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Very Ill. Pls Read My Story (Long)

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Posted 26 October 2011 - 02:25 PM

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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Posted 26 October 2011 - 05:06 PM

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.
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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
2009 Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed



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Posted 26 October 2011 - 05:19 PM


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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Posted 26 October 2011 - 05:29 PM

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.
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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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Posted 26 October 2011 - 05:35 PM

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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Posted 26 October 2011 - 05:50 PM

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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Posted 26 October 2011 - 06:17 PM

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.behealthy...cy-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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Posted 26 October 2011 - 06:31 PM

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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Posted 26 October 2011 - 06:58 PM

I've read that most celiacs are overweight rather than underweight. Doctors are soooo not up to date with the medical research on celiac.
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Posted 26 October 2011 - 07:46 PM

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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Posted 26 October 2011 - 09:02 PM

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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Posted 26 October 2011 - 09:10 PM

Here: http://www.celiacdis...sFigures v3.pdf

This says incidence is LOWER but not nonexistent.

Good luck and don't give up!!
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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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Posted 27 October 2011 - 05:10 AM

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.
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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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Posted 27 October 2011 - 05:43 AM

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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Posted 27 October 2011 - 09:26 AM

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.
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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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