Celiac Co-Morbidity Issues

[or27]

Hi all, 

I have been diagnosed with celiac disease for about 15 years now (since about 10 years old came out of chronic GI issues as a kid, always sick, etc.) I've had a few symptoms linger for some years now though:

I have early childhood memories of having low back pain, as in I couldn't sit on the floor in elementary school with other kids due to low back pain when sitting unsupported for long periods of time. Fast forward to early high school, and I had TMJ issues following a le forte procedure for jaw alignment. (Which by 2019 ended up in a total joint replacement of both TMJ joints due to severe degeneration/condylar reabsorption, and apparently the most common demographic is "females in their 20s. In late high school, I also started having dull hip pain that lasted through college. Orthos told me to "exercise less and stretch more" and that my scan was normal (sigh). Eventually, that mostly resolved with PT (now I have mild, dull stiffness and occasional sharp pain vs struggling to walk up stairs). Now recently, (the past 1-2 years) I've been dealing with mid back and neck pain and as of the past few weeks wrist pain. Physical therapists have described me as having hypermobile joints, and I'm not sure if I would describe my "pain" as traditional joint pain. My joints constantly pop (as in people in the room turn to look at me) and feel more dull stiffness than anything, and I'd describe my mid back pain as feeling like I can't take a deep breath as my back feels constricted and it feels like my vertebrae almost "rub" on each other uncomfortably. I also feel like all of my joints are uncomfortable if I sit for long periods of time and I have to move around.  (My mom has also had 3 spinal fusions from degenerative discs and also has arthritis.) 

The other issue long term I've dealt with is fatigue which seems to progress slowly over the years to a point where now I struggle to workout, a hobby I loved doing. This is, of course, a super vague symptom, but then the past few months I've had severe, chronic hives (mom history of chronic idiopathic hives).  My PCP referred me to rheumatology and allergy for the 3 of these symptoms (+ total joint replacement in my 20s) combined, but all inflammatory tests for rheumatoid-related conditions came back today as negative. The only thing that came up on blood tests, which has shown for several years, is low neutrophils (1.7 vs 1.9 lower bound accepted) and a "reversed" percentage of my WBCs making up lymphocytes (58% normal is under 40%) and neutrophils (32%, normal is above 48%), which upon googling, can be an autoimmune pattern. 

So long story short, I would love to know if anyone who has had a chronic history of fatigue + joint pain + possibly hives has come out with another comorbidity, possibly in the autoimmune realm? 

Thanks for any help!

 

[or27]

I should also mention that the only other thing to ever come back in a blood panel is pretty high iron about 1.5 years ago (IRON 233 ug/dL range is 30 - 160 ug/dL and IRON BINDING CAPACITY 447 ug/dL range is 230 - 404 ug/dL) but at the time I was taking vitamin C semi-regularly, so not sure if that was a contributing factor and I tested heterozygous for a hemochromatosis-contributing gene mutation and negative for the other. 

[Scott Adams]

Welcome to the forum!

Can I assume that you've been on a strict gluten-free diet since your diagnosis? Even small amounts of gluten, like you might get eating outside your home, could cause ongoing symptoms and issues.

It is interesting that you mention TMJ, as my mother who also has celiac disease has also had issues with TMJ for much of her life, but this symptom did improve after she went gluten-free.

The hives could be an allergy, or if you are getting some contamination possibly dermatitis herpetiformis, which is the skin condition associated with celiac disease. Have you ever had a dermatologist do a biopsy of the hives for DH? 

Some of your symptoms also sound like vitamin & mineral deficiencies, and maybe @knitty kitty could comment on this as well.

[or27]

Hi Scott nice to meet you! 

For more info—

Yes, for strict gluten free diagnosis— I definitely went through the learning curve in my earlier years, and I only eat out about once a week, and tend to gravitate to my “safe spots.” 

Yes, no one has questioned the root cause of my condylar reabsorption/TMJ issues. Most of my oral surgery team just assumed it was a result of my original surgery relapsing (bite reopening). The TMJ issues didn't occur until my late teens. 
 

The allergist didn’t refer me to dermatology for DH (actually thinks they are activated from the Covid-vaccine)

 

I appreciate the insight and your thoughts! 

[knitty kitty]

Hello, @or27, and welcome to the forum!

Your symptoms sound uncomfortable!  Have you been checked for Ehlers-Danlos syndromes?  Perhaps you may find some similar symptoms here....

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

And....

https://www.ehlers-danlos.com/2017-eds-classification-non-experts/oral-mandibular-manifestations-ehlers-danlos-syndromes/

And...

Evaluation of Temporomandibular Disorders and Comorbidities in Patients with Ehler-–Danlos: Clinical and Digital Findings

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6071363/

 

Have you had your thyroid checked? 

"What’s the Connection Between Chronic Hives and the Thyroid?"

https://www.healthline.com/health/ciu/chronic-hives-and-thyroid-connection

And...

Chronic urticaria and thyroid pathology

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7063156/

Since you've been on the gluten free diet for a long time, do be aware that vitamin and mineral deficiencies can occur on the gluten-free diet.  You may want to consider adding a B Complex supplement just to ensure you're getting enough micronutrients.  The eight B vitamins are water soluble and can be used up quickly when we are stressed or ill.  You may want to consider increasing your Omega 3 fats.  Calcium and magnesium are important to bone health.  Discuss supplementation with your doctor.

Hope this helps!

[or27]

25 minutes ago, knitty kitty said:

Hello, @or27, and welcome to the forum!

Your symptoms sound uncomfortable!  Have you been checked for Ehlers-Danlos syndromes?  Perhaps you may find some similar symptoms here....

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

And....

https://www.ehlers-danlos.com/2017-eds-classification-non-experts/oral-mandibular-manifestations-ehlers-danlos-syndromes/

And...

Evaluation of Temporomandibular Disorders and Comorbidities in Patients with Ehler-–Danlos: Clinical and Digital Findings

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6071363/

 

Have you had your thyroid checked? 

"What’s the Connection Between Chronic Hives and the Thyroid?"

https://www.healthline.com/health/ciu/chronic-hives-and-thyroid-connection

And...

Chronic urticaria and thyroid pathology

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7063156/

Since you've been on the gluten free diet for a long time, do be aware that vitamin and mineral deficiencies can occur on the gluten-free diet.  You may want to consider adding a B Complex supplement just to ensure you're getting enough micronutrients.  The eight B vitamins are water soluble and can be used up quickly when we are stressed or ill.  You may want to consider increasing your Omega 3 fats.  Calcium and magnesium are important to bone health.  Discuss supplementation with your doctor.

Hope this helps!

Nice to meet you too! I have peripherally considered EDS, but figured since I’ve never dislocated joints and haven’t had wound issues it may be unlikely? But a lot of the other symptoms seem really similar! The allergist actually checked my TSH and it was normal. I’ll definitely look at these vitamins! Thanks for all this info! 

[knitty kitty]

@or27,

Some other thoughts....

The hives might be a sign of high blood sugar levels in prediabetes.  I'd get hives and rashes and contact dermatitis before I was diagnosed with Type Two.    Niacinamide (the non-flushing form of Vitamin B3) is really good for skin problems.  

Mast Cell Activation Syndrome can cause hives.  Mast cells can be triggered by working out and getting sweaty, as well as being stressed emotionally.  Thiamine (Vitamin B1) helps mast cells not to degranulate. 

And Vitamin D deficiency will cause hives.

"Vitamin D deficiency in chronic idiopathic urticaria"

https://pubmed.ncbi.nlm.nih.gov/25780889/

Vitamin D helps calm the immune system, too.  

I'm glad the Ehrler-Danlos syndrome information might be a clue to help you on your journey.  

Keep us posted on your progress!  

[Wheatwacked]

 

10 hours ago, or27 said:

now I have mild, dull stiffness and occasional sharp pain. I also feel like all of my joints are uncomfortable if I sit for long periods of time and I have to move around. 

Nsaids can cause low neutrophils and I assume you take a lot for your pain. Autoimmune diseases (as evidenced by your hives) can cause high lymphocytes. Solve the hives. Prednisone would help your pains and the hives, but it might be difficult convincing your PCP to give it a trial run. In its defense prednisone is cheap, its effectiveness has been proven for something like 70 years, and sudden death or irreversible kidney and liver damage are not some of its negative side effects, as opposed to most of the expensive, dangerous drugs the pharmaceutical companies have replaced it with.

Quote

Drugs used to treat autoimmune disorders include anti-inflammatory agents such as prednisone   https://www.uspharmacist.com/article/autoimmune-disease

Had TMJ. Also Plantar Fasciitis. I had joint and muscle pain that would change location from day to day. I self-medicated with alcohol for about 40 years because my complaints were not taken seriously. At its worst in 2012, if I didn't move my head for more than five minutes my neck would lock up and I had to use my hands to move my head. The rest of my joints were also sticky. Could not stand more than 5 minutes and never slept more than 2 hours at a time. Aspirin worked for the pain if I laid still, 800 mg Ibuprofen I could move. Celebrex and other Nsaids were no better. After treatment for gout with oral Prednisone for 10 days I realized that I had been more active and mostly pain free for those 10 days and without the prednisone all the other pains returned. Went on 30 mg/day. Eventually, Thanksgiving 2014 started GFD and was able to reduce the prednisone to the current 5 to 10 mg/day.  I don't care; I am virtually pain free.  The addiction to alcohol went away the same week I started a gluten free diet.

I created a spreadsheet to track vitamins and minerals in my diet and found a lot that I was simply not eating enough of. Supplementation and diet changes have effectively reversed my malnutrition.

2 hours ago, knitty kitty said:

Vitamin D helps calm the immune system, too.

High plasma vitamin D mitigates overactive auto immune genes, although for an unknow reason the mainstream research only looks at greater than or less than 30 ng/ml despite that its effect only seems to kick in above 70 ng/ml. Hives is autoimmune. Poor sleep quality from your pain and hives might cause fatigue.  Your PCP blaming the COVID vaccine does not take into account your mother's story. Doctors like to discredit anecdotal evidence: "Your mother is your mother, and you are you".

I apologize for the ramble, but I understand your frustration.

Quote

Vitamin D Is Not as Toxic as Was Once Thought:   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

Quote

Many drugs may cause a chronic mild neutropenia e.g. nonsteroidal anti-inflammatory drugs, valproic acid.  https://bpac.org.nz/Supplement/2008/May/complete-blood-count.aspx#neutro

Quote

"Even high vitamin C intakes do not cause iron imbalance in healthy persons and probably in persons who are heterozygous for hemochromatosis."  https://econtent.hogrefe.com/doi/abs/10.1024/0300-9831.69.2.67?journalCode=vit

[or27]

12 minutes ago, Wheatwacked said:

 

Nsaids can cause low neutrophils and I assume you take a lot for your pain. Autoimmune diseases (as evidenced by your hives) can cause high lymphocytes. Solve the hives. Prednisone would help your pains and the hives, but it might be difficult convincing your PCP to give it a trial run. In its defense prednisone is cheap, its effectiveness has been proven for something like 70 years, and sudden death or irreversible kidney and liver damage are not some of its negative side effects, as opposed to most of the expensive, dangerous drugs the pharmaceutical companies have replaced it with.

Had TMJ. Also Plantar Fasciitis. I had joint and muscle pain that would change location from day to day. I self-medicated with alcohol for about 40 years because my complaints were not taken seriously. At its worst in 2012, if I didn't move my head for more than five minutes my neck would lock up and I had to use my hands to move my head. The rest of my joints were also sticky. Could not stand more than 5 minutes and never slept more than 2 hours at a time. Aspirin worked for the pain if I laid still, 800 mg Ibuprofen I could move. Celebrex and other Nsaids were no better. After treatment for gout with oral Prednisone for 10 days I realized that I had been more active and mostly pain free for those 10 days and without the prednisone all the other pains returned. Went on 30 mg/day. Eventually, Thanksgiving 2014 started GFD and was able to reduce the prednisone to the current 5 to 10 mg/day.  I don't care; I am virtually pain free.  The addiction to alcohol went away the same week I started a gluten free diet.

I created a spreadsheet to track vitamins and minerals in my diet and found a lot that I was simply not eating enough of. Supplementation and diet changes have effectively reversed my malnutrition.

High plasma vitamin D mitigates overactive auto immune genes, although for an unknow reason the mainstream research only looks at greater than or less than 30 ng/ml despite that its effect only seems to kick in above 70 ng/ml. Hives is autoimmune. Poor sleep quality from your pain and hives might cause fatigue.  Your PCP blaming the COVID vaccine does not take into account your mother's story. Doctors like to discredit anecdotal evidence: "Your mother is your mother, and you are you".

I apologize for the ramble, but I understand your frustration.

Please don’t apologize! this was so helpful thank you! I guess I tend to discount my joint pain especially in talking to my PCP as it isn’t that severe and I would say it’s more of a stiffness and uncomfortable than painful. Do you know that feeling of like you need your back to crack? That’s most my joints. But they move fine, apparently too fine, so stiffness might not be a good word either. My TMJs on the other hand, those were actually painful and secondary symptoms (like ear pain) led to daily NSAIDs for a while. What I deal with now I only take NSAIDs VERY rarely (if I get any kind of sharp pain) as I am aware of the poor consequences of long term use of them. 
 

Unfortunately  I tried prednisone months ago. It was ineffective and an increase in dosage landed me in the ER from non stop vomiting. (I unfortunately am quite sensitive to meds. Levoflaxin from my jaw surgery j had a 105 fever and vomiting and was also friends with the ER for a night) However, I am so glad to hear prednisone has been so effective for you. So interesting to see all this information about vitamins—- I actually take none, so maybe I will start there. 

19 minutes ago, Wheatwacked said:

 

Nsaids can cause low neutrophils and I assume you take a lot for your pain. Autoimmune diseases (as evidenced by your hives) can cause high lymphocytes. Solve the hives. Prednisone would help your pains and the hives, but it might be difficult convincing your PCP to give it a trial run. In its defense prednisone is cheap, its effectiveness has been proven for something like 70 years, and sudden death or irreversible kidney and liver damage are not some of its negative side effects, as opposed to most of the expensive, dangerous drugs the pharmaceutical companies have replaced it with.

Had TMJ. Also Plantar Fasciitis. I had joint and muscle pain that would change location from day to day. I self-medicated with alcohol for about 40 years because my complaints were not taken seriously. At its worst in 2012, if I didn't move my head for more than five minutes my neck would lock up and I had to use my hands to move my head. The rest of my joints were also sticky. Could not stand more than 5 minutes and never slept more than 2 hours at a time. Aspirin worked for the pain if I laid still, 800 mg Ibuprofen I could move. Celebrex and other Nsaids were no better. After treatment for gout with oral Prednisone for 10 days I realized that I had been more active and mostly pain free for those 10 days and without the prednisone all the other pains returned. Went on 30 mg/day. Eventually, Thanksgiving 2014 started GFD and was able to reduce the prednisone to the current 5 to 10 mg/day.  I don't care; I am virtually pain free.  The addiction to alcohol went away the same week I started a gluten free diet.

I created a spreadsheet to track vitamins and minerals in my diet and found a lot that I was simply not eating enough of. Supplementation and diet changes have effectively reversed my malnutrition.

High plasma vitamin D mitigates overactive auto immune genes, although for an unknow reason the mainstream research only looks at greater than or less than 30 ng/ml despite that its effect only seems to kick in above 70 ng/ml. Hives is autoimmune. Poor sleep quality from your pain and hives might cause fatigue.  Your PCP blaming the COVID vaccine does not take into account your mother's story. Doctors like to discredit anecdotal evidence: "Your mother is your mother, and you are you".

I apologize for the ramble, but I understand your frustration.

interesting about the iron— that was my own assumption at the time for knowing the absorption interaction between iron and vitamin c. However, my PCP didn’t think anything of it besides asking if I take iron (no) and then referring me to genetic testing. 

[or27]

21 minutes ago, Wheatwacked said:

Your mother is your mother, and you are you".

This one is especially hard. I definitely have some underlying health anxiety related to my moms history, but I also know she’s had a complicated health history all before the age of 55– she’s had a TBI, endometriosis, ovarian cancer, 2 spinal surgeries for degenerative discs/bulging discs, gestational diabetes to eventual type 2 diabetes, and arthritis.. and the chronic hives which I only recently learned of when mine came about. I work in scientific research, so I consider myself to be pretty reasonable, but also look at her history and think between the spine issues and arthritis and endometriosis and hives and T2B she had to have some autoimmune patterns that maybe never connected fully… Then I look at the fact I’m in my mid 20s already with a joint replacement, which took years for drs to take me seriously and do a scan… to find out my joints were worn down 75%.  

[knitty kitty]

I found some articles you might find interesting....

https://www.hormonesmatter.com/fluoroquinolone-time-bomb-mitochondria-damage/

And...

https://www.hormonesmatter.com/tag/fluoroquinolones-thiamine-deficiency/

Seems that Levoflaxin is a fluoroquinolone.  

Sorry about your mom.  All those illnesses your mom has are linked to Vitamin D deficiency.  

Definitely want to get that checked.

[Wheatwacked]

Similarities of my wife and your mother. I am so glad for you that your mom recovered. After several miscarriages my wife Kathy gave birth in 1976 at age 28. Our son was diagnosed with Celiac Disease shortly after weaning. She was diagnosed with endometriosis as the cause of inability to get pregnant again. She had pollen allergies and very allergic to bee stings. At 56 years she was diagnosed with Stage 4B ovarian cancer after several years of abdominal discomfort. Debulking surgery and three rounds of Chemo did not work, and she passed a year after diagnosis on our 33rd anniversary in 2005.

6 hours ago, knitty kitty said:

Seems that Levoflaxin is a fluoroquinolone

I wonder if your response to the prednisone is related to the delayed effect of the Levoflaxin you took?

Your high iron is kind of an outlier. "Normalization from anemic state typically occurs after at least 6 months of GFD, but the process can take up to 2 years for iron stores to replenish."   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8156426/

If I were a medical professional (which I am not) and you asked for my recommendation (you did not), here is what I would recommend to you for the quickest response.  As a long time GFD, malabsorption from Celiac Disease should not be an issue, but other vitamin and mineral deficiencies due to diet are likely, these are like a Quick Start.

500 mg or more Thiamine (B1). WHO recommends 300 mg a day trial period as the diagnostic for deficiency? (thanks,  Knitty Kitty, I am finally not freezing at normal room temp)

250 mcg (10,000 IU) vitamin D3. It took me 6 years at 250 a day to raise my plasma level to 80 ng/ml. The "safe" zone is 30 to 120 ng/ml. Dampens overactive immune response.

For TMI (too much information) here is the link to the nutrient log I keep: http://nutrientlog.doodlesnotes.net/   It isn't current but might give you some ideas. It helped me.

 

Quote

https://www.webmd.com/interaction-checker/default.htm

Don’t use togetherSeriousMonitor closelyMinor

MONITOR CLOSELY

Significant interaction possible (monitoring by your doctor required).

Prednisone + Levofloxacin

Prednisone and Levofloxacin both increase Other mechanism.

Additional Information: Combination may increase risk of tendon rupture.

 

[or27]

13 hours ago, knitty kitty said:

Definitely want to get that checked

I’ll definitely look into vitamin D— something I’ve never considered, thank you so much!

[or27]

6 hours ago, Wheatwacked said:

Similarities of my wife and your mother. I am so glad for you that your mom recovered. After several miscarriages my wife Kathy gave birth in 1976 at age 28. Our son was diagnosed with Celiac Disease shortly after weaning. She was diagnosed with endometriosis as the cause of inability to get pregnant again. She had pollen allergies and very allergic to bee stings. At 56 years she was diagnosed with Stage 4B ovarian cancer after several years of abdominal discomfort. Debulking surgery and three rounds of Chemo did not work, and she passed a year after diagnosis on our 33rd anniversary in 2005.

I wonder if your response to the prednisone is related to the delayed effect of the Levoflaxin you took?

Your high iron is kind of an outlier. "Normalization from anemic state typically occurs after at least 6 months of GFD, but the process can take up to 2 years for iron stores to replenish."   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8156426/

If I were a medical professional (which I am not) and you asked for my recommendation (you did not), here is what I would recommend to you for the quickest response.  As a long time GFD, malabsorption from Celiac Disease should not be an issue, but other vitamin and mineral deficiencies due to diet are likely, these are like a Quick Start.

500 mg or more Thiamine (B1). WHO recommends 300 mg a day trial period as the diagnostic for deficiency? (thanks,  Knitty Kitty, I am finally not freezing at normal room temp)

250 mcg (10,000 IU) vitamin D3. It took me 6 years at 250 a day to raise my plasma level to 80 ng/ml. The "safe" zone is 30 to 120 ng/ml. Dampens overactive immune response.

For TMI (too much information) here is the link to the nutrient log I keep: http://nutrientlog.doodlesnotes.net/   It isn't current but might give you some ideas. It helped me.

 

 

Thank you this is all so helpful. I also appreciate you sending your nutrition log; I’ll look into it!
 

I’m so, so sorry for the passing of your wife and all of her health complications on top of yours. 
 

seems like vitamin D is a clear winner to incorporate and I’ll also investigate vitamin B. Yeah the iron is strange; no one I’ve ever met has “too high of iron” if anything I would also think I’d be on the lower side, I don’t eat a lot of iron-rich foods.