite. I

barely had enough strength to shower myself. I've had food poisoning

before, like I stated but never like this. I went to two walk in

clinics, they wouldn't accept me. So I had to go to the ER. They took

my blood and my urine. I was told by the doc that everything looked

relatively normal. I was just fighting off a virus and dehydrated.

There was nothing they could real do for a stomach virus. I was given

a concoction of medications that made my throat numb. Was told to eat a lot of yoghurt, bland food and to get a lot of rest.

**I'm pretty positive that this is related. Within that time frame, I

remember getting very ill after eating at a resturant. I had ordered a

16oz steak and mashed potatos. The steak tasted a bit funny and mashed

potatos tasted kinda sour but I still ate it ( how dumb am I?) I just

can't pin point if it was before or after i had the anxiety attack.

Whatever day that was, the following morning I was so nausea! I

literally had to make myself vomit, to feel better. It was anywhere

between April 1st - 13th.**

After returning from the ER, I took some medication and went to bed. The next day I was still sick. I woke up to this tingling sensation going all throughout my body. It was like a body buzz. My legs also seemed to have a mind of it's own. They were very restless. It was like I was playing soccer in bed or something! I also started to have muscle twitching going up and down my legs. That's pretty much what I dealt with for the two weeks that followed;

Stomach aches


Back pain (in between shoulderblades and to the left)


Excruciating headaches

Lower burning back pain (could barely walk due to that pain)

muscle twitching

I had been going one hospital, that was closest to me. I was treated like absolute dirt. I was told at one point that i needed to see a psyciatrist. I decided that I would never to go to that hospital again. I went to another hospital where they took the time to draw blood, take x rays and do an ultrasound of my abdomin. The results of the xray were normal. Ultrasound also came back normal. Stomach, liver, kidneys and

gallbladder were all clear. The ER doctor stated that the only thing

was that I was extremely constipated. He gave me a presciption for a

natural laxative. Tried it out but to no effect. About no more than 3

days later I was on route to my family physican, when I started to have pain in my abdominal area so bad, I thought I was going to pass

out. The pain was so bad, I felt like I couldn't breathe. We went to

the nearest hospital. They took blood, urine and xrays. I was told by

the doctor (who was heaven sent!) that I was extremely back up and

very dehydrated. I must have bought the entire digestive aid aisle

that night at the local drug store. I took some of them and got re-aquianted with the toilet. The next day I felt great. Had breakfast for the first time in a long while. I thought that life was back to normal. Jumped the gun I guess.

That night I couldn't go to sleep. I kept on being jerked out of my

sleep. The muscle twitching had made it's way to my arms and

shoulderblades. The headaches started to come back with a vengenace.

All I could do was cry. I'd wake up most mornings to internal tremors.

It felt like my body was shaking but from the inside. It would go away

after a couple minutes. It felt like a vibrator was inside of my body!

Every doctor I went to said that it was either the stomach flu, stress

or anxiety.

For the next few days, I would wake up to sweating around my neck, a

tight chest and very bad muscle cramps/twitching. I thought what I

may have might be neurological. By this time it's now late April-

early may. I went to the local walk in clinic and explained to the

doctor what was going on. He couldn't really care less. He basically

said that i was make myself sick. "Your mind is sick." he said that I

needed to lose some weight (I don't deny that). He didn't even bother to look at my file. He did some blood work for vitamin deficiencies,

chest xray, breathing test and gave me a prescription for Ativan. I went back that following Wednesday. Everything was in normal range. My b12 and thyroid were fine. Also tested negative for Lyme disease. My iron was a bit low, that was about it. I had mentioned MS or possibly even ALS. That was a huge mistake. That

proved even more to him that I was mentally ill.

The internal tremors, muscle twitching, aching and back pain

continued. I then began to have problems with my sinuses. I felt a lot

of pressure in my head. My legs started to jerk involuntarially. I

had what felt like electrical zap sensations in my head, that once woke

me right out my sleep. It felt like the right side of my head was

splitting from my left.

Mid May I went back to the same walk in clinic and had xrays

taken of my entire spine. I got a call the next day to come in for the

results. I found out that I had C3-C5 forminal stenosis. I also had

early signs of L5 S1 disc degeneration. That was a bit disconcerting.

My sinuses were surprisingly fine. They told me that fixing my posture

and losing weight would take the pressure off my spine. Now the

electric shock made it's way to my right leg. It felt like a

lighting bolt went right through it. That leg had also started to

pulsate. My right calf was starting to feel stiff.

My birthday (May 15th) came and went. Spent most of that day in bed.

The headache started to get worse and even more frequent then before.

I would count my luck stars when I would just have a mild headache.

Sometimes I felt like a liquid sensation was inside my forehead

(sounds strange, I know). I thought it was my sinus but that was

clear. Breathing started to feel a bit difficult. I actually had to

think about breathing in and out. It was like it was no longer second

nature. Breathing felt difficult especially when I would lay down on

my back or side. I was also extremely sleep deprived. I was lucky to

get more than 3 hours of sleep a day. I would fall asleep and jerk

back out of my sleep. The slightest sound would startle the hell out

of me. Especially at night. Even the sound of my voice would make my

heart skip a beat. I thought that maybe i was losing my mind. I had a

CT scan done of my brain (no contrast). That came back normal. That

was a relief. No brain tumor or bleed, but I was still sick as a dog.

Now, we are into early June. Headaches, aching muscles, fatigue and

twitching (now more widespread) continued. My face was now tingling

and I was off balanced and dizzy. I made an appointment with an

orthopedic doctor. Did nothing for me. He seemed like he was in a rush.

Told me that what I had was paresthesia of the face. He told me to do

some light exercises to relieve the stress on my back. I felt like I

had wasted my time. A couple days later I decided to see another walk

in doctor and see about adding some vitamins to my diet. She suggested

magnesium and vitamin d for twitching. Also a vitamin B complex. I

took them for a couple of weeks (not as religously as I should) and

had no results. I had looked up magnesium deficiency symptoms and felt like it all fit me to a tee. Magnesium deficiency can cause a wide arrange of problems including anything from muscle twitching and aching to noise sensitivity and even an electrical shock feeling. I went to my local health food store and bought a better brand of magnesium. I took it for about a week and felt no difference. This might sound funny ( you can laugh) but when I would take my vitamin b complex and magnesium, my dreams started to become more vivid. I could remember everything from my dreams. Most people would find that to be pretty cool. Unfortunately, most of my dreams were nightmares.

Mid June my dad took me to a doctor that he swears by. He did some

neurological tests with me. He tested my strength and tapped my muscles

to see if they twitched. My right palm twitched. He diagnosed me with

myclonus. He told me not to worry. I suggested having an emg done. He

caved and booked me in for one. It was quite painful but worth it. It

came back negative. Which meant that ALS was off the table (thank god)

but I was still suffering. I was in the clear for ALS but the

twitching was now everywhere. My legs, shoulders, temples. Even my

butt, chin and nostrils were not exempt from the twitching. I barely had an appetite and started to have bouts of direaha again (may have been from the magnesium) my hands would shake uncontrolably. Doing simple things like showering would make me so fatigued. Parts of my arm would tingling off and on. My dizziness and facial paresthesia were debilitating and very disconcerting. I had a reoccuring swollen bump in the middle of my neck that would come and go every other

week. Was told by my primary doctor that it was just tissue. Went to

another doctor and told it may be due to dandruff (never head of that,

still haven't).

I took a blood test at the same clinic and was told that my red blood

cells had shrunk. I spoke to the neurologist and asked if some of my

neurological symptoms were due to an iron deficiency. He said yes. It

seemed to me that he just wanted to get me out of his office. The

insomnia continued and when I did go to sleep, I'd wake up every 30

mins to a hour. There was one point where I'd wake up every 10-15


It's now mid July and my sinus were getting worse and I was finding it hard to breathe because of it. My dreams started to become more vivid and more disturbing. I woke up one day with a terrible nose bleed and shortness of breath. I decided to go up to the walk in clinic ( for the millionth time) and try to get some sort of advice. The doctor I spoke to was very nice and listened. She revealed to me that i tested positive for Hpylori (a resistant stomach bacteria) back in April. In a way I was happy. I finally knew what was wrong with me.

I took the 7 day course of antibotics early August. It was a heavy dose of meds but I made it through. The only day I felt good was the second day. Once I got through the course of meds, some of my symptoms went away. The muscle twitching/aching, headaches and tingling went a way for a little while but came back shortly, with a vengence. I tried my best to stay positive. I kept telling myself that the meds needed a little bit more time to take a full effect. I had to wait a month to be re tested. In that time symptoms started to re appear. My sinuses were clogged and painful. I'd have low grade fevers and I was sneezing constantly. I self diagnosed myself with hayfever. In between, I'd have some good days but for the most part I'd would have rather stayed in bed. A month came and went. I took the urea breath test. I had to blow air into a cup. Drink this lemonade-like substance. Wait 30 minutes then blow into another cup. I had to wait a week for the results. While I waited I started to develop what I thought were hives, then they looked more like ance. It was all over my chest and arms and they were so unbareable itchy. I still have the scars all over my chest and arms from scratching them

In August I also had a MRI done (without contrast). Results also came back normal. No lesions or any type of damage. I took MS off the table when I got back that result.

I actually had to wait two weeks to get my H pylori test results. I

ended up testing negative for the bacteria. I was a little

disappointed. I had taken this brutal amount of meds, waited a whole

month to get re tested and I still feel as sick as a dog, but it's

negative. I just felt like it was back to the drawing board.

My family doctor told me that I needed to start taking iron supplements. She also gave me a lecture. "You have a dad that loves you, friends anda home. You are driving yourself crazy. Live your life. You don't need a referal to see a pshycriatrist." I knew she didn't believe me from day one.

Just last week I was able to see another neurologist that I was

reffered to. She was absolutely wonderful. She wrote down all my

symptoms and didn't look at me like I was insane. She also wanted to

know my family history. I was never asked that before, by any doctor. She is going to have me tested for an autoamunie disorder. I have an endscope scheduled for late next month and and a MRI of my spine scheduled. She also wants me to be checked for Celiacs disease. I had thought that that might have been it. However, I was told that it was more of a caucasian disease (not my words lol). I am black. My father is guyanese and my mother was jamacian. My great grandmother was of portuguese descent (on my fathers side) but I dunno if that really stands for anything. Too far down the line? I'm not in contact with my mother's side of the family. My mother passed away when I was nine.

As of the right now, I still experience the same symptoms:



Alternating between wet and hard stool

Not quite diareha

Not digesting food. Could see it in stool (I'm so sorry)

Tingling of extremities. Hands, arms, legs, feet

Ocasional muscle twitching


Ance on chest

Red eyes


Tingling scalp and forehead

Stomach and intestinal twitching

Stab like pain in stomach and buttock

Eardrum popping

Rumbling on the left side of back near stomach




Weight loss


Acid reflux

Tight chest

dry mouth

Joint cracking

Joint pain

Muscle pain.


Bad breath

Thanks for taking the time to read my story. Can anyone give me some insight as to what this might be? I do believe that this might be the story of someone with celiacs disease. Even though it is "rare" for my ethnicity to have it. I want to also state that I haven't really changed my eating habits since April.

Maybe Candida? I spoke to doctor about this and he said straight up "NO". I researched it and the symptoms that I have do match up as well. I have a history of strep throat and ear infections as child, which did require antibotics. Plus those 7 days of meds I took in August?..

Gallbladder? I thought that this might be the culprit. The constant back pain right in the middle, shoulderblades and the aching in that area. My ultrasound in April however, said that my gallbladder looked clear.

Any comments and/or feedback would be so greatly appreciated. I want my suffering to stop and any advice would be wonderful.

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I'm so sorry. My heart goes out to you. Celiac does not discriminate. Your story reads so similar to what my brother is going through, and to this date, he has not been tested for Celiac disease or any other autoimmune disorder, even though they run in the family. Doctors just tell him he nuts. There are so many informative people on the board that will offer you great advice. Please keep us posted after your tests.

2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life


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I just read your story and it seems a lot like mine, except that I suffered over a course of about 20 years with this.

For each individual, symptoms vary. Some of the symptoms you experienced do suggest Celiac Disease.

Good Luck on those tests!

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Sorry to hear that you're going through so much but the fact that you're doing so much research is great and you will always be your own best advocate. Your symptoms could be from many things and celiac could definitely be one of them. Your endoscope will provide you more information (I missed whether they did a blood test for you for celiac?) and perhaps they'll do a colonoscopy as well?

If all turns out normal you may want to try a gluten free diet anyway and there are other diets that may help you as well like the low FODMAP diet. Some people are sensitive to many different foods other than gluten like dairy, corn, soy, excess fructose etc. so a lot of symptoms can be alleviated by diet as long as your other tests don't show anything else like IBD.

Hang in there and wait for your test results and definitely consider diet, vitamin supplementation and perhaps a gentle laxative to keep things moving - Miralax has limited side-effects but you should speak to a Dr. as I'm not sure how it would interact with anything else. My dietician recommended Spa Tone as an iron supplement which doesn't cause crazy constipation like most other iron supplements. You can also try eating things like cooked spinach, clams and then taking vitamin C to increase the absorption of iron.

Let us know how everything goes - there are a lot of people on here who can offer amazing advice.

Diagnosed with eczema 1999, IBS 2004, Horner's syndrome 2004, severe anemia (B12) 2006, reactive hypoglycemia 2007, hypopituitarism due to autoimmune attack 2009 (diabetes insipidus - lack of vasopressin, lack of cortisol), potential Celiac Disease - difficulty getting 100% diagnosis but have gone gluten-free and am feeling better.

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I'm in the process of being tested for celiac disease. I've had some of the same symptoms as you including the sharp pain near the heart. I really relate to your experiences of doctor's brushing aside your symptoms and trying to attribute them to your mental state. This is extremly disheartening cause you know what you're feeling is not normal for you and it's frightening when they're discarded.

My niece was diagnosed with celiac when she was two years old so it runs in our family. I have the fatigue, vertigo, fogginess, sharp stomach pains and flatulence as well. In addition, I also have these weird, convulsion like episodes where my head starts bobbing back and forth and my upper torso starts rotating. I don't understand what's happening.

I have a great neurologist who is sending me for all these tests. My brother suggested I be tested for celiac so on my next appointment I will ask the neurologist to refer me.

Please don't give up in trying to seek answers for yourself or let doctor's attitudes put you off or make you feel bad.

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I'm so sorry to hear what you are going through. I would definitely get checked for Celiac disease. To refuse to test you because you aren't white is insane. Maybe it's less common in certain ethnic groups, but it still exists! I met a black waiter awhile back who suffers from terrible celiac disease. I would not give up with getting tested for it!

I hope that you get some answers very soon!

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Most doctors are extremely ignorant about celiac...and people who can develop celiac. I personally know at least a half-dozen Black people with celiac. A lot of doctors won't test people who are overweight either because they falsely believe that celiacs are all skin and bones.

In looking at a site that lists the symptoms of nutritional deficiencies and toxicities, it appears that you might be suffering from deficiencies in both magnesium and calcium. Generally, these two minerals should be taken together. If you have celiac, you may be unable to absorb either one of these nutrients, but, for magnesium, you can always order magnesium oil and add it to some water to soak your feet in it. You'll be able to absorb it through your skin and start feeling better very soon. Here's the site, in case you're interested in reading about this: http://www.behealthyatwork.com/pdf/Deficiency-Toxicity.pdf

I'm sorry that you've been through the mill with regard to your health problems, and I sincerely hope you find some answers soon. I strongly suspect an auto-immune disease...and celiac may be at the root of the problem....so I hope you'll let us know how your tests turn out.

Good luck to you!

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Yes, I've also heard that people have been not been allowed to be tested for Celiac if they are too old (the myth that celiac disease is a childhood disease and you will "outgrow" it) or not skinny (actually quite a few people with celiac disease are normal or overweight, not underweight). Don't give up! Please keep us posted, ok?

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Thank you so much for all of your responses. It means the world to me to have people who understand me or at least sympathize. Even the people I live with seem to not believe me because I "look" well. I feel like I've been to hell and back. I've never been so sick in my whole life. I'm hoping in a strange way that I do have celiacs. I know it sounds awful/offensive to say that, but I want to know what's wrong and get better. I just want my health back. I hope I didn't offend.

I have not had a blood test for celiacs. I plan on asking my doctor about that. I have an endoscopy scheduled for Nov 25th and I will ask for a colonscopy after. I'm getting a blood test done sometime this week for other auto-immune diseases (i.e lupus, scleroderma..) I think the fact that I'm black and overweight, is probably why it took so long from them to even mention celiac's. I was actually afraid to mention it because I didn't want to be laughed at again. But I definitely will be more stern with it. I believe that all of my problems are due to some sort of digestive problem. Some of the symptoms may be an indirect cause of my problem? Vitamin deficiency caused by malabsorption from whatever primary problem I have. I will definitely keep you updated. Thank you all again so much.

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Yes, I agree with you that the fact that you're black and overweight has contributed to doctors' inadequate response to your symptoms. However, even if you test negative for celiac, I hope you'll try a gluten-free diet on a trial basis to see if you feel better. And I hope you'll also consider taking calcium and magnesium supplements.

Please keep us apprised of your progress...

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Here: http://www.celiacdisease.net/assets/pdf/CDCFactSheets%20FactsFigures%20v3.pdf

This says incidence is LOWER but not nonexistent.

Good luck and don't give up!!

Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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When you go for the blood tests you need to have the following done: total IgA, IgA/IgG tTG(tissue transglutaminase antibody), IgA/IgG AGA(anti gliadin antibody), IgA EMA(antiendomysial antibodies) and IgA/IgG DPG(deamidated gliadin antibody). You also need to have at least 8-11 tissues samples taken from differnent areas in the small intestine (duodenum) to get the best chance of an accurate biopsy for celiac. They will take tissue samples from the stomach and esophagus also for other things. I agree with rosetapper23, please consider trying the gluten free diet even if your testing is negative. It won't hurt to try it.

Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease

DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)

DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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It sounds like you've been through an awful lot? Be assertive about the Celiac testing. I had all sorts of symptoms for years! I was given a few tests here and there..but nothing was diagnosed. i got that label of hypochondriac.

Even when I got so sick I couldn't eat my Dr. told me to "eat Tums"..

Finally, I started dropping weight and a lot of additional symptoms started creeping in. My Dr STILL didn't take my complaints seriously!

He ordered a CT scan just to shut me up and it found enlarged lymph nodes in my digestive system. I was told "maybe I should find a GI"?

I was lucky I found one that listened to me and ordered blood tests and scheduled an endoscope...which led to my Celiac DX.

When I went back to my Dr. he questioned my DX! He STILL thinks it's all in my head.

Good luck to you. So many of us have gone through what you are going through now. Don't stop eating gluten until your tests are run. You will get false negatives if you are eating gluten-free before having them done.

Good luck..I hope you get some answers.

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You have been thru an awful lot. Stay on gluten until you get your tests done for celiac, and no matter what the results, try going off gluten for a couple months. You will have your answer then as to whether it is gluten that's causing your problems. Celiac testing is not real reliable in the first place so don't consider it the end if tests come back negative. You have to do what is best for you. Experimenting with a gluten-free diet is your choice.

Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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Wow you sound like you've been through hell. Your issurance provider must love you (J/K). Thats sounds to be about 100k worth of medical tests.

This story is pretty close to my story, only I have been sick since Aug 2010. Go gluten free right now. I'm 8 days gluten free and I am recovering rapidly. It is absolutely false to think that Celiacs disease symptoms are restricted to digestive. Most of mine were neurological.

Three things you need to do.

1)Go gluten free

2)Get the tests done for Celiacs disease

3)Find a good natural/holistic doctor.

Mind this too. Once you go gluten free, you will feel better. But getting back to 100% will take a while. When your body is inundated with a toxin it cannot process or excrete, it stores this toxin in water soluable fatty tissue. As you go gluten free and stop saturating you body with this toxin, you body begins to work off this fat. This fat also contains a whole bunch of gluten so you will continue to experience some sympmtoms though not as bad. You being a heavier person better start now.

Just keep going. I went to the ER over 10 times, went to 20 doctors, and had 60k worth of test and they all called me crazy. You're not crazy. Change your damn diet!

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I would change the order of LOWNskater's recommendations:

1. Get tested

2. Go gluten free regardless of the test results

3. Find ((whatever kind of doctor you prefer) who understands celiac disease

You must make testing the first step to make sure the results are accurate, or there is little point in doing them. The antibodies stop being made, the small intestine starts to heal and the results can all come up (falslely) negative, so for the best chance of an accurate result keep eating gluten until Nov. 25.


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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LOL, I actually live in Canada where for the most part health care is free. I must have spent about 500 dollar over the past 7 months.

I'm wondering if I should take the blood test first? If it comes back negative, then go through with the endoscopy? I have been gluten free for almost 24 hrs and I do feel better in terms of energy. Maybe it's just a placebo effect? I dunno.

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I feel your pain about the doctors who don't believe you. My last GI just dropped me. Luckily I have a great PCP who actually believes me.

The problem is there are about 200 different symptoms related to Celiacs or Gluten Intolerance and that's part of the problem why doctors don't get it. Some people have a lot of GI problems, some it's more mental health issues, for others it's skin issues, etc.

As for the Candida possibility, a lot of mainstream doctors don't believe in it, which is why your doctor probably said no. Personally I think they're behind the times. My grandfather went to one of the doctors who pioneered the diet and it really helped him. I tried it for a while and it helped me too. The problem is that it's a very restrictive diet, so it's hard to stay on without some effort. It includes eliminating a lot more than gluten. But if your Celiac tests come back negative, you may want to look into it.

Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....

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Stay Strong, I have just been diagnosed last week. You've come to the right place there are so many well educated people here. People who live this day after day and have personnel experience. The last 3 years they treated me for Gerd and possible Irritable Bowel. I have had an Endoscopy every year for 3 years. Finally this year they ran the blood tests, the first step which showed Celiac then the Endoscopy confirmed it. I have been on 9 different Gerd medications all this time. I have had issues for 35 years (my first endoscopy) they always dismissed it as an inflammation and Gastritis.

Have the blood test and then the endoscopy. If it comes back negative follow the advise of all the good people here, trust me you will feel so much better.

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yes, be more insistent to get tested even if the doctors think you are crazy! Life is short and it's not worth living in such pain and agony. It just makes me furious to hear how doctors treat patients, especially when they feel so ill in the first place! I've had a few doctors tell me that I just have psychological issues, but I know they are dead wrong. Don't you just love it (sarcasm here) if doctors cannot figure out what's wrong with you, they just blame you for "psychological" problems? We are all rooting for you!

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LOL, I actually live in Canada where for the most part health care is free. I must have spent about 500 dollar over the past 7 months.

I'm wondering if I should take the blood test first? If it comes back negative, then go through with the endoscopy? I have been gluten free for almost 24 hrs and I do feel better in terms of energy. Maybe it's just a placebo effect? I dunno.

The healthcare isn't free. You just pay for it collectively in taxes. Nothing is free.

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how are you holding up? Hope you are ok.

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Best of luck to you...your complaints have the ring of truth, and you don't sound like a hypochondriac. Something real is going on with you, and you just need to find a medical person to take you seriously.

I'm going through the same thing (trying to get diagnosed), and it's very frustrating. Hang in there, and good luck!

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Hey everyone!

I wanted to give you all an update on my health. No huge changes actually. Still sick but trying my best to be strong. I had a blood test taken about 3 weeks ago to test for any autoimmune diseases (i.e lupus)came back negative. I know that celiac is autoimmune. However, I have yet to have the celiac blood panel test done. Apparently it's really expensive and they would rather do the endoscopy first. I'm not too happy about that. If I have celiac, would my ANA test be positive?? I had an MRI done of my entire spine yesterday, without contrast. I'll be going back to my neurologist for the results. Endoscopy was rescheduled for Dec 15. I'm really nervous about that. Anyone here can tell me there experience with endoscopy?

As of right now my symptoms include:


Frequent headaches (everyday!)

Muscle twitching

Mild anxiety

Mild tremors



Sharp pains in stomach and sometimes stomach (either one everyday)

Bouncing back between diarist and constipation.

Different colored stools--sometimes dark and sometimes very light




Its been almost 6 months and I'm still suffering. Blood work, MRI and CT scan of brain is fine. I guess the next step is Endoscopy.

Again, thanks for all of your support.

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