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Symptoms for 3 years.

TylerB
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TylerB Newbie
TylerB
Posted

 

Hey everyone!

I'm feeling pretty down and frustrated right now, and thought I would finally take the plunge to join this site and see if I could get some advice and thoughts. Basically I've been struggling with a lot of symptoms for around 3 or so years now, and not all of them are digestive issues.. My main issues I'll list below.

- Almost constant stomach gurgling/rumbling in stomach, intestines and even what feels sometimes near to my anus

- Nausea (though I never vomit)

- Constant belching, especially after eating most foods, and then weird smelling gas.

- Foul/weird smelling stools (Sorry, but I'm sure most here have been there!)

- Constipated a lot and then sudden diarrhea now and again.

- Having to go on the loo 3 times a day often.

- Feeling tired/fatigued all the time + random brain fog daily

- Daily muscle fasciculations all over my body (Perhaps suggest malabsorption or vitamin deficiency?)

The only test I've had done over the last few years is a Barium swallow, which didn't show nothing abnormal. I was supposed to go for an endoscopy earlier this year but then Covid happened. Do the symptoms sounds like it could be a sensitivity or allergy to gluten? Really appreciate any feedback and hope to hear from some of you soon.

Tyler

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trents Grand Master
trents
Posted

Your symptoms are classic for Celiac Disease.

Sharke Rookie
Sharke
Posted

I was diagnosed with celiac earlier this year, and I can tell you that I have still, most of those symptoms. In fact, "Daily muscle fasciculations all over my body" has been one of my symptoms, but not until now have I thought it could be related to everything else.

It does in fact seem you have a gluten intolerance, to be diagnosed you'll most likely need bloodwork, gastroscopy or endoscopy, or all three depending on how bad the doctor thinks your symptoms are.

TylerB Newbie
TylerB
Posted
  • Author

 

With the way the world is right now I might be waiting a hell of a long time for any tests to come around, and I know they cost a small fortune if you go privately! I might just see if I can go gluten free for a while and see if my symptoms improve. Would a month be enough to potentially notice any difference do you think? Though with a lockdown here in the UK happening again even getting gluten free foods might be a hell of a challenge right now.

6 minutes ago, Sharke said:

I was diagnosed with celiac earlier this year, and I can tell you that I have still, most of those symptoms. In fact, "Daily muscle fasciculations all over my body" has been one of my symptoms, but not until now have I thought it could be related to everything else.

It does in fact seem you have a gluten intolerance, to be diagnosed you'll most likely need bloodwork, gastroscopy or endoscopy, or all three depending on how bad the doctor thinks your symptoms are.

I can have them in my legs one moment and then in my shoulder the next. I've even had the twitching in my arse cheeks and neck, wherever there's muscle basically! They drive me insane at times as they often feel like a butterfly flapping it's wings underneath my skin or something.

trents Grand Master
trents
Posted

The problem with going gluten-free before testing is that it will invalidate the tests. You need to be eating a significant amount of gluten daily for at least 6 weeks for the testing to be valid. Another option is ordering a home test kit and send the samples off to a lab for testing. But I hear your pain. It's a dilemma in the present COVID situation.

Sharke Rookie
Sharke
Posted
1 hour ago, TylerB said:

 

With the way the world is right now I might be waiting a hell of a long time for any tests to come around, and I know they cost a small fortune if you go privately! I might just see if I can go gluten free for a while and see if my symptoms improve. Would a month be enough to potentially notice any difference do you think? Though with a lockdown here in the UK happening again even getting gluten free foods might be a hell of a challenge right now.

I can have them in my legs one moment and then in my shoulder the next. I've even had the twitching in my arse cheeks and neck, wherever there's muscle basically! They drive me insane at times as they often feel like a butterfly flapping it's wings underneath my skin or something.

Yeah, my upper arms and hands will twitch, sometimes uncontrollably.

Also like said above, you need to have been eating gluten for a month or more for any tests to come back conclusive.

Neytiri Explorer
Neytiri
Posted
On 11/1/2020 at 5:40 PM, TylerB said:

 

Hey everyone!

I'm feeling pretty down and frustrated right now, and thought I would finally take the plunge to join this site and see if I could get some advice and thoughts. Basically I've been struggling with a lot of symptoms for around 3 or so years now, and not all of them are digestive issues.. My main issues I'll list below.

- Almost constant stomach gurgling/rumbling in stomach, intestines and even what feels sometimes near to my anus

- Nausea (though I never vomit)

- Constant belching, especially after eating most foods, and then weird smelling gas.

- Foul/weird smelling stools (Sorry, but I'm sure most here have been there!)

- Constipated a lot and then sudden diarrhea now and again.

- Having to go on the loo 3 times a day often.

- Feeling tired/fatigued all the time + random brain fog daily

- Daily muscle fasciculations all over my body (Perhaps suggest malabsorption or vitamin deficiency?)

The only test I've had done over the last few years is a Barium swallow, which didn't show nothing abnormal. I was supposed to go for an endoscopy earlier this year but then Covid happened. Do the symptoms sounds like it could be a sensitivity or allergy to gluten? Really appreciate any feedback and hope to hear from some of you soon.

Tyler

Dear Tyler,

The best solution, as you said, would be to have an endoscopy done, it's really important : you could have ulcers, IBS, leaky gut, etc. 

As concerns the "brain fog", you may have anemia, mononucleosis, low blood pressure, etc. There are too many pathologies that have such symptoms : I suggest you a complete blood test.

As regards your muscles instead, you probably have peripheral neuropathy, it's very common and treatments are varied : from antidepressants to SNRI to opioids and so on. Discuss with your doctor/specialist about these possibilities, it's fundamental.

If you would like more pieces of info about peripheral neuropathy, I suggest you to consult this link :

https://en.m.wikipedia.org/wiki/Peripheral_neuropathy

Hope to help ;)

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Jan Meindfak Apprentice
Jan Meindfak
Posted
On 11/1/2020 at 6:31 PM, Sharke said:

I was diagnosed with celiac earlier this year, and I can tell you that I have still, most of those symptoms. In fact, "Daily muscle fasciculations all over my body" has been one of my symptoms, but not until now have I thought it could be related to everything else.

It does in fact seem you have a gluten intolerance, to be diagnosed you'll most likely need bloodwork, gastroscopy or endoscopy, or all three depending on how bad the doctor thinks your symptoms are.

Those fasciculations are killing me, good to know I'm not alone! I get them every night, but they get me during the day as well occasionally.

Do you still have them, or did they disappear after going gluten free? 

I'm asking because I've been on a diet for 8 months now, and despite having normal antibodies, every vitamin and mineral, and even electromyography they don't seem like they're about to go away! 

And for the OP: you really might want to go privately for the endoscopy. The sooner the better. Not really that expensive considering it's a matter of your health, and nobody except for you can take care of it properly. Not to mention the staff is nicer when you pay 😂

Kate333 Rising Star
Kate333
Posted

Hi Tyler.  A few suggestions:

Ask your primary care doctor to order a gluten antibody blood test.  Here in the USA, it is called TTG-IGA and costs roughly $100 out of pocket if purchased online through a home test kit program.  The test is a simple, highly reliable, screening tool to tell whether you have (or hopefully don't have) a high probability of celiac disease.  If this test result is positive, your doc will likely refer you to a gastro specialist for an upper endoscopy to assess any celiac disease-related gut abnormality and, depending on the findings of that procedure, may recommend a strict gluten-free diet.  You don't need to be gluten-free to get the blood test but you will have to eat G before the endoscopy.  

I can't speak to all your symptoms, but I can tell you from personal experience that chronic fatigue, brain fog, indigestion/upset stomach, muscle aches/pain are all symptoms of severe, chronic anxiety/depression (as well as a variety of many other conditions, including celiac disease/gluten issues).  You mention you have been suffering with these problems for 3 years.  Constant health concerns/worries for that long a period of time (understandably magnified by the pandemic) could play a big role in causing many of these symptoms.  So take a look at your lifestyle, sleep, overall diet (aside from gluten consumption).  Do you sleep well every night?  Do you eat healthy diet? Do you get exercise?  Regardless of the root cause, I hope you find a definitive diagnosis and effective treatment to relieve your suffering soon.    

DJFL77I Experienced
DJFL77I
Posted

try magnesium 

Meggannn Rookie
Meggannn
Posted
On 11/1/2020 at 4:40 PM, TylerB said:

 

Hey everyone!

I'm feeling pretty down and frustrated right now, and thought I would finally take the plunge to join this site and see if I could get some advice and thoughts. Basically I've been struggling with a lot of symptoms for around 3 or so years now, and not all of them are digestive issues.. My main issues I'll list below.

- Almost constant stomach gurgling/rumbling in stomach, intestines and even what feels sometimes near to my anus

- Nausea (though I never vomit)

- Constant belching, especially after eating most foods, and then weird smelling gas.

- Foul/weird smelling stools (Sorry, but I'm sure most here have been there!)

- Constipated a lot and then sudden diarrhea now and again.

- Having to go on the loo 3 times a day often.

- Feeling tired/fatigued all the time + random brain fog daily

- Daily muscle fasciculations all over my body (Perhaps suggest malabsorption or vitamin deficiency?)

The only test I've had done over the last few years is a Barium swallow, which didn't show nothing abnormal. I was supposed to go for an endoscopy earlier this year but then Covid happened. Do the symptoms sounds like it could be a sensitivity or allergy to gluten? Really appreciate any feedback and hope to hear from some of you soon.

Tyler

I know how you feel. I just had my endoscope last week and fingers crossed I get a diagnosis soon! I have nearly the same symptoms as you. So frustrating, definitely sound like celiac

Sharke Rookie
Sharke
Posted
On 11/2/2020 at 6:44 PM, Jan Meindfak said:

Those fasciculations are killing me, good to know I'm not alone! I get them every night, but they get me during the day as well occasionally.

Do you still have them, or did they disappear after going gluten free?

I've yet to get some relief of the symptoms of my celiac. I still have most, if not more than when I was first diagnosed.

I'm still losing weight (driving on 40 lbs (18.1437 kg) lost since April of this year. Constant hunger, feeling like my stomach is empty even though I just ate, headaches, muscle spasms, etc.

I've only been hardcore adamant on avoiding gluten for the past 2 weeks (was diagnosed 4 months ago), so I know during that time I'd had gluten mistakenly, so we'll see where my symptoms are at after 1 month or 3 gluten free. If nothing changes, then back to the doctor I go.

I would recommend you make another appointment with your doctor, and at the very least, get them to assign to bloodwork to see why you still have the symptoms, or if there is in fact any gluten still making it's way out.

Good luck to you!

starcaster2358 Rookie
starcaster2358
Posted

Hello Tyler

Corn has a similar genetic makeup as gluten. Make sure you are not eating corn.  That is, corn in any form. This website is a life saver. glutenfreesociety.org 

Dr.Osborne is amazing!  I recommend that website to every person that is a celiac or gluten sensitive.. there is a wealth of info on the site. 

The more informed you are about what foods and supplements to take, the better your quality of life will be.   Please check out the website  glutenfreesociety.org 

I wish you well 🥰

Sue

 

 

trents Grand Master
trents
Posted
(edited)

All cereal grains contain gluten but the gluten is different in each one. The gluten in wheat, barley and rye (and for some people, oats also) is very similar and is what causes the celiac reaction. So in common parlance "gluten" has come to refer the gluten in wheat, barley, rye and maybe oats. The gluten in corn is dissimilar enough to the gluten in those other grains so as not to be considered a celiac offender per se. But corn may cause other problems for some people that are not of a celiac nature.

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted
On 11/5/2020 at 8:41 AM, starcaster2358 said:

Hello Tyler

Corn has a similar genetic makeup as gluten. Make sure you are not eating corn.  That is, corn in any form. This website is a life saver. glutenfreesociety.org 

Dr.Osborne is amazing!  I recommend that website to every person that is a celiac or gluten sensitive.. there is a wealth of info on the site. 

The more informed you are about what foods and supplements to take, the better your quality of life will be.   Please check out the website  glutenfreesociety.org 

I wish you well 🥰

Sue

 

 

The villi in celiacs have been shown in study after study to recover after excluding gluten found in wheat, rye and barley, but while patients did eat corn. The gluten in corn (zein) is not considered by any major celiac researchers or celiac organization to be toxic or unsafe for those with celiac disease. Of course there are some people who have a corn allergy, or intolerance, but that would be considered a separate issue. I had temporary corn intolerance until my gut healed after going on a gluten-free diet. 

starcaster2358 Rookie
starcaster2358
Posted
9 hours ago, starcaster2358 said:

Hello Tyler

Corn has a similar genetic makeup as gluten. Make sure you are not eating corn.  That is, corn in any form. This website is a life saver. glutenfreesociety.org 

Dr.Osborne is amazing!  I recommend that website to every person that is a celiac or gluten sensitive.. there is a wealth of info on the site. 

The more informed you are about what foods and supplements to take, the better your quality of life will be.   Please check out the website  glutenfreesociety.org 

I wish you well 🥰

Sue

 

 

 

2 hours ago, Scott Adams said:

The villi in celiacs have been shown in study after study to recover after excluding gluten found in wheat, rye and barley, but while patients did eat corn. The gluten in corn (zein) is not considered by any major celiac researcher or celiac organization to be toxic or unsafe for those with celiac disease. Of course there are some people who have a corn allergy, or intolerance, but that would be considered a separate issue. I had temporary corn intolerance until my gut healed after going on a gluten-free diet. 

Hi Scott,

This may be of some interest to read. I find Dr.Osborne very very informative and through in his studies of gluten.

https://www.glutenfreesociety.org/is-corn-gluten-really-safe-for-those-with-gluten-sensitivity/

Scott Adams Grand Master
Scott Adams
Posted

I've looked at his site before, and looked again. Nothing new there, and he cites a handful of older studies, some of which have a very small numbers of participants. The vast majority of celiacs can eat corn without issues, but some celiacs may need to exclude it and other grains. The problem I have with his claim is that he ties it to GMO corn without offering any evidence, he's pushing the sale of his books and supplements, and pushes the incorrect idea that all celiacs cannot eat corn, which is clearly false. I eat corn daily, and just had corn tortillas with breakfast...I have zero issues, and I have both DQ2 and DQ8 markers.

Flash1970 Apprentice
Flash1970
Posted
On 11/1/2020 at 8:40 AM, TylerB said:

 

Hey everyone!

I'm feeling pretty down and frustrated right now, and thought I would finally take the plunge to join this site and see if I could get some advice and thoughts. Basically I've been struggling with a lot of symptoms for around 3 or so years now, and not all of them are digestive issues.. My main issues I'll list below.

- Almost constant stomach gurgling/rumbling in stomach, intestines and even what feels sometimes near to my anus

- Nausea (though I never vomit)

- Constant belching, especially after eating most foods, and then weird smelling gas.

- Foul/weird smelling stools (Sorry, but I'm sure most here have been there!)

- Constipated a lot and then sudden diarrhea now and again.

- Having to go on the loo 3 times a day often.

- Feeling tired/fatigued all the time + random brain fog daily

- Daily muscle fasciculations all over my body (Perhaps suggest malabsorption or vitamin deficiency?)

The only test I've had done over the last few years is a Barium swallow, which didn't show nothing abnormal. I was supposed to go for an endoscopy earlier this year but then Covid happened. Do the symptoms sounds like it could be a sensitivity or allergy to gluten? Really appreciate any feedback and hope to hear from some of you soon.

Tyler

Hi Tyler,  The easiest test to detect celiac disease is a blood test. I was anemic for years. Couldn't get in the normal range. Also had thyroid disease and couldn't get enough thyroid to be absorbed. Brain fog was rampant, thought I was losing my mind. My endocrinologist, insisted that I go to a gi specialist. When I told him my symptoms, he said that he was 99% sure I had celiac disease. After a blood test, he called and told me I had celiac. He did do endoscopy and colonoscopy for sure, but they just confirmed everything. 

I followed the gluten free diet. I didn't feel better for at least 2-3 months. Finally about 4 months in, I started to feel better. I didn't have the inflammation, pain etc. Unfortunately, brain fog and fatigue remained. They finally went away, when I went totally grain free. 

So now I just eat a balanced diet of whole foods. Not many processed foods because they all have rice or corn flour in them. Lots of paleo and keto recipes that you can use. I don't feel like I'm missing anything. My life is not food centered, so I have lots of other interests. I just enjoy what I can eat.  

Good luck to you, but have the blood test, so you know for sure. I believe there's a home test you can order.

 

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But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. 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OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
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