Not Celiac Disease, But Gluten Intolerance?

[SoL]

Hello, 

My name is Bryan and I'm 23 years old. I've never made an account on any website to talk about this, so this is my first because I have a lot to say and I have been avoiding this. I guess I'll start off giving some history of the issues that I have been having. 

When I was 18 I was getting pretty serious about lifting weights. I started off at about 160 lbs and got to about 180 when I was about 20. Once I hit 20 years old I injured my back pretty bad to where I was in bed for 3 months, and during the time I started to have some GI symptoms around this time. At the time I thought I was literally having heart attacks due to a serious pain in my chest. It would show up sometimes when I ate food, and especially when I drank caffeine (I never really cared for caffeine, but at this time a preworkout Jack3D got me hooked on it). However, I ended up going to Dr. and he ended up telling me I had GERD within 10 minutes, shortly after that he left the room and came back with Nexium (had to be prescribed at the time). I took Nexium for a while and it helped, but once I got off things were worse. I also couldn't take it anymore because I had a SERIOUS pain in the center of my lumbar spine that would only go away if I went #2. So, I tried the holistic path to get rid of this heartburn. Good news is that I beat heartburn, it's been years since I ever even had it. This event was from about 19 to 20 years of age (Just turning 20 it ended).

On the flip side, right when I was turning 21 something else slowly started to happen. I first started off with symptoms of being EXTREMELY TIRED 30 minutes eating a lot of the time. When I was 21, I was working at a dollar store and the first time I noticed one of these episodes I was so tired that I couldn't stand up. So, I just sat on the floor. It felt like a tiredness that was almost induced from a drug, it was a different kind of tired. I worked at this dollar store about 2-3 times a week for 3 years, until I was 23. Me and my boss had subway for probably about 90% of our lunches through the course of these 3 years. Subway 2-3 times a week, every week (I eat NO other fast food, just how I was raised). After I noticed this tiredness I started to pay attention to my stool. It was yellow, inconsistent, and I was going anywhere from 2-5 times a day. Once I was aware of being being tired and not being able to go to the bathroom right, I started to get this shoulder tightness that started from under my right scapula at the rib cage. It crept up from my rib under my scapula, to the rhomboid, to my rear deltoid and scapula, and finally to my neck. This shoulder irritation got so bad I considered death thousands of times. Sometimes I was so happy thinking about death that I would literally smile about it, realizing that this would all one day end. Mentally at this point I have developed a serious anxiety. Everyday I woke up as if I had a grenade go off in my head, as if I was drinking ALL night. I would get a full 8 hours without waking up once just to wake up each morning to have a messed up head. Somewhere down the line I started to experience something very strange with my head. Many times before I ate my head would feel "jared". It's like my eyes wanted to roll back into my head and have a seizure, but what would I know, I never had one. Sometimes I thought I would fall on the ground. This would also happen when I would hear something loud or high pitch, a baby screaming, motorcycle going by, or if someone were to throw a beer bottle away in the garbage if it hit another bottle (making the glass hitting each other).

I don't drink, smoke, or do any drugs. I have quit caffeine completely out of my life since the beginning of 2016. I forgot to mention, but caffeine and me no longer get along. It is as if I have a complete intolerance to it.

I have had -Endoscopy -Colonoscopy -Blood tests for H-Pyl, Celiac, others I can't remember -Taken antibiotics for SIBO -Gallbladder scan -Liver scan -Pancreas is fine If I remember right -I will update more if I remember anything else. This all came up clear.

I have had 2 different General Practitioners tell me that I have anxiety. For a long time I put off anxiety medication and have told them I'm not interested. Eventually I caved and got on zoloft, but I started to have bad side effects. Then they put me on Wellbutrin, currently on 300mg a day. Wellbutrin helps, but I feel it's not the answer. I still get tight shoulder issues, bathroom problems, and I forgot to mention that I have a throat clearing issue that's so consistent that it's simply ruining my life.

I have tried gluten free 2 different times, both times I've lasted two weeks being 100% gluten-free. My symptoms are still there, but I don't THINK they are as severe. However I caved Sunday 11/6/2016 (ending my two week and two day streak), gluten-free Monday, and caved again yesterday (being Tuesday). Tuesday was the only day I noticed anything, I was super bloated/gassy/tight shoulder/bad head space. I was just unsure how to feel about it seeing as I only had symptoms on Tuesday when I caved and not Sunday.

I'm sorry this is long and so jumbled, still have bad head space.

Symptoms: Right shoulder tightness, bloating, gas, food cravings for sweets/chocolate (very noticeable while gluten-free), waking up tired, anxiety, symptoms 30 minutes after eating, will add more as I remember and experience them.

 

[GFinDC]

Hi Bryan,

Welcome to the forum!

Your symptoms could be from celiac disease.  What were the celiac tests that they did?  Were they positive for gliaden antibodies?

The usual testing process is a blood test for antibodies, followed by an endoscopy to check for damage in the small intestine.   Celiac disease can cause mal-absorption of nutrients which can lead to many symptoms.  It turns out our bodies really do need some of those vitamins they told us about in school!

You have to be eating gluten for a period of time before doing the celiac disease testing.  The tests are looking for antibodies to gliaden, a protein in wheat.  So not sticking to the gluten-free diet is a good thing for now, since it means you can get tested!  It is generally more unpleasant to start the healing process and the go back on gluten for testing.  It's better to keep eating gluten until all testing is completed.

 

[runntumtuber]

When you were tested for celiac disease were you following a gluten free diet? I got diagnosed with celiac disease 7 years ago, and recently had an endoscope done, and as far as the gastroenterologist was concerned I do not have celiac disease because there was no damage from eating gluten free. Blood tests also come back negative, yet if I even consume so much as a crumb of bread I get intense intestinal upset, migraines, horrible pain that feels like it is coming from my back but was told it had to be my stomach, and the fatigue you described.

[gcg27]

Hi Bryan, i posted something similar as you described in this same section of the forum. Look for the title " withdrawll when reintroducing gluten? ". I've been experiencing this same symptoms you said for a year, one day for no reason apparent it started to happend. If all test's  result OK and clinical advise is not helping you, i can tell you my friend, you have to start a elimination diet, gluten sensitivity may be the root of your nightmares. It is clear that you are eating something that your body does not tolerate well and then as as consencuence you get the ugly response of the antibodies working against you. 
I believe FODMAPS diet or Keto diet are a good to go, the first diet is more detailed about what you can eat or not, second option is more simple: almost no carbs, except for green leafy veggies (fiber supplementation is advise to fight/avoid constipation). 
Also i think 2 weeks off gluten is to little time to let your gut start to repair itself as well detox your body from the intoxification state that you are living. 
If you are interested, i can give you more info about it.

Good luck!

Regards.
 

[Jmmc]

Hi Bryan, you sound like you are in severe pain??.  I don't know if you are celiac or if you are just intolerant but when I felt like you did my body was covered in an itchy oozing rash? and I couldn't get a diagnosis and my #1 priority became just getting rid of the pain and agony I was feeling?. And I did that by cutting everything out of my diet and eating nothing for awhile but bone broth with chicken breast, carrots, onions -- so really chicken soup, very well cooked peas and carrots with ground beef, and sweet potatoes.  Avocado smoothies with coconut milk for breakfast with a banana sat okay some days but I lost 50 lbs in around 6 months or so.  It is drastic but for now you need to cut out ALL gluten, ALL sugar, because sugar is exacerbating your inflammation, ALL dairy, because dairy is doing the same, ALL eggs, because eggs are also a source of inflammation, CORN, because right now your system is seeing corn as gluten, QUINOA, even though it is supposed to be gluten free, because your system is seeing it as gluten as well, RICE, for the same reason, WHITE POTATOES, they are not good -- too much starch, you may never be able to eat them again!  SO NO FRENCH FRIES!!  ALL fresh vegetables and fruits, just for the time being, because they are full of sugars and starches that are hurting you right now, ALL beans and legumes and nuts as they are too gassy for your system right now, ALL soda drinks!!!! Don't ever reintroduce them!!!!  You may have an overgrowth of yeast and also they cause inflammation and could be contributing to your pain!! ALL processed, canned, frozen, packaged and fast food!!  Eat nothing but fresh food!!!  Is it hard?  At first. Is it worth it?  Do you want to be pain free?  No food is worth the pain you are suffering!  And DO NOT eat the gluten free packaged foods!!  They are full of garbage that will make you sicker!! ?? Once you feel better, like in 4 weeks, slowly begin to reintroduce one item per week back in to your diet. If you feel recurring pain, remove it. It will take discipline and perseverance but you will be happy you did it and you will feel better than you have ever felt in your life if you stick to your new fresh, real food diet. No gluten, no dairy (coconut milk is awesome!  Make pumpkin pie smoothies for breakfast with canned pumpkin!!  -- no yogurt tho?), no white potatoes, no processed or canned food (canned pumpkin is the exception!?)  And my final word of advice is does it really matter if you are diagnosed or not if you follow a strict no gluten regimen and you feel great???  Oh and one last caution, if you are using ANY over the counter pain or inflammation medications like Tylenol or Ibuprofen or Naproxen QUIT. They could be contributing to your upper GI pain!!  And research, research, research!  Good luck in your journey to recovery my friend! ?

[kareng]

51 minutes ago, Jmmc said:

Hi Bryan, you sound like you are in severe pain??.  I don't know if you are celiac or if you are just intolerant but when I felt like you did my body was covered in an itchy oozing rash? and I couldn't get a diagnosis and my #1 priority became just getting rid of the pain and agony I was feeling?. And I did that by cutting everything out of my diet and eating nothing for awhile but bone broth with chicken breast, carrots, onions -- so really chicken soup, very well cooked peas and carrots with ground beef, and sweet potatoes.  Avocado smoothies with coconut milk for breakfast with a banana sat okay some days but I lost 50 lbs in around 6 months or so.  It is drastic but for now you need to cut out ALL gluten, ALL sugar, because sugar is exacerbating your inflammation, ALL dairy, because dairy is doing the same, ALL eggs, because eggs are also a source of inflammation, CORN, because right now your system is seeing corn as gluten, QUINOA, even though it is supposed to be gluten free, because your system is seeing it as gluten as well, RICE, for the same reason, WHITE POTATOES, they are not good -- too much starch, you may never be able to eat them again!  SO NO FRENCH FRIES!!  ALL fresh vegetables and fruits, just for the time being, because they are full of sugars and starches that are hurting you right now, ALL beans and legumes and nuts as they are too gassy for your system right now, ALL soda drinks!!!! Don't ever reintroduce them!!!!  You may have an overgrowth of yeast and also they cause inflammation and could be contributing to your pain!! ALL processed, canned, frozen, packaged and fast food!!  Eat nothing but fresh food!!!  Is it hard?  At first. Is it worth it?  Do you want to be pain free?  No food is worth the pain you are suffering!  And DO NOT eat the gluten free packaged foods!!  They are full of garbage that will make you sicker!! ?? Once you feel better, like in 4 weeks, slowly begin to reintroduce one item per week back in to your diet. If you feel recurring pain, remove it. It will take discipline and perseverance but you will be happy you did it and you will feel better than you have ever felt in your life if you stick to your new fresh, real food diet. No gluten, no dairy (coconut milk is awesome!  Make pumpkin pie smoothies for breakfast with canned pumpkin!!  -- no yogurt tho?), no white potatoes, no processed or canned food (canned pumpkin is the exception!?)  And my final word of advice is does it really matter if you are diagnosed or not if you follow a strict no gluten regimen and you feel great???  Oh and one last caution, if you are using ANY over the counter pain or inflammation medications like Tylenol or Ibuprofen or Naproxen QUIT. They could be contributing to your upper GI pain!!  And research, research, research!  Good luck in your journey to recovery my friend! ?

I have to respond to the part I bolded - Corn, or any other food, does not trick your body into thinking it is gluten.

[SoL]

On 11/9/2016 at 6:10 PM, GFinDC said:

 

[SoL]

17 hours ago, Jmmc said:

Hi Bryan, you sound like you are in severe pain??.  I don't know if you are celiac or if you are just intolerant but when I felt like you did my body was covered in an itchy oozing rash? and I couldn't get a diagnosis and my #1 priority became just getting rid of the pain and agony I was feeling?. And I did that by cutting everything out of my diet and eating nothing for awhile but bone broth with chicken breast, carrots, onions -- so really chicken soup, very well cooked peas and carrots with ground beef, and sweet potatoes.  Avocado smoothies with coconut milk for breakfast with a banana sat okay some days but I lost 50 lbs in around 6 months or so.  It is drastic but for now you need to cut out ALL gluten, ALL sugar, because sugar is exacerbating your inflammation, ALL dairy, because dairy is doing the same, ALL eggs, because eggs are also a source of inflammation, CORN, because right now your system is seeing corn as gluten, QUINOA, even though it is supposed to be gluten free, because your system is seeing it as gluten as well, RICE, for the same reason, WHITE POTATOES, they are not good -- too much starch, you may never be able to eat them again!  SO NO FRENCH FRIES!!  ALL fresh vegetables and fruits, just for the time being, because they are full of sugars and starches that are hurting you right now, ALL beans and legumes and nuts as they are too gassy for your system right now, ALL soda drinks!!!! Don't ever reintroduce them!!!!  You may have an overgrowth of yeast and also they cause inflammation and could be contributing to your pain!! ALL processed, canned, frozen, packaged and fast food!!  Eat nothing but fresh food!!!  Is it hard?  At first. Is it worth it?  Do you want to be pain free?  No food is worth the pain you are suffering!  And DO NOT eat the gluten free packaged foods!!  They are full of garbage that will make you sicker!! ?? Once you feel better, like in 4 weeks, slowly begin to reintroduce one item per week back in to your diet. If you feel recurring pain, remove it. It will take discipline and perseverance but you will be happy you did it and you will feel better than you have ever felt in your life if you stick to your new fresh, real food diet. No gluten, no dairy (coconut milk is awesome!  Make pumpkin pie smoothies for breakfast with canned pumpkin!!  -- no yogurt tho?), no white potatoes, no processed or canned food (canned pumpkin is the exception!?)  And my final word of advice is does it really matter if you are diagnosed or not if you follow a strict no gluten regimen and you feel great???  Oh and one last caution, if you are using ANY over the counter pain or inflammation medications like Tylenol or Ibuprofen or Naproxen QUIT. They could be contributing to your upper GI pain!!  And research, research, research!  Good luck in your journey to recovery my friend! ?

This sounds like hell on earth. This is the ultimate route I wanted to not take, the candida route. This is so extreme that I feel like there are literally only a hand full of people that can actually follow through with this.. The thing I don't like about this idea, the thing I will not accept is.. there are so many different ways people go about this. For instance you said bananas and carrots are okay. However, I hear that all fruit and simple forms of sugar is not good, white sugar, fruit sugar, sugar from carrots, ect. I'm going to give Gluten free a solid month and try reintroducing it. I might even do two months before I do. If that doesn't work then I'll try this bizarre remedy. I appreciate your comment, but that is just so hard to throat down and accept.. I don't eat dairy, and I am going to stay away from sugary foods. I don't drink pop at all. some of these things are already natural to me. I will however take some of these foods out. Eggs, quinoa, brown rice, and white potatoes are just so hard to take out. ALSO!!! where do I get bone broth, this stuff doesn't exist anywhere. All i see is chicken/beef broth. I have Bone Broth Protein from Dr. Axe, it's just so expensive for so little servings..

Thank you

Bry

[SoL]

On 11/9/2016 at 6:24 PM, gcg27 said:

Hi Bryan, i posted something similar as you described in this same section of the forum. Look for the title " withdrawll when reintroducing gluten? ". I've been experiencing this same symptoms you said for a year, one day for no reason apparent it started to happend. If all test's  result OK and clinical advise is not helping you, i can tell you my friend, you have to start a elimination diet, gluten sensitivity may be the root of your nightmares. It is clear that you are eating something that your body does not tolerate well and then as as consencuence you get the ugly response of the antibodies working against you. 
I believe FODMAPS diet or Keto diet are a good to go, the first diet is more detailed about what you can eat or not, second option is more simple: almost no carbs, except for green leafy veggies (fiber supplementation is advise to fight/avoid constipation). 
Also i think 2 weeks off gluten is to little time to let your gut start to repair itself as well detox your body from the intoxification state that you are living. 
If you are interested, i can give you more info about it.

Good luck!

Regards.
 

Thank you for this reply! I feel like this this one touches base with me on a personal level. Do you also experience the throat clearing symptom I mentioned? I specifically ask this because this is something I have not heard of when it comes to gluten symptoms. I would love to hear your experience with that. Also, do you have any other symptoms more or less than what I have going on?

Thank you very very much for mentioning FODMAPS and Keto. I am well aware of what Keto diet is. I think it's possible that I even started to get these symptoms right after I got off of a keto diet (when I was working out I went on this diet). Once I got off Keto I think this where I re-introduced gluten and I hear that this is where some people get more intolerant to Gluten. My I restarted fresh on gluten-free diet on Nov. 8th and I am going to go to my birthday, Dec. 8th. I suppose then I'll have my cake and eat it too lol. Do you think this one month is a long enough period of elimination? I could go longer if you think longer would be necessary. 

I am going to get serious about taking probiotics, eating fermented foods, and keeping dairy out of my diet (already don't eat it). I will also keep sugar out. I don't drink pop at all, never have. However, I do binge eat chocolate sometimes.. very hard because I have these cravings that are just unreal.

Thank you for your reply!!

Bry

[cyclinglady]

Brian,

Exactly what celiac tests were ordered for you?  I ask because, I test positive (even in follow-up testing for dietary compliance) only to the DGP IgA.  I have never had a positive on the TTG tests (IgA and IgG) which are the common celiac screening tests (few tests = lower cost).  The TTG is good, but does not catch all (like me).   

On your endoscopy...was it just visual or did the GI taken samples and sent them off to the pathologist?  

Your plan on giving the gluten-free diet is good just as long as you feel strongly that celiac disease was ruled out completely.  One month (if Non-celiac Gluten Intolerance) might be long enough to try the diet.  But if you had celiac disease, it can take months to YEARS to heal and reduce symptoms.  It is possible to stay on the diet, but it's much harder to do without a definitive diagnosis, especially when you are 23.  It can be done.  My hubby is not formally diagnosed.  He went gluten-free per the rather poor advice of his GP and my allergist.  It worked.  He's been gluten-free for 15 years (I was diagnosed in 2013).  But he'll be the first to say that I have had it way easier in terms of support from family, friends and medical.

Only you have all the necessary information to make a an informed choice.  I wish you well!  

P.S.  Keep all medical records for the rest of your life!  You and you alone, are your best health advocate! 

[SoL]

22 hours ago, cyclinglady said:

Brian,

Exactly what celiac tests were ordered for you?  I ask because, I test positive (even in follow-up testing for dietary compliance) only to the DGP IgA.  I have never had a positive on the TTG tests (IgA and IgG) which are the common celiac screening tests (few tests = lower cost).  The TTG is good, but does not catch all (like me).   

On your endoscopy...was it just visual or did the GI taken samples and sent them off to the pathologist?  

Your plan on giving the gluten-free diet is good just as long as you feel strongly that celiac disease was ruled out completely.  One month (if Non-celiac Gluten Intolerance) might be long enough to try the diet.  But if you had celiac disease, it can take months to YEARS to heal and reduce symptoms.  It is possible to stay on the diet, but it's much harder to do without a definitive diagnosis, especially when you are 23.  It can be done.  My hubby is not formally diagnosed.  He went gluten-free per the rather poor advice of his GP and my allergist.  It worked.  He's been gluten-free for 15 years (I was diagnosed in 2013).  But he'll be the first to say that I have had it way easier in terms of support from family, friends and medical.

Only you have all the necessary information to make a an informed choice.  I wish you well!  

P.S.  Keep all medical records for the rest of your life!  You and you alone, are your best health advocate! 

Cyclinglady, thank you so much for commenting your input. I appreciate anything and everything at this point. 

I believe I had IgA testing done. I wasn't aware of this until you asked me. When I read what you said I went into my test result history online and checked it out. I'm attaching a photo. If this is what you're asking, I suppose it did in fact come out fine. 

On my endoscopy I had a sample biopsy taken and they said that they have come up with nothing from it.

I know exactly what you mean when you say it's harder to go through with this when you aren't formally diagnosed.. I feel as if I could wasting time and focus, but I don't seem to have many options at this point. I will indeed try AT LEAST 1 month, if for some reason I feel like 2 months is necessary I'll shoot for it. I'm sorry to hear that both you and your husband have that issue.. but I'm sure you guys get along well when food options are out on the table. 

Thank you so much! 

[Xparatroop]

Bryan. This ain't rocket surgery. I just turned 63 and have had ALL of your symptoms most of that time. I know the "smile" when contemplating an end to the suffering. I have been medicated for every imaginable illness both physical and psychological with NO success nearly addicted to pain meds several times. A distant family member is full blown Celiac and I had spoken with him several times over the years about it but didn't act, until about 3 months ago. I say it "ain't rocket surgery" because I simply avoid all grains. By doing just that my  life is steadily improving at all levels. The list would be too long and I'm not keeping score BUT, I am steadily feeling better than I can remember ever feeling. Clarity of mind, NO anxiety or depression, physical pain, bowl issues, FATIGUE,etc. All returning to what I can only guess is "normal" since I've never known normal. This plague has cost me over the years, you have a chance to avoid a life of misery. Might I suggest SIMPLY avoiding all grains to begin? I'm pretty much "Paleo" I suppose but I don't yet spend allot time studying specific diets, I just avoid all grains. I am cautiously optimistic but with the progress so far I will never go back. It will take time for my body to heal, leaky gut for one example, but you can catch it early. I wish you well.

Brian Pierce  

[ravenwoodglass]

On 11/12/2016 at 3:18 PM, SoL said:

Cyclinglady, thank you so much for commenting your input. I appreciate anything and everything at this point. 

I believe I had IgA testing done. I wasn't aware of this until you asked me. When I read what you said I went into my test result history online and checked it out. I'm attaching a photo. If this is what you're asking, I suppose it did in fact come out fine. 

On my endoscopy I had a sample biopsy taken and they said that they have come up with nothing from it.

I know exactly what you mean when you say it's harder to go through with this when you aren't formally diagnosed.. I feel as if I could wasting time and focus, but I don't seem to have many options at this point. I will indeed try AT LEAST 1 month, if for some reason I feel like 2 months is necessary I'll shoot for it. I'm sorry to hear that both you and your husband have that issue.. but I'm sure you guys get along well when food options are out on the table. 

Thank you so much! 

If that was the only IGA test you had done then you haven't had a celiac panel run. That test is simply a test for you total IGA. That is supposed to be run with the panel to make sure you make enough IGA for the panel to be accurate. You do need to be eating gluten for the celiac testing. If you are already gluten free that will cause a false negative as your body will stop making antibodies.

Not everyone has to go to the extremes that some here have mentioned to heal from celiac. Some, like myself, only had to eliminate gluten.  I also avoid soy but not everyone has to. your chocolate should be fine as long as it is gluten free. I couldn't live without my nightly couple hand fulls of chocolate chips. It is best to go with as much whole foods as you can but unless you have intolerances to them eggs, qunioa, rice, pototes etc should be fine. If you do seem to have issues with any food drop it and then reintroduce it after you have healed. Not all intolerances are forever. I was overjoyed to find after about 6 months that I could eat dairy again without problems, for example.

[blueeyedapple]

ooops.  I responded on the wrong thread.

 

[cstark]

On ‎11‎/‎9‎/‎2016 at 4:51 PM, SoL said:

Somewhere down the line I started to experience something very strange with my head. Many times before I ate my head would feel "jared". It's like my eyes wanted to roll back into my head and have a seizure, but what would I know, I never had one. Sometimes I thought I would fall on the ground. This would also happen when I would hear something loud or high pitch, a baby screaming, motorcycle going by, or if someone were to throw a beer bottle away in the garbage if it hit another bottle (making the glass hitting each other).

Do you know what happened during these "episodes" other than the auditory perceptions? Seizures are not fun man, been through them myself after eating gluten.  Then you feel fuzzy in the head for a while afterwards until your brain turns back on.  Then when your brain turns back on, it feels as if your brain is trying to catch up for lost time going into hyper mode.  It's crazy, I've been there.  Thankfully, I have never lost consciousness during an episode as I was fully aware of my surroundings, just could not respond to anything.

Before you try going gluten free, get at least the full Celiac panel blood work FIRST.  If you want the official Gold Standard for a diagnosis, do it BEFORE going gluten free.  As someone previously stated, reintroducing gluten after being gluten free could really making symptoms higher in severity.   

When you do go gluten free, what has already been mentioned about eating meat and veggies may be a good way to jump start the healing process for your body.  It will help in detoxifying your body of anything hanging out just to hang out.  Wish you all the luck and I will praying for you.