Long and Winding Road (or intestine, lol) to wholeness...and a "Hi, I'm New!" post.

[AmericanaMama]

Greetings from behind (or in front of?) my computer, in the state of Michigan and confusion😀...long rant, I'm sorry ahead of time....

I've been on a journey to some kind of "normal" since last April. I guess you'd say I'm a bit of an indirect "collateral" damage of Covid. I did too much on a nice spring (rarity) day last April and had back spasms. Once that resolved (about two days or so) the electric shock-like pain started all over at different points on my body (trunk, eyes, neck, face, legs, arms-you name it), that calmed down and then it was pins and needles, numbness, and a feeling of "socks are too tight" from the knee down. Over six months, it began to calm down a bit (but would rear it's head in the strangest places like around my eyes and mouth and patches on my arm that felt like "friction burn") and physical therapy helped some (and time, I suppose). The sensory stuff waxed and waned.

By July-August I could see proper specialists as covid limitations had lifted. I saw a neurosurgeon (my pcp thought I'd need 'pain management' which aggravates me, I was not so much in pain as uncomfortable and worried I wasn't getting to the bottom of this) that read my MRI and says: you have degenerative changes, but are you in major pain? I could do surgery, but...it sounds "systemic" to me. Any lead, arsenic, tick exposure? Any major virus recently? Are you anemic? I see where there's bone marrow changes, more fatty.

From there it was to a neurologist that sent me to have an EMG (no peripheral nerve involvement, but 'posterior rami nerve irritation, no root involvement). Neuro says more MRI's needed  because you have Sjogren's you could have transverse myelitis or MS. Results were MRI spinal signal looked good in brain and all along the spinal cord. She says "it looks like you have some back problems but the polyneuropathy, we can treat with rx". I was told small fiber neuropathy is a thing with Sjogren's folks as well, but the treatment is the same as large peripheral neuropathy, either with anti-seizure or anti-depressants. Ok, but is this really what is going on? We'll see. Try the antidepressant. Sighs.

Are you still reading? God bless...meanwhile, it was summertime in Michigan and I was walking lovely trails near me upwards five miles a day and feeling pretty good, hopeful. Until...November. The electric shocks started in my ankle, inside of the knee, and groin. Honestly, these are what I'd imagine being tased is like. It would be followed by deep pain and numbness from knee down (not to where you can't feel to walk, but pins and needles). Along with this was joint pain and muscle stiffness that I hadn't really had earlier in the year.This went on until early March of this year.

I had success with one round of prednisone, but the second go did nothing. On a whim, I reached out to my rheumatologist (after pcp suggested pain management again, what the frig?) whom I hadn't seen in a couple of years. God bless him. He did a complete exam and asked me some questions I thought 'huh?' He asked if I did much in the way of drugs as a teen (no), tats (no). When he ran down the list "anyone in your family with celiac disease?" Not that I am aware of (?). He had an assistant come in to do blood work and I felt like he was throwing spaghetti on the wall to see what stuck. Blood work came back later and the negatives were no covid antibodies, no Hep C. He called me to say "I think you have celiac neuropathy. Your test came back positive (celiac panel).Later in the month I had the EMA and it was positive. Just had the endoscopy/biopsy and the bit I can read on the patient portal reads like it's negative, unless I have something wrong. Is this a thing? You can have blood work positive and biopsy neg, and similarly the other way around? Does having another autoimmune disease sort of "color" the picture and skew it in a "false positive" way in terms of antibodies? Can the very presence of another disease spike the celiac antibodies falsely? Can the biopsy be negative in the small intestine but sort of be "extra-intestinal" like with the weird neuropathy?

Here are my numbers:

(first test) Tissue Transglutaminase, IgA    72.5 units/mL  (their standard range is <20.0 units/mL)    Immunoglobulin A (IgA) 212 mg/dL (their standard 70-365mg/dL)

(second test, a couple weeks later) TTG was 68.8     

Endomysial Antibody, IgA   1:40 titer     (their standard range of <1:5 titer)

Questions- have any of you had joint pain, stiffness, neuropathic pain? Anemia, osteoporosis, gas/bloating, and constipation? (sorry for the TMI) Anyone also have an autoimmune/rheumatic disease i.e, Sjogren's Syndrome?

Thank you for your time and patience. I'm really trying to learn and be my own best advocate. If I am wasting time with celiac I want to move on to the next thing which is getting a skin biopsy for small fiber neuropathy.

Peace,

Robin aka "AmericanMama'

 

 

 

Reference Range:

[Scott Adams]

Yes, you can have a positive blood test, which is true for both of the TTG blood tests you had, which are very specific for celiac disease, AND a negative biopsy, so I would definitely consider yourself celiac, and start on a gluten-free diet (did your doctor recommend this yet?).

 Also, gluten neuropathy and nerve damage is definitely common in celiacs, and here are some articles we've done on this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

[CMCM]

Welcome, you have arrived at a great place to read and ask questions!

What a trip you have been on with your health.....a story that will not be surprising to many of us around here.  Getting a diagnosis of celiac disease or even gluten sensitivity as a cause behind so many of the symptoms you describe is said to still take an average of 11 years.  This is not to say your issues are definitely caused by untreated celiac disease....but it's a good possibility to consider.  It's great that your doctor has already done a celiac panel and found it positive and also encouraging that your doctor knows enough about celiac disease to suggest your neuropathy could be related to celiac.

You asked:  Have any of you had joint pain, stiffness, neuropathic pain? Anemia, osteoporosis, gas/bloating, and constipation? (sorry for the TMI) Anyone also have an autoimmune/rheumatic disease i.e, Sjogren's Syndrome? 

Speaking for myself, along with a bunch of other symptoms, I am one who has neuropathy in my feet  (this has been going on for at least a decade, but it got increasingly worse in the past year when I was eating gluten a lot).  Also yes to joint pain  (hands in particular), osteopenia (precursor to osteoporosis), yes to gas/bloating, yes to constipation, yes to a bunch of things you didn't mention! 

In early January I implemented a careful, limited diet because I already know I react to dairy and corn, as well as gluten.  I was scared by what happened to me, and I got very serious with my diet.  I stopped eating all grains, all dairy, all gluten, all sugar (yes, you can be sensitive to sugar!).  Bit by bit over the 3 months since then, I have felt increasingly better.  Gone is gas/bloating/diarrhea alternating with constipation, joint pain about 80% better at this point, the stabbling pains down my leg are gone, and neuropathy is perhaps 50% better at this point.  I take prescription level B vitamins and other OTC vitamins for the neuropathy, which is said to be exacerbated by a deficiency of certain B vitamins.  So overall, my diet and perhaps the vitamins too are making a difference.  Some people have said it can take up to a year or two for things to heal, especially healing for nerves that are damaged, so this is not an instant thing and you should not expect to be better in a few weeks.  You have to revamp your diet and keep it that way, and I do believe that can make a huge difference over a period of time which can be different for each one of us.  For me, 3 months into my current diet, I feel so incredibly better finally, even though I realize the neuropathy symptoms may take up to a year or more to get better.  I also realize that the damage done to the nerves may never resolve completely, but at least, it will be better.  I'm not going to take meds for it, that's for sure. 

It's amazing the damage that eating certain foods can do to the body, and it's amazing what removing those foods from the diet can do to heal the body.

[AmericanaMama]

8 minutes ago, Scott Adams said:

Yes, you can have a positive blood test, which is true for both of the TTG blood tests you had, which are very specific for celiac disease, AND a negative biopsy, so I would definitely consider yourself celiac, and start on a gluten-free diet (did your doctor recommend this yet?).

 Also, gluten neuropathy and nerve damage is definitely common in celiacs, and here are some articles we've done on this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

 

9 minutes ago, Scott Adams said:

Thank you, Scott. This is all a journey and I appreciate your feedback and the article. I will read and appreciate.

 

[AmericanaMama]

8 minutes ago, CMCM said:

Welcome, you have arrived at a great place to read and ask questions!

What a trip you have been on with your health.....a story that will not be surprising to many of us around here.  Getting a diagnosis of celiac disease or even gluten sensitivity as a cause behind so many of the symptoms you describe is said to still take an average of 11 years.  This is not to say your issues are definitely caused by untreated celiac disease....but it's a good possibility to consider.  It's great that your doctor has already done a celiac panel and found it positive and also encouraging that your doctor knows enough about celiac disease to suggest your neuropathy could be related to celiac.

You asked:  Have any of you had joint pain, stiffness, neuropathic pain? Anemia, osteoporosis, gas/bloating, and constipation? (sorry for the TMI) Anyone also have an autoimmune/rheumatic disease i.e, Sjogren's Syndrome? 

Speaking for myself, along with a bunch of other symptoms, I am one who has neuropathy in my feet  (this has been going on for at least a decade, but it got increasingly worse in the past year when I was eating gluten a lot).  Also yes to joint pain  (hands in particular), osteopenia (precursor to osteoporosis), yes to gas/bloating, yes to constipation, yes to a bunch of things you didn't mention! 

In early January I implemented a careful, limited diet because I already know I react to dairy and corn, as well as gluten.  I was scared by what happened to me, and I got very serious with my diet.  I stopped eating all grains, all dairy, all gluten, all sugar (yes, you can be sensitive to sugar!).  Bit by bit over the 3 months since then, I have felt increasingly better.  Gone is gas/bloating/diarrhea alternating with constipation, joint pain about 80% better at this point, the stabbling pains down my leg are gone, and neuropathy is perhaps 50% better at this point.  I take prescription level B vitamins and other OTC vitamins for the neuropathy, which is said to be exacerbated by a deficiency of certain B vitamins.  So overall, my diet and perhaps the vitamins too are making a difference.  Some people have said it can take up to a year or two for things to heal, especially healing for nerves that are damaged, so this is not an instant thing and you should not expect to be better in a few weeks.  You have to revamp your diet and keep it that way, and I do believe that can make a huge difference over a period of time which can be different for each one of us.  For me, 3 months into my current diet, I feel so incredibly better finally, even though I realize the neuropathy symptoms may take up to a year or more to get better.  I also realize that the damage done to the nerves may never resolve completely, but at least, it will be better.  I'm not going to take meds for it, that's for sure. 

It's amazing the damage that eating certain foods can do to the body, and it's amazing what removing those foods from the diet can do to heal the body.

Mercy...eleven years. I think a little over a year is a problem? Lord. It sounds like diet has been the key to you feeling relief. I am definitely exploring a bunch of things. I haven't went off gluten yet because I don't know if the doc will end up doing other test that require a gluten challenge. Digression of sorts, I was dx'd about twelve years ago with Sjogren's. At that time I had super mild sensory stuff (pins and needles in the feet). It stopped after about six months. When I was a kid, I was hospitalized for about a week and nearly had my appendix removed because I had such a bad infection that set up behind the darn thing. These are things that make one curious years later. I only remember having x-rays as this was the mid-70's. Not sure they even did endoscopy on kids then. I don't remember having that. Weird. Things you remember that could be useful to a dx. Or not. Thank you kindly for your input. Blessings.

[knitty kitty]

@AmericanaMama

Please get checked for vitamin deficiencies!  

Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies which can cause peripheral neuropathy.

I became very deficient in vitamins before a Celiac diagnosis.  I had the peripheral neuropathy up into my thighs, arms, and face.  

I also have Sjogren's.  Thiamine is instrumental in glands and their secretions.  Once I corrected my vitamin and mineral deficiencies and started high dose thiamine (>500 mg/day), my health improved dramatically.  My Sjogren's symptoms have improved.  My eyes are rarely dry now.

Thiamine, niacin, pyridoxine (B6), and B12 are important to nerve health and function.

"Questions- have any of you had joint pain, stiffness, neuropathic pain? Anemia, osteoporosis, gas/bloating, and constipation? (sorry for the TMI) Anyone also have an autoimmune/rheumatic disease i.e, Sjogren's Syndrome?"

Vitamin and mineral deficiencies due to malabsorption caused by Celiac Disease can cause all these symptoms you asked about.

Doctors are trained to prescribe pharmaceuticals and medical procedures.  They frequently overlook the devastation caused by vitamin deficiencies.  Doctors do not recognize vitamin deficiencies anymore. My doctors' ignorance about nutritional deficiencies nearly killed me.

Please consult your physician about trying high dose thiamine and vitamin supplementation.  

 

 

[knitty kitty]

Forgot to post this...

"Nutritional Neuropathies"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

 

Please read.

 

[GFinDC]

Sjogren's Disease is one of the conditions associated with celiac disease.  you have a higher chance of having/getting one of the associated conditions than non-celiacs.

https://www.beyondceliac.org/celiac-disease/related-conditions/

There are some celiac people who get gluten ataxia symptoms instead of GI symptoms.  The antibodies can attack nerves and brain cells.

[Posterboy]

On 4/16/2021 at 1:25 PM, CMCM said:

I take prescription level B vitamins and other OTC vitamins for the neuropathy, which is said to be exacerbated by a deficiency of certain B vitamins.  So overall, my diet and perhaps the vitamins too are making a difference.

 

On 4/16/2021 at 12:50 PM, AmericanaMama said:

She says "it looks like you have some back problems but the polyneuropathy, we can treat with rx". I was told small fiber neuropathy is a thing with Sjogren's folks as well, but the treatment is the same as large peripheral neuropathy, either with anti-seizure or anti-depressants. Ok, but is this really what is going on? We'll see. Try the antidepressant. Sighs.

American Mama,

Imitation is the sincerest form of flattery  unless it is medical imitation (mimicry) then it is the unkindest cut??? because being misdiagnosed by a disease that mimics another delays your healing.

This  happens a lot...sadly.

IF you have being diagnosed with Sjorgen's already they might of misdiagnosed Pellagra mimicking LUPUS.

Here is a nice article on it...

Entitled "Pellagra in a patient with primary Sjogren's syndrome"

http://www.academia.edu/24915500/Pellagra_in_a_patient_with_primary_Sjogrens_syndrome 

I wrote a Posterboy blog post about how Pellagra can mimic LUPUS and be misdiagnosed the one for the other.

Entitled  "The LUPUS Inflammation Model for Sickness Beginning with B-Vitamin Deficiencies in Celiac's and other Inflammation triggered diseases"

Maybe it will help you to read it.

 

As for the Neuropathy try taking some Benfotiamine (a fat soluble B-1) with Magnesium Citrate (always) with Meals.

The Diabetic Neuropathy people suffer from has been shown to be from a Thiamine deficiency that develops as part of their diabetes.

I know....I had the same Diabetic Neuropathy reversed by Benfotiamine supplementation.....of course the Doctor's don't have a clue how I did it....because they don't study Vitamins.....(and in the doctors' defense) I didn't know until later what helped me ..... until I took it (Benfotaimine a Fat Soluble B-1) for Creatine in my kidneys ( considered a complication from high blood sugar) but it really was  a thiamine deficiency) going undiagnosed/misdiagnosed (Mimicking) Neuropathy that got better too! and why medical mimicry (misgidiagnosed is the unkindest cut.... because you never get those years back)....but you can go forward from here!

Here is the research on it...

Entitled "Thiamine Deficiency and Diabetic Polyneuropathy"

https://www.naturalmedicinejournal.com/journal/2018-11/thiamine-deficiency-and-diabetic-polyneuropathy

quoting there summary read it all when you get a chance...

"Other complications of diabetes attributed to increased flux through these 4 signaling pathways, such as retinopathy, microvascular disease, and nephropathy, have also been shown to improve when treated with either benfotiamine or thiamine.73,77,82-89 Additionally, diabetes mellitus is a clinical component of thiamine-responsive megaloblastic anemia syndrome, a disease characterized by cellular thiamine processing defects.90 Peripheral nerve dysfunction in the presence of thiamine deficiency is consistent with evidence that abnormal thiamine-dependent processing is related to the central neuronal dysfunction observed in Alzheimer’s disease.91,92

The preponderance of evidence would indicate that diabetics have an increased need for thiamine while at the same time being endemically deficient in it. Perhaps Porta et al stated it best:

Diabetes might be considered a thiamine-deficient state, if not in absolute terms at least relative to the increased requirements deriving from accelerated and amplified glucose metabolism in non-insulin dependent tissues that, like the vessel wall, are prone to complications.21

When taken as a whole, the evidence suggests a significant interrelationship between thiamine deficiency and diabetic polyneuropathy."

Here is another Posterboy blog post that might help you.

Good luck on your continued journey!

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,