Could This Be Celiac?

[rf2020]

I am a 22 year old male from Arizona. I have been experiencing thyroid-like symptoms for several months, including muscle pain, brain fog, neurological and visual disturbances. I have been tested many times for thyroid. TSH 1.5-3.5, but TpoAB is high. I do not think it is thyroid anymore since I have felt worse since last time but my last recent thyroid test was better than usual (TSH 1.5 this time).

I have had a urinalysis test which showed a "small amount of bacteria". I am taking antibiotics for it, and am on day 6. No significant improvement.

The biggest tangible thing that we can see here is that my body temperature has been hovering around 97.0 degrees F. I have been getting white areas of skin on my palms where the cracks are (the cracks that your skin bends on when you close your palm.

The reason I believe it may be celiac is that we have ruled out many problems, and I have been having intestinal symptoms, like mild discomfort. I have had a hiatal hernia for around the same time, but that hasn't been bothering me. I took 40 mg of prilosec every day from july to september, and I stopped out of concern of nutritional deficiency. However, my condition has not improved since then.

I have been to many doctors, and my most recent batch of tests, pending, include Valley Fever Panel(I have had a mild cough that seems to come from the right lung), Vitamin B panel, Iron, Lipid Panel, and some kind of general broad autoimmune test.

I am very worried because my friends are past the point of believing I am crazy, and my doctor has said that this is psychiatric, but I don't believe that she has really tried to figure out what is going on. I am not doing well at my job and my doctors are giving up on me. I was put on anti-depressants but they are not improving things very much. I really do not believe that a psychiatric disorder can cause my body temperature to consistently stay at around 97.0, and cause me to feel like I have the flu all the time.

Here is a summary of the symptoms again and tests and medicines I am on

Urinalysis showed "small amount of bacteria"

Put on Cipro, oral antibiotic 500 mg twice a day, on day 6 of 10

Ruled out thyroid dysfunction with reasonable certainty

Tested for parasites and food poisoning, negative (I drank some bad water a few months ago)

Migraine Headaches with aura, seems to be going away since starting antibiotics

"Visual Snow", Visual Flickering, Minor Visual Disturbances similar to what you get when ill

Intestinal discomfort and minor nausea, intestinal gas sensations and noise

Occasional dizziness and minor vertigo, sometimes that can go away for days, then come back frequently for days

Muscle twitching (infrequent, but comes in clusters), muscle pain (lower back, right arm, right shoulder) -- not sure if lower back is muscle or not, it is a different kind of pain

Ringing in ears

Body temperature 96.9-97.5, usually 97.0

Fatigue, mental and physical

Impaired cognition

Sensory Disturbances, symmetrical on both sides

"Seeing stars" occasionally, or small pinpoint flashes of light in my vision

Had MRI of brain, two CT scans of brain, CT of chest with contrast, normal.

Stress echo of heart normal

EEG showed temporal lobe slowing on left side, and broad spiking when drowsy. I do not believe this is a root cause or anything significant.

Thank you for your time.

[Mother of Jibril]

A few thoughts come to mind...

1. If your body is making thyroid antibodies, then you have an autoimmune thyroid disorder... end of story! TSH can bounce all over the place when you're having an attack. Don't wait until your TSH is sky-high to do something about it. Look for a GP doctor who's willing to work with you.

2. I don't know if you have celiac, but clearly you have some autoimmune issues going on. A really good book to read is "The Autoimmune Connection" by Rita Baron-Faust and Jill Buyon. It's geared toward woman (because women get more autoimmune disorders), but don't let that throw you off. It's a very well-organized book with charts of symptoms and disorders that cluster together. Read through it and see what matches your symptoms the best.

3. You could also have some vitamin and mineral deficiencies... it will be interesting to see what the tests show. Just remember there's a big difference between minimum levels and optimum levels. For example, your doctor might say a ferritin level of 30 is OK, but you'll probably feel better at 50 or higher. Vitamin D is a good supplement for depression and immune dysfunction... it can't hurt to try it. Unless you live in a sunny place and spend a lot of time in the sun with exposed skin, go to this website (Open Original Shared Link) and figure out a dose based on your weight.

4. It can't hurt to try a gluten-free diet! You need to be on gluten if you want to get a blood test for celiac disease, but even if it comes back negative... eliminate gluten for a couple of weeks and see how you feel. Gluten can affect a LOT more than just the digestive system.

I'm sorry you're feeling so many problems... that's not unusual here. Welcome to the group

[MELINE]

Ok this could be celiac, this could be candida overgrowth, this could be many things.

A gluten free diet is more than safe and it is sure that even if you are not celiac, it won' t hurt you. But it is a diet with many restrictions. I suggest you run some blood tests for celiac. If you go gluten free, then you will not be able to have these tests (as mother of Jibril posted). And believe me you definately will want to know if you have celiac or not. it is a life time diet. Why do it if you are not celiac?

I am sorry that you are not feeling well. Don't listen to them when they tell you that it is all in your head. I've read somewhere that it goes like this:

-Mutliple strange uncomfortable symptoms

-you start visiting several doctors

-doctors find no answer / way to relief you

-doctors start saying that it is all in your head

-friends / family start saying that you are an imaginary patient

-you start searching the net

-you google your symptoms and you find a candida / celiac / etc...page that fits your symptoms

-you are so happy, you spend hours reading about your condition and finding dietary advices

-you change your diet, you buy tones of supplements, you are feeling good again

-you tell no one that you have celiac / candida etc cuz they just look at you like you are alien from planet mars.

-friends/family/doctors say the "I told you so - It was all in your head" moto....

Hope things will get better for you. let us know if you find something new. Most of us started right where you are now. Trust me, things get better . You just have to be patient. The unfortunate thing about some diseases - like celiac - is that you don't turn blue when you have them, so that you can convince everyone that something is wrong. So they just cannot believe that when you eat bread you have nightmares, abdominal pain and extreme fatigue. They need you to drop dead so that they can believe that there is actually something wrong. ........But YOU now that something is wrong.....so don't stop searching.

Meline

[sugarsue]

Hi, I have Hashimoto's Thyroiditis and if I'm remembering correctly, positive TPOAB is positive anti-thyroid antibiodies which means that you do have a thryoid autoimmune disease. My TSH is always low normal but my doc's supress it to help with symptoms. If my TSH stays closer to .9 I feel much better than if it gets over 1. The books that have helped me are by Mary Shomon who is my thyroid "guru" although it used to be hard to find information about what it means to have positive ATA's.

Are you getting celiac testing done? I think it's worth it for you. Also, this test may be good as well if you have not had it yet. It's the Organic Acid Test by Great Plains Lab.

Good luck to you!

[SGWhiskers]

I can't tell you if you have Celiac or not, but I will agree with all of the above posters comments and add that my symptoms were exactly the same as yours from the statement about migraines down through the seeing stars comment. All have started to improve on my gluten-free diet for diagnosed Celiac. Whether it is Celiac or some other autoimmune disorder, keep pressuring the doctors. It is NOT in your head. I put off my diagnosis for WAY too long because everyone all my life told me I was a hypochondirac. I started to beleive it and I started to beleive it when people said, we all have aches and pains. The reality is that the occasional ache or pain is nothing compared to the constant ick of a chronic illness and the mind games it can play with you. If your doctor does not beleive you and does not run tests, find a new doctor or get a second opinion. It sounds like your doc is running tests though, and I encourage you to keep having tests run until you find the result. Docs get frustrated when they can't cure someone, and can sometimes unconsciously blame the patient rather than themselves or medicine's inherent need for more diagnostic tools. Courage to claim ownership of my symptoms and a change of doctors is how I was diagnosed.

Good luck with finding out what autoimmune you have

[rf2020]

  SGWhiskers said:

I can't tell you if you have Celiac or not, but I will agree with all of the above posters comments and add that my symptoms were exactly the same as yours from the statement about migraines down through the seeing stars comment. All have started to improve on my gluten-free diet for diagnosed Celiac. Whether it is Celiac or some other autoimmune disorder, keep pressuring the doctors. It is NOT in your head. I put off my diagnosis for WAY too long because everyone all my life told me I was a hypochondirac. I started to beleive it and I started to beleive it when people said, we all have aches and pains. The reality is that the occasional ache or pain is nothing compared to the constant ick of a chronic illness and the mind games it can play with you. If your doctor does not beleive you and does not run tests, find a new doctor or get a second opinion. It sounds like your doc is running tests though, and I encourage you to keep having tests run until you find the result. Docs get frustrated when they can't cure someone, and can sometimes unconsciously blame the patient rather than themselves or medicine's inherent need for more diagnostic tools. Courage to claim ownership of my symptoms and a change of doctors is how I was diagnosed.

Good luck with finding out what autoimmune you have

Thank you everybody for the replies. I am not going to get a Celiac test, but will stop eating gluten for awhile. I think many of us rely too much on blood tests to get yes or no answers.

I don't believe this is thyroid related. I don't mean to be rude to anyone who still thinks it is, but there is a lot of quackery out there that is capitalizing on the thyroid debate. I have been to a naturopath who took my $400 and quickly put me on Synthroid without investigating. I had panic attacks the following day, which continued for at least a month, until I started suffering brain fog and depersonalization. I was feeling OK compared to now, until I took those pills. I have had about six thyroid tests, and I feel safe to conclude that it is a waste of time to be looking at this. I have a family history of hypothyroidism, which may explain the TPOAB, but I don't believe hypothyroidism is the problem in my case. Perhaps one day in the future it will be a problem, but not now.

I am starting to believe that a lot of this could be caused by a major depressive episode, which of course can be caused by lack of nutrition, and perhaps due to my worrying over what is going on in the world right now, as well as some personal issues. I have been struggling with general depression since my grandmother died when I was 13, but only now realize that this is the depression taking a turn for the worse. The funny thing is my life has been a lot more stable than it has been in a long time, but that didn't seem to make any difference here. As you may know, the hypothalamus is the part of your brain that regulates body temperature (through hormones), and is likely the part of your brain that is dysfunctional with a major depressive episode.

I am going to take a multi-pronged approach to solving this problem.

1) Rule out other problems with the tests I currently have pending.

2) Start a gluten-free diet, because of the strong hunch that there is something GI-related at work, combined with the symptoms and prevalence of Celiac Disease.

3) Work with psychiatrist and psychotherapist for depression issues.

4) Accept that there is nothing seriously wrong with me, and that this will pass.

I can't say I am not scared, but this is still better than a state of panic and not knowing what is going on or what to do about it.

I would appreciate any further responses about this, I could use all the knowledge and help I can get!

[gfpaperdoll]

hi 2020, I think a gluten-free trial is a good idea. A friend of mine that I diagnosed, had a cough when she ate & at night. Which I was not aware of when I suggested she had a gluten problem. She had a few other symptoms also... When she quit eating wheat, the cough went away immediately. Her husband was thrilled for her.

I am not sure but the cough might be more of an allergic reaction. Though it really does not matter, because the treatment is the same, do not eat gluten. You can be allergic & have gluten intolerance or celiac. I was diganosed as allergic to oats & barley 35 years ago. I have double DQ1 so I am diagnosed as gluten intolerant also.

For allergies, whenever you have the lips swell, mouth burning, itchy throat, or coughing, those type of things, you want to pay particular attention to those allergies because they can become life threatening at any time.

[Mother of Jibril]

  rf2020 said:

1) Rule out other problems with the tests I currently have pending.

2) Start a gluten-free diet, because of the strong hunch that there is something GI-related at work, combined with the symptoms and prevalence of Celiac Disease.

3) Work with psychiatrist and psychotherapist for depression issues.

4) Accept that there is nothing seriously wrong with me, and that this will pass.

It's totally up to you This forum is great for advice and ideas... but you still have to live in your body. The only person who really knows what that's like is YOU.

Here are my thoughts...

1) OK... just remember that a negative result doesn't necessarily mean negative forever. I have GOOD reasons not to trust doctors, but I still need their help for tests and prescriptions.

2) Why not? You could always do a genetic test in the future if you're wondering about how this might impact your blood relatives (if you have kids, for example). There are some advantages to having a biopsy and additional testing (bone scan, tests for vitamin deficiencies, etc...), but if you're just completely sick of doctors, then you have nothing to lose by trying the diet on your own (IMO).

3) Excellent idea. I had an episode of severe depression that started two years ago and counseling was very helpful. However... now that I'm taking thyroid hormones and vitamin D (and staying off gluten, dairy, and corn), I don't feel even remotely depressed. I can't believe how good I feel.

4) I know it's scary and depressing to have a chronic, autoimmune disorder. Ugh. Be careful not to linger in the "denial" stage (which might prevent you from getting appropriate help), but otherwise I think it's very important to trust that you CAN be healthy and feel good. Even if you do have celiac disease, a lot of people feel great once they stop eating gluten.

[rf2020]

Update: Negative on valley fever, celiac disease or gluten sensitivity.

Waiting on food allergy panel, CT scan of abdomen

Still having weird sensations in head, tension headaches, dizziness/vertigo (especially when trying to think or concentrate on something visually), and visual anomalies. Any ideas?

[ang1e0251]

You said negative on celiac. What test did you have? Did you have a complete panel? Even so the blood tests often show negative. I think your idea of a trial gluten-free diet is a good one. I say go for it. I would reccomend keeping a food/symptom journal while you do. That can be very helpful to help you match up reactions with foods, etc. You may also want to give up dairy it can be a killer for those who really are sensitive. Better see if the meds and supplements you are on contain gluten or dairy also. The other good thing about a journal is that if you decide to show it to your dr, they put some credence into the written word. Even if they doubt what you say, the journal can speak to some.

Good luck and I hope you're feeling better soon!

[rf2020]

  ang1e0251 said:

You said negative on celiac. What test did you have? Did you have a complete panel? Even so the blood tests often show negative. I think your idea of a trial gluten-free diet is a good one. I say go for it. I would reccomend keeping a food/symptom journal while you do. That can be very helpful to help you match up reactions with foods, etc. You may also want to give up dairy it can be a killer for those who really are sensitive. Better see if the meds and supplements you are on contain gluten or dairy also. The other good thing about a journal is that if you decide to show it to your dr, they put some credence into the written word. Even if they doubt what you say, the journal can speak to some.

Good luck and I hope you're feeling better soon!

Thanks for the reply. I know how to read test results, and the test showed not even a remote sensitivity. I had a complete panel ordered but it looked like they did not do every test due to the results of the first.

I do not think it is celiac anymore anyway. A lot of the head symptoms I am having may be from a pulled muscle I get from jerking my head in my sleep. The muscle is on my neck, and when rubbing it I feel referred pain in a lot of places I was hurting. We will find out what the CT scan shows as far as what is causing the abdominal pain, but I do not think it is celiac, thank you. There is a lot of lactose intolerance in my family so there may be something going on there however... There is a food allergy test still pending.

[Mother of Jibril]

You know... the "lactose" issue could actually be casein intolerance. There's no test for it, but the symptoms can be a lot like celiac disease. It gave my son eczema, sinus congestion, gas, bloating, projectile vomiting, and diarrhea streaked with blood.

The DQ7 gene is associated with casein intolerance AND autoimmune thyroid disorders.

If you want to test this theory you need to eliminate all cow's milk dairy products... yogurt, cheese, ice cream, sour cream, buttermilk, whey, etc...

[rtisdell]

Hi, my name is Robbie and I live in Calgary, Alberta Canada and I'm 20 years old. I want to start by saying that you are the first person I have ever come across in any forum who has the exact symptoms as myself and I dont mean some I mean literally every symptom you have listed. For several years now I have had migraines (with aura), depersonalisation, derealization, brain fog, visual snow as well as flickering lights, the flickering lights seem to appear most often in low light situations or when i move from darkness to light, it can also be aggravated due to exercise or the day after any moderate alcohol intake.

I also did have symptoms of vertigo when this condition began, although it has not been a problem recently.. my muscle twitching is mostly in my legs and I also have on and off ringing in my ears, impaired cognition and fatique.

some other symptoms that I am currently experiencing include a very stiff neck that i find myself constantly rolling around and cracking, problems with my short term memory, anxiety, temporary spots in my vision, insomnia, mucus in my stool, and what i believe to be a reoccuring urinary tract infection where my urine will become cloudy and i will experience a burning sensation immediatley afterwards aswell as a sensation of a need to urinate again immediatley after.

since this began I have had bloodwork done, been placed on a heart monitor, had a CT scan performed, seen two psychologists, and have been tested for anything that might be causing my urinary problems. After every test came back entirley normal I went through a long period (over a year) where i simply forced myself to believe that I was just being a hypochondriac, but there is only so long that you can ignore a list of debilitating symptoms this long and I am now back into searching for a possible cause.

It was just a few hours ago that for the second time candida overgrowth has appeared in my research, the first time i came across it I brushed it off as being totally ridiculous that yeast could be causing neurological symptoms this severe but now that I have looked deeply into it, it appears that the symptoms are a total match with everything I am experiencing the depersonalisation, the brain fog, memory problems, stiff neck, visual problems everything appears to be nearly exactly the same. As soon as i finish writing this I am going to visit my doctor regarding these issues for the first time in over a year and I believe this may be what I have been searching for.

could you please contact me by email as soon as you can and let me know if you share any of the other symptoms I have listed and perhaps we could discuss different possibilitys regarding this condition. My email is robbie.tisdell@gmail.com

Regards,

Rob Tisdell

[ang1e0251]

Robbie, I don't have all the symptoms you describe but I thought it curious you mentioned stiff neck. I've been having a real time with that. It's even disrupting my sleep. Then I realized since I began taking sublingual b12, the neck pain is gone. Yesterday I had a long day. The pain woke me in the night, I didn't sleep much after. This morning I saw the b12 bottle and bingo, I realized I hadn't taken any yesterday. Silly, I know. Today I'm back on board and the pain isn't completely gone but nearly. I bought another bottle to keep at my shop in case I forget!!

[rf2020]

  rtisdell said:

Hi, my name is Robbie and I live in Calgary, Alberta Canada and I'm 20 years old. I want to start by saying that you are the first person I have ever come across in any forum who has the exact symptoms as myself and I dont mean some I mean literally every symptom you have listed. For several years now I have had migraines (with aura), depersonalisation, derealization, brain fog, visual snow as well as flickering lights, the flickering lights seem to appear most often in low light situations or when i move from darkness to light, it can also be aggravated due to exercise or the day after any moderate alcohol intake.

I also did have symptoms of vertigo when this condition began, although it has not been a problem recently.. my muscle twitching is mostly in my legs and I also have on and off ringing in my ears, impaired cognition and fatique.

some other symptoms that I am currently experiencing include a very stiff neck that i find myself constantly rolling around and cracking, problems with my short term memory, anxiety, temporary spots in my vision, insomnia, mucus in my stool, and what i believe to be a reoccuring urinary tract infection where my urine will become cloudy and i will experience a burning sensation immediatley afterwards aswell as a sensation of a need to urinate again immediatley after.

since this began I have had bloodwork done, been placed on a heart monitor, had a CT scan performed, seen two psychologists, and have been tested for anything that might be causing my urinary problems. After every test came back entirley normal I went through a long period (over a year) where i simply forced myself to believe that I was just being a hypochondriac, but there is only so long that you can ignore a list of debilitating symptoms this long and I am now back into searching for a possible cause.

It was just a few hours ago that for the second time candida overgrowth has appeared in my research, the first time i came across it I brushed it off as being totally ridiculous that yeast could be causing neurological symptoms this severe but now that I have looked deeply into it, it appears that the symptoms are a total match with everything I am experiencing the depersonalisation, the brain fog, memory problems, stiff neck, visual problems everything appears to be nearly exactly the same. As soon as i finish writing this I am going to visit my doctor regarding these issues for the first time in over a year and I believe this may be what I have been searching for.

could you please contact me by email as soon as you can and let me know if you share any of the other symptoms I have listed and perhaps we could discuss different possibilitys regarding this condition. My email is robbie.tisdell@gmail.com

Regards,

Rob Tisdell

Hi,

First of all, I am not a doctor so keep this in mind and don't try to self-medicate anything.

Try to get an EEG and MRI done by a neurologist if you can, but don't get discouraged if it is abnormal, because they are abnormal in a lot of people. This is to feel better if it is normal.

Second, my symptoms have improved dramatically by seeing a psychiatrist and being prescribed celexa (an SSRI), depakote, and klonopin to stop the night jerking. My vision is returning to normal, but I still have a lot of muscle and back pain. I can live with it and think better.

I am also learning that depersonalization/derealization is a subjective thing, and that if you don't think about it, it will eventually go away. Sometimes we all have moments where we are just in that nonsense-zone but for some of us we stay in that zone due to stress or infection or something else.

I jerk my head at night, which pulls muscles in my head, and causes tension and swelling, which can hurt blood flow to the brain perhaps.

Sleep can have a lot to do with this kind of thing. Not necessarily how much sleep, but how well you sleep. See a psychiatrist (ASK FOR A GOOD ONE!!) about this if you have anything going on with your sleeping pattern. Believe me, they are a big help.

[caek-is-a-lie]

  rf2020 said:

Update: Negative on valley fever, celiac disease or gluten sensitivity.

Waiting on food allergy panel, CT scan of abdomen

Still having weird sensations in head, tension headaches, dizziness/vertigo (especially when trying to think or concentrate on something visually), and visual anomalies. Any ideas?

Occipital migraines? I get visual disturbances too, and sometimes when I read, the center of my vision disappears (not just a dark hole...completely gone). My doctor said it's occipital migraines but without pain. I dunno, worth a guess.

[Jessica-faye]

  On 12/17/2008 at 7:03 AM, caek_is_a_lie said:

 

Occipital migraines? I get visual disturbances too, and sometimes when I read, the center of my vision disappears (not just a dark hole...completely gone). My doctor said it's occipital migraines but without pain. I dunno, worth a guess.

Expand Quote  

rf2020- have you ever tried eating a fully raw/plant based diet? I have gone through heaps of experiences discussed and nothing has cured my body more than the very food I am putting into my body. Food is thy medicine and this has been proven stronger than any drug I have ever been put on. A lot of times depression and anxiety can come from lack of nutrients and illness in our gut. Have you heard of the brain and gut connection? I'd encourage you to check it out!  

[cyclinglady]

  On 2/4/2016 at 6:33 PM, Jessica_faye said:

rf2020- have you ever tried eating a fully raw/plant based diet? I have gone through heaps of experiences discussed and nothing has cured my body more than the very food I am putting into my body. Food is thy medicine and this has been proven stronger than any drug I have ever been put on. A lot of times depression and anxiety can come from lack of nutrients and illness in our gut. Have you heard of the brain and gut connection? I'd encourage you to check it out!  

Expand Quote  

Hi Jessica!  

This is a pretty old post, but the topic is still current.  But I caution  that newly diagnosed celiacs may want to consider a cooked-to-death, whole-foods diet during the first few months of a gluten free diet.  Why?  Many patients lack the digestive enzymes needed to digest raw foods due to intestinal villi damage.  

I agree that food can be great medicine!  

 

[diskord]

Hello,

My name is Ryan. Did anyone ever find any diagnosis/resolution to the original problem posed by rf2020?

I have very similar issues.

Thanks!

[cyclinglady]

  On 2/29/2016 at 10:25 PM, diskord said:

Hello,

My name is Ryan. Did anyone ever find any diagnosis/resolution to the original problem posed by rf2020?

I have very similar issues.

Thanks!

Expand Quote  

He published his email address in this posting.  You might try contacting him directly.  The email address may still be valid.

Good Luck!