Recent Diagnosis/Peculiar Symptoms

[Celiomniac]

Good afternoon,

   I was recently diagnosed via biopsy indicating atrophic mucosa and increased lymphocytes followed by a positive ttg iga blood test.  It surprised me in a way, as I didn’t have what I thought were the stereotypical GI issues, but on the other hand, I became lactose intolerant 2.5 years ago, for some reason had to begin supplementing my vitamin D to keep it above 30 and suffered with sleep maintenance insomnia, fatigue and brain fog regularly.  
 

In September I began having some random muscle weakness/fatigue (subjective) that seemed to stick to one side or the other. One arm and one leg.  Muscle twitches all over from calves to neck.  Tingling feet sometimes.  Most often on 2 mile walks with dogs.   Acid reflux and palpitations became bad enough (I never had any acid reflux like this previously and palpitations were few and far between) I sought advice from my doc.  It took about a week to get it under control with Pepcid and Prilosec.  Bloodwork was mildly anemic or very low normal.  12.8 Hgb and 4.3 Rbc.  I’m an active and healthy 46 yo male.  Iron and b12 were 117 and 440, respectively.  Sodium, Potassium, etc were all normal.   A fecal occult came back positive which led me to the endoscopy and colonoscopy.  

I have been seeing a neurologist for some neck pain issues over past 2 years   Had an mri and brain scan 1.5 years ago which only showed mild disc bulging and normal for age degenerative changes   Recently he sent me for pt which didn’t really solve anything   My issues are episodic and never seem to occur when I’m in for treatment   

I began gluten free 2 weeks ago.  It’s difficult but I’m fortunate to have an amazing wife who is taking this seriously and making it much easier for me. I’m still having the muscle weakness issues that come and go.  Tingling in feet comes and goes.  I thought it might be sciatica as I’ve had some minor back pain on and off, too, but there isn’t really any leg pain and it wouldn’t explain the inclusion of the arm feeling the same way.  
 

Any thoughts?  

[Celiomniac]

Just wanted to add that I was found to have mild hypothyroidism 2 years ago and am on levothyroxine, keeping my TSH around 3.  Also have hypertension and take valsartan for this.  
 

I have a follow up with my neurologist on Monday so I’m not sure if I should push for more scans or is this looking more like celiac related symptoms.  

[trents]

All of the symptoms and lab value irregularities you describe could be related to celiac disease. They are all well documented problems frequently accruing from or associated with celiac disease. Most or all of the things you mention may have a vitamin/mineral deficiency basis. Celiac Disease damage the villi lining the small bowel which is where essentially all nutritional elements are absorbed and pass into the bloodstream where they are then carried to the various tissues of the body. Even though you may be eating well, the nutrition in your diet is not being absorbed. You really need to start taking some heavy duty vitamin and mineral supplements and make sure they are gluten free. I would suggest taking an adult multi and B Complex to start with. Costco is an excellent source for gluten-free vitamins and supplements.

Aside from that, getting to the point where you are truly eating gluten-free generally involves a significant educational component as wheat/barley/rye are found in the food chain in places you would never expect, like canned tomato soup and most soy sauces. And even when gluten is not an intentional ingredient, it can wind up in food through coming in contact with gluten containing foods in the growing, transportation, storage and production practices of the food industry chain. You should get in the habit of checking all labels and avoid eating out. What if, for instance, you go to a fast food restaurant and order a plain burger paddy thinking that you will avoid the gluten in the bun? But since that burger paddy was cooked on the same grill as the breaded chicken breast it will now be contaminated with gluten. The goal must be not just to eliminate major sources of gluten intake but all traces of it if you are to experience healing of the small bowel lining. Wheat starch can also be found in meds and supplements. Take nothing for granted. Always check things out.

Aside from that, the healing of the villi in the small bowel can take time - typically months and even a couple of years. So don't set it back by being less than diligent in avoiding gluten.

[RMJ]

Celiac disease can certainly have neurological symptoms.  They can take a while to heal once you are gluten free.

[GFinDC]

Hi,

Lactose intolerance can be caused by celiac disease damage to the villi lining of the small intestine.  Those villi make an enzyme called lactase that breaks down lactose, the sugar in cow dairy.  With the villi damaged by celiac, the enzyme isn't made and the lactose sugar gets eaten by bacteria, which seem to really love it.  Those bacteria cause GI symptoms with their vigorous reproductive activities.

B vitamin shortages and mineral shortages can cause lots of symptoms.  Vitamin D is also a common enough problem for celiacs.  Vitamin D deficiency can cause lots of unpleasant symptoms.

There is also an issue for some people with celiac where they get gluten ataxia, which is an AI attack on nerves and the brain.  Gluten ataxia is much rarer than the vitamin deficiency caused nerve problems though.

It's good your wife is supportive.  She can be a big help in preventing cross contamination of your food with gluten.  She also may need to brush her teeth before smooching if she has been eating gluten herself.

The simplest diet for people new to gluten-free is a whole foods diet of meats, veggies, eggs, nuts and fruit.  Often people do better by avoiding oats and all dairy too.  Processed foods tend to be risky and have lots of ingredients to check on the label.  So it's best to limit or totally avoid them for a few months.  You may find you are eating a much healthier diet than before.

One thing to keep in mind is your meds may need to adjusted over time.  When your gut heals and starts absorbing things more efficiently it's possible the meds may need downsized.

Edited December 19, 2020 by GFinDC

[Kate333]

Hi Celiomniac.  As others have noted above, many of the sx you describe could be celiac disease-related.  But they are also classic physical symptoms of chronic, severe anxiety/depression, esp. the emotional and physical fatigue, insomnia, "weird" muscle aches/pains/weakness, neuropathy, and indigestion. At least that's been my personal experience. 

I was dx late last year, began gluten-free diet in early 2020, happily noticed some improvement after a sharp reduction in blood test G antibody numbers....then WHAM!! along came this damn pandemic & it's understandable health paranoia, which sent my long-term, chronic anxiety/insomnia issues skyrocketing through the roof and really made me feel like I was back to Square One.  My anxiety is now so bad that I plan to begin therapy and antidepressant meds in Jan. and I really need to do MUCH better to avoid depressing TV/internet news.  I hope the therapy/meds will at least help me cope better with some symptoms as I get through this pandemic/economic crisis.  One health crisis at a time is ENOUGH!! 

I'm glad you have your supportive spouse and your dogs to comfort you on your healing journey.  

[Kate333]

2 hours ago, RMJ said:

Celiac disease can certainly have neurological symptoms.  They can take a while to heal once you are gluten free.

Hi RMJ, did you have any of those symptoms.  If so, how long did it take after your gluten-free diet for you to notice improvements or feel you had returned to "normal" (or near-normal) in that dept.?

[Celiomniac]

3 hours ago, trents said:

All of the symptoms and lab value irregularities you describe could be related to celiac disease. They are all well documented problems frequently accruing from or associated with celiac disease. Most or all of the things you mention may have a vitamin/mineral deficiency basis. Celiac Disease damage the villi lining the small bowel which is where essentially all nutritional elements are absorbed and pass into the bloodstream where they are then carried to the various tissues of the body. Even though you may be eating well, the nutrition in your diet is not being absorbed. You really need to start taking some heavy duty vitamin and mineral supplements and make sure they are gluten free. I would suggest taking an adult multi and B Complex to start with. Costco is an excellent source for gluten-free vitamins and supplements.

Aside from that, getting to the point where you are truly eating gluten-free generally involves a significant educational component as wheat/barley/rye are found in the food chain in places you would never expect, like canned tomato soup and most soy sauces. And even when gluten is not an intentional ingredient, it can wind up in food through coming in contact with gluten containing foods in the growing, transportation, storage and production practices of the food industry chain. You should get in the habit of checking all labels and avoid eating out. What if, for instance, you go to a fast food restaurant and order a plain burger paddy thinking that you will avoid the gluten in the bun? But since that burger paddy was cooked on the same grill as the breaded chicken breast it will now be contaminated with gluten. The goal must be not just to eliminate major sources of gluten intake but all traces of it if you are to experience healing of the small bowel lining. Wheat starch can also be found in meds and supplements. Take nothing for granted. Always check things out.

Aside from that, the healing of the villi in the small bowel can take time - typically months and even a couple of years. So don't set it back by being less than diligent in avoiding gluten.

Thanks for taking the time to respond.  I’ve been shocked by how pervasive gluten is our food supply.  It’s been a serious task to do just as you say, eliminate all traces.  I’m sure mistakes will be made but we are trying.  
 

I am taking some supplements.  I’ve been on a Centrum Men’s for several months and recently added a b12 1000mcg, 2k unit Vitamin D and fish oil.  All gluten free.  I’ll add that my diet has been pretty well rounded prior to this.  Lots of fruit, vegetables and nuts.  Very little in the way of processed meats, etc.  

2 hours ago, RMJ said:

Celiac disease can certainly have neurological symptoms.  They can take a while to heal once you are gluten free.

Thank you.  I’ve learned that it will take some time, assuming it’s the cause of the problem to begin with. 

[Celiomniac]

2 hours ago, GFinDC said:

Hi,

Lactose intolerance can be caused by celiac disease damage to the villi lining of the small intestine.  Those villi make an enzyme called lactase that breaks down lactose, the sugar in cow dairy.  With the villi damaged by celiac, the enzyme isn't made and the lactose sugar gets eaten by bacteria, which seem to really love it.  Those bacteria cause GI symptoms with their vigorous reproductive activities.

B vitamin shortages and mineral shortages can cause lots of symptoms.  Vitamin D is also a common enough problem for celiacs.  Vitamin D deficiency can cause lots of unpleasant symptoms.

There is also an issue for some people with celiac where they get gluten ataxia, which is an AI attack on nerves and the brain.  Gluten ataxia is much rarer than the vitamin deficiency caused nerve problems though.

It's good your wife is supportive.  She can be a big help in preventing cross contamination of your food with gluten.  She also may need to brush her teeth before smooching if she has been eating gluten herself.

The simplest diet for people new to gluten-free is a whole foods diet of meats, veggies, eggs, nuts and fruit.  Often people do better by avoiding oats and all dairy too.  Processed foods tend to be risky and have lots of ingredients to check on the label.  So it's best to limit or totally avoid them for a few months.  You may find you are eating a much healthier diet than before.

One thing to keep in mind is your meds may need to adjusted over time.  When your gut heals and starts absorbing things more efficiently it's possible the meds may need downsized.

Thank you.   Oats, cooked with fairlife, and berries have been my daily breakfast for years.  I’ve switched to Bob’s Red Mill Oatmeal.  How would I know if Fairlife and gluten-free oats are a problem for me?

[Celiomniac]

48 minutes ago, Kate333 said:

Hi Celiomniac.  As others have noted above, many of the sx you describe could be celiac disease-related.  But they are also classic physical symptoms of chronic, severe anxiety/depression, esp. the emotional and physical fatigue, insomnia, "weird" muscle aches/pains/weakness, neuropathy, and indigestion. At least that's been my personal experience. 

I was dx late last year, began gluten-free diet in early 2020, happily noticed some improvement after a sharp reduction in blood test G antibody numbers....then WHAM!! along came this damn pandemic & it's understandable health paranoia, which sent my long-term, chronic anxiety/insomnia issues skyrocketing through the roof and really made me feel like I was back to Square One.  My anxiety is now so bad that I plan to begin therapy and antidepressant meds in Jan. and I really need to do MUCH better to avoid depressing TV/internet news.  I hope the therapy/meds will at least help me cope better with some symptoms as I get through this pandemic/economic crisis.  One health crisis at a time is ENOUGH!! 

I'm glad you have your supportive spouse and your dogs to comfort you on your healing journey.  

Thank you.  Good catch wrt depression and anxiety.  An endocrinologist I saw said the same thing.  After months of feeling poorly with no diagnosis or resolution I began to get anxious and mildly depressed.  I was on cymbalta for a number of months which helped my mood but eventually began to make me drowsy.  Now I’m on Wellbutrin.  A therapist was in the mix somewhere along the line and didn’t think I fit the criteria for an anxiety or depression diagnosis.  
 

Anyway, when all of the above listed symptoms came down on me in September I had been feeling reasonably well and was about to leave on a backpacking/mountaineering adventure. The reflux and palpitations essentially stopped my trip.   Well, that and the smoke from fires in the Sierra.  So in a roundabout way I’m saying that your suggestion is something I’m aware of but don’t think it’s responsible for the current crop of symptoms.  

[RMJ]

1 hour ago, Kate333 said:

Hi RMJ, did you have any of those symptoms.  If so, how long did it take after your gluten-free diet for you to notice improvements or feel you had returned to "normal" (or near-normal) in that dept.?

I have not had these symptoms, but they’ve been reported by plenty of people who post here.

[GFinDC]

2 hours ago, Celiomniac said:

Thank you.   Oats, cooked with fairlife, and berries have been my daily breakfast for years.  I’ve switched to Bob’s Red Mill Oatmeal.  How would I know if Fairlife and gluten-free oats are a problem for me?

Hi,

If you are having Gi symptoms then you would eliminate all possible food causes.  That is very simple as it just means you don't eat those foods for awhile to see if digestion or other symptoms improve.  Eliminating foods for a couple weeks is usually enough time to begin to see differences.

Edited December 20, 2020 by GFinDC

[knitty kitty]

Celiomniac,

Welcome to the forum!

As a newly diagnosed Celiac, you may be deficient or low in some vitamins and minerals.  Checking for deficiencies is part of proper follow up care for Celiacs.  Vitamin Deficiency symptoms are often overlooked by doctors.

I experienced severe vitamin and mineral deficiencies before being diagnosed with Celiac Disease.  Keep in mind, Celiac Disease causes malabsorption of nutrients, vitamins and minerals.  Even the gluten free diet can be lacking in vitamins and minerals.  The group of eight B vitamins are all water soluble and most cannot be stored in the body much longer than a month.  A deficiency of Thiamine (Vitamin B1) can occur in as little as nine days.  Usually deficiencies occur in multiple B vitamins and minerals.  Taking a B 100 Complex can help ensure you get enough B vitamins while your intestines heal. 

Thiamine deficiency symptoms can be very subtle and accrue over a period of time.  The symptoms you mentioned may be symptoms of low levels of the B vitamins, especially thiamine.  

 

I found some studies and articles that I hope you will find useful.  

 

"11 Signs and Symptoms of Thiamine (Vitamin B1) Deficiency"

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms

 

"Thiamine and Hashimoto's thyroiditis: a report of three cases"

https://pubmed.ncbi.nlm.nih.gov/24351023/

 

"The Impact of Thiamine Treatment on Generalized Anxiety Disorder"

https://m.scirp.org/papers/7555

 

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

"The Role of Vitamins and Minerals in Psychiatry"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

 

"Thiamine Deficiency and Benfotiamine Therapy in Brain Diseases"

https://biomedgrid.com/fulltext/volume3/thiamine-deficiency-and-benfotiamine-therapy-in-brain-diseases.000621.php

Hope this helps!

[trents]

You might want to cut out oats, at least for the time being, as about 10% of Celiacs react to oats like they do wheat, even oats that are not cross contaminated with wheat/barley/rye. Switch over to some other gluten free hot cereals such as corn grits, sorghum or buck wheat (not related to wheat). There are some delicious alternatives to oatsmeal.

Edited December 20, 2020 by trents

[Ivana]

15 hours ago, Kate333 said:

Hi Celiomniac.  As others have noted above, many of the sx you describe could be celiac disease-related.  But they are also classic physical symptoms of chronic, severe anxiety/depression, esp. the emotional and physical fatigue, insomnia, "weird" muscle aches/pains/weakness, neuropathy, and indigestion. At least that's been my personal experience. 

I was dx late last year, began gluten-free diet in early 2020, happily noticed some improvement after a sharp reduction in blood test G antibody numbers....then WHAM!! along came this damn pandemic & it's understandable health paranoia, which sent my long-term, chronic anxiety/insomnia issues skyrocketing through the roof and really made me feel like I was back to Square One.  My anxiety is now so bad that I plan to begin therapy and antidepressant meds in Jan. and I really need to do MUCH better to avoid depressing TV/internet news.  I hope the therapy/meds will at least help me cope better with some symptoms as I get through this pandemic/economic crisis.  One health crisis at a time is ENOUGH!! 

I'm glad you have your supportive spouse and your dogs to comfort you on your healing journey.  

I agree with you, Kate. I think it might be underestimated what a blow it is for our psyche to be diagnosed with celiac. I am not saying anxiety is a definitive cause, maybe it is a mix of things. But I too started experiencing neurological symptoms, like 3 days after the diagnosis, when I believe I had celiac for at least a decade (in retrospect). This was also after months of covid lockdown, a nagging pressure under ther ribs (which now I think could have also been stress, because it went away when I relaxed) which made me fear for my health all the time, etc. By the time I was diagnosed, I was already vulnerable and emotional, and the diagnosis just pushed me over the edge. I totally overreacted to it, feeling for weeks like now I have something that will make me totally sick (I never had symptoms, except for anemia) and my life will never be the same. I also, naturally, became very apprehensive around food, which deep down, I think, has an effect on even mentally strong people. And I had such feeling of dread constantly. Now I see how over the top such apprehensive thinking was, but the damage is done. Afterwards I started obsessing over these neurological symptoms (twitching, tension, ear pressure, skin sensations; in the first weeks I would also have that jerking movement with random parts of my body more than 10 times every night when I was drifting to sleep), and it became a vicious circle without a moment of respite for my brain. I hope when covid is over, and the world lightens up, my mood will also lift and things will improve. 
Anyway, I am not a doctor and can't rule out things, but I have actually noticed many people on this forum saying they got worse somehow after the diagnosis, and I think stress caused by it could also be a reason to consider. Anxiety centre website has good information on how the body becomes hyperstimulated and what to do for it.

I hope you will find the cause and relief soon, Celiomniac! 

[Kate333]

2 hours ago, Ivana said:

I agree with you, Kate. I think it might be underestimated what a blow it is for our psyche to be diagnosed with celiac. I am not saying anxiety is a definitive cause, maybe it is a mix of things. But I too started experiencing neurological symptoms, like 3 days after the diagnosis, when I believe I had celiac for at least a decade (in retrospect). This was also after months of covid lockdown, a nagging pressure under ther ribs (which now I think could have also been stress, because it went away when I relaxed) which made me fear for my health all the time, etc. By the time I was diagnosed, I was already vulnerable and emotional, and the diagnosis just pushed me over the edge. I totally overreacted to it, feeling for weeks like now I have something that will make me totally sick (I never had symptoms, except for anemia) and my life will never be the same. I also, naturally, became very apprehensive around food, which deep down, I think, has an effect on even mentally strong people. And I had such feeling of dread constantly. Now I see how over the top such apprehensive thinking was, but the damage is done. Afterwards I started obsessing over these neurological symptoms (twitching, tension, ear pressure, skin sensations; in the first weeks I would also have that jerking movement with random parts of my body more than 10 times every night when I was drifting to sleep), and it became a vicious circle without a moment of respite for my brain. I hope when covid is over, and the world lightens up, my mood will also lift and things will improve. 
Anyway, I am not a doctor and can't rule out things, but I have actually noticed many people on this forum saying they got worse somehow after the diagnosis, and I think stress caused by it could also be a reason to consider. Anxiety centre website has good information on how the body becomes hyperstimulated and what to do for it.

I hope you will find the cause and relief soon, Celiomniac! 

Spot on, Ivana!  Thanks so much for your response.   

It's far too easy to overlook or downplay anxiety/depression in general, let alone the role it can play in celiac disease.  I've read that sudden, severe anxiety or trauma can even trigger or "activate" full blown celiac disease in people who formerly had only a "dormant" genetic predisposition and no problems before those stressful events.  I am almost certain that happened in my life.

Regardless of the root cause of our distressing symptoms (depression/anxiety, celiac disease, pandemic stress, other medical issues), suffering is suffering and we all seek relief.    

For those interested, here is the website and anxiety link:  anxietycentre.com/anxiety-symptoms.shtml.   It features a really cool chart noting many typical physical symptoms of chronic stress and a very helpful video explaining how stress (esp. chronic or long-term) affects the entire body.  I've also found a helpful, funny YouTube video with Melissa Shepard, MD called "Surprising Physical Symptoms of Anxiety and Depression". 

I wish everyone healing and a better 2021! 

[Celiomniac]

Thanks for all of the thoughtful responses.  There’s so many pieces to this puzzle and it’s going to take a little time to put them all together.  I’m hopeful that the neurologist will have some insight that’s valuable, though I’m prepared for the canned response that celiac is a GI disease.  
 

Happy Holidays, all!   And yes, a better year ahead, in so many ways!

[Kate333]

1 hour ago, Celiomniac said:

Thanks for all of the thoughtful responses.  There’s so many pieces to this puzzle and it’s going to take a little time to put them all together.  I’m hopeful that the neurologist will have some insight that’s valuable, though I’m prepared for the canned response that celiac is a GI disease.  
 

Happy Holidays, all!   And yes, a better year ahead, in so many ways!

You're welcome!   

I saw a neuro months ago and after the eval./tests he said my symptoms (neuropathy, dizziness) were likely anxiety from a mix of recent celiac disease diagnosis and chronic, bad stress/insomnia.  But I admit I did feel reassured after consulting with him as I tend to be a "catastrophizer"/hypochondriac who ALWAYS assumes/fears the worst.😱😉   

BTW, you said in your earlier post that you're on Wellbutrin.  Just wondering: did it help and how long before you noticed an improvement in your mood?  My primary doc suggested Wellbutrin, but I've also heard Remeron is esp. good for chronic insomnia and anxiety issues and IBS/digestion issues.  Of course, the gluten-free diet is vital, but I could use a little "extra help" (at least short-term) with GI issues as my body slowly heals...LOL  

Sorry your backpacking/mountain-climbing plans had to be canceled but better safe than sorry.  I know how you feel.  I live in Northern CA and the lengthy fires/fire smoke season this year really did a big number on both my physical and mental health.🤢🤮😪 

[DJFL77I]

Not everything is caused by Celiac..

 

 

but most of it is....

[Celiomniac]

I'm on a really low dose of Wellbutrin (actually, the generic version, Bupropion) @ 75mg/2x daily.  I felt some positive effects early on, probably 6 months ago, though at this point I can't say that I really notice it doing anything at all.  Having said that, I don't typically feel like I need any extra help avoiding a feeling of depression, otherwise I'd probably consult my GP about increasing the dosage.

3 hours ago, DJFL77I said:

Not everything is caused by Celiac..

 

 

but most of it is....

LOL.  When you carry around a hammer, everything starts to look like a nail.  

[Kate333]

On 12/19/2020 at 5:18 PM, Celiomniac said:

Thank you.   Oats, cooked with fairlife, and berries have been my daily breakfast for years.  I’ve switched to Bob’s Red Mill Oatmeal.  How would I know if Fairlife and gluten-free oats are a problem for me?

Very likely your body will quickly tell you.. esp. your "second brain" (aka gut)..😉  That's how it usu. works with me but many folks aren't bothered by GI symptoms and some with celiac disease tolerate oats, dairy and many more foods without any problems.  Sadly, I'm not one of them and I really miss my Quaker Oats!!

[Kate333]

2 hours ago, Celiomniac said:

I'm on a really low dose of Wellbutrin (actually, the generic version, Bupropion) @ 75mg/2x daily.  I felt some positive effects early on, probably 6 months ago, though at this point I can't say that I really notice it doing anything at all.  Having said that, I don't typically feel like I need any extra help avoiding a feeling of depression, otherwise I'd probably consult my GP about increasing the dosage.

 LOL. When you carry around a hammer, everything starts to look like a nail.  

ROFL.  Nice comeback to previous post who said "everything is caused by celiac disease". 

Hmmm. celiac disease experts estimate that only 1-3% of the global population has celiac disease, whereas 75-90% of ER visits of all patients are attributed to extreme depression/health anxiety.  I seriously doubt ALL the folks running to ERs/doctors offices have celiac disease or NCDG issues.