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celiachaver

Pain Developing After Going gluten-free

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In July of 2019, I was diagnosed with celiac disease, confirmed later by TTG and endoscopic results. Immediately, I went completely gluten free. As soon as I did so, I started getting chronic, severe pain during digestion, accompanied by copious gas and 3-4 bms a day. Each time I went to a doctor (and I went to many!), they told me to continue the diet, so I did so. Each day, the pain got worse. I did a CT scan and MRI to see if there could be some other cause of my abdominal pain, but the doctors found nothing. After about 4 months of this hell, I went in to see if perhaps I had that form of celiac which does not improve with the gluten-free diet (I cannot remember the medical term), and it turned out that, on the contrary, both my ttg levels and general intestinal health had improved! It seemed, therefore, that the more my intestines healed, the more excruciating my abdominal pain had become. I tried all sorts of elimination diets and vitamin regimens, and none of them helped at all. I tried dicyclomine and other pills, and they were unhelpful as well. However, per the doctor's orders, I maintained a strict gluten free diet for an entire year. The pain worsened day by day. About a month ago, I decided to introduce gluten into my diet once again. Since doing so, my symptoms have improved drastically. I still have some pain, but much less than before. I have asked every doctor about why this might be happening, and the universal response has been some form of "huh, that's weird." I am wondering if you fellow celiacs might have similar stories or might understand what I'm going through, because I feel very alone sometimes and I don't know whether I should just bear the pain in the service of some distant, imagined outcome, or just trust my senses. After all, a life in unending pain is barely a life worth living and I can't imagine continuing to bear that pain every day. Thanks

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In my 25 years of running this site I've never heard of any celiac who went gluten-free for a year, and had their pain increasing almost daily during that time, then have it go away after eating gluten again. I will say that if you have celiac disease you should definitely not be eating gluten--all science backs the fact that you need to be gluten-free to avoid the wrath that gluten can cause to those with celiac disease...up to and including intestinal lymphoma and a huge host of other autoimmune diseases and issues.

Did they diagnose you with refractory celiac disease (refractory sprue)? If so, this is a very dangerous condition that must be treated by a gluten-free diet, and likely other ways as well:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/ 

AND:

 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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11 minutes ago, Scott Adams said:

In my 25 years of running this site I've never heard of any celiac who went gluten-free for a year, and had their pain increasing almost daily during that time, then have it go away after eating gluten again. I will say that if you have celiac disease you should definitely not be eating gluten--all science backs the fact that you need to be gluten-free to avoid the wrath that gluten can cause to those with celiac disease...up to and including intestinal lymphoma and a huge host of other autoimmune diseases and issues.

Did they diagnose you with refractory celiac disease (refractory sprue)? If so, this is a very dangerous condition that must be treated by a gluten-free diet, and likely other ways as well:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/ 

AND:

 

I am certain that your experience is consistent with the conventional understanding of celiac disease offered by virtually every professional I have approached with this issue. As I mentioned in my post, that conventional understanding has not been helpful in my case, nor has been descriptive of my actual experience. My TTG and endoscopic results after several months ruled out refractory celiac and sprue.

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A shot in the dark here, but when you go gluten-free are you getting enough fiber? Are you replacing the typical wheat products with not so healthy starch-filled gluten-free versions? These things might cause what you described.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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This sounds like gastrointestinal beriberi to me.  I am not a doctor.  I experienced this myself.  I had the same symptoms.

Thiamine deficiency causes gastrointestinal beriberi. 

Read this article.... 

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

"SIBO, IBS, and Constipation: Unrecognized Thiamine Deficiency?"

Thiamine deficiency is overlooked by medical professionals because they are trained to prescribe medications to cover the symptoms without getting to the cause.  They don't recognize gastrointestinal beriberi.  They don't recognize thiamine deficiency outside of Wernicke's in alcoholism.

My doctors (I talked to many, as well) completely missed my thiamine deficiency.  I was miserable for years and my thiamine deficiency worsened to include Wernicke's syndrome.  They wrote me off as hypochondriac.

I have a university degree in Microbiology and had to figure it out myself.  I began taking over the counter thiamine supplements and slowly began to improve.  And magnesium because thiamine needs magnesium to work properly.

Recently I began taking high dose thiamine as Dr. Lonsdale recommends in his book "Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition".  Dr. Lonsdale's articles can be found on www.hormonesmatter.com.

I currently take high dose thiamine regularly in the form of TTFD (tetrahydrofurfuryl disulfide). And feel much better. 

Your symptoms warrant a trip to the doctor and a discussion about thiamine supplementation by IV with doctor supervision in case of a sudden refeeding syndrome reaction. 

Thiamine is not toxic in high levels.  It's easily excreted. 

If I'm mistaken, you won't improve.  If I'm correct, you should see improvements within hours.

I am not a doctor.  I have experienced this.

Discuss with your doctor the possibility that this is gastrointestinal beriberi.  Trying harmless thiamine supplementation will at least rule gastrointestinal beriberi out.

Hope this helps.  Keep us posted on your progress.  

P.S. Gluten makes you feel better because it contains exogenous opioids (yep, just like morphine).  Your body has opioid receptors and can its own opioids.  Morphine works so well because it attaches to your body's opioid receptors.  Gluten can attach to the opioid receptors in the same way, relieving that sense of pain.  Been there, done that, too.  Don't stay long enough to get the t-shirt!  Get to the doctor to rule out thiamine deficiency!

 

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A CT scan and an MRI does not catch everything.  My niece was diagnosed with Crohn’s with a pill camera and after seeing four GIs and had almost every test under the sun, except that pill camera.   As far as your symptoms improving, celiac disease is like a chameleon.  Symptoms ebb and flow.  Long term you could be doing damage by going back on gluten.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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2 hours ago, knitty kitty said:

This sounds like gastrointestinal beriberi to me.  I am not a doctor.  I experienced this myself.  I had the same symptoms.

Thiamine deficiency causes gastrointestinal beriberi. 

Read this article.... 

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

"SIBO, IBS, and Constipation: Unrecognized Thiamine Deficiency?"

Thiamine deficiency is overlooked by medical professionals because they are trained to prescribe medications to cover the symptoms without getting to the cause.  They don't recognize gastrointestinal beriberi.  They don't recognize thiamine deficiency outside of Wernicke's in alcoholism.

My doctors (I talked to many, as well) completely missed my thiamine deficiency.  I was miserable for years and my thiamine deficiency worsened to include Wernicke's syndrome.  They wrote me off as hypochondriac.

I have a university degree in Microbiology and had to figure it out myself.  I began taking over the counter thiamine supplements and slowly began to improve.  And magnesium because thiamine needs magnesium to work properly.

Recently I began taking high dose thiamine as Dr. Lonsdale recommends in his book "Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition".  Dr. Lonsdale's articles can be found on www.hormonesmatter.com.

I currently take high dose thiamine regularly in the form of TTFD (tetrahydrofurfuryl disulfide). And feel much better. 

Your symptoms warrant a trip to the doctor and a discussion about thiamine supplementation by IV with doctor supervision in case of a sudden refeeding syndrome reaction. 

Thiamine is not toxic in high levels.  It's easily excreted. 

If I'm mistaken, you won't improve.  If I'm correct, you should see improvements within hours.

I am not a doctor.  I have experienced this.

Discuss with your doctor the possibility that this is gastrointestinal beriberi.  Trying harmless thiamine supplementation will at least rule gastrointestinal beriberi out.

Hope this helps.  Keep us posted on your progress.  

P.S. Gluten makes you feel better because it contains exogenous opioids (yep, just like morphine).  Your body has opioid receptors and can its own opioids.  Morphine works so well because it attaches to your body's opioid receptors.  Gluten can attach to the opioid receptors in the same way, relieving that sense of pain.  Been there, done that, too.  Don't stay long enough to get the t-shirt!  Get to the doctor to rule out thiamine deficiency!

 

Thank you so much for the information! I will discuss this with my doctor during my next visit. Best wishes!

2 hours ago, cyclinglady said:

A CT scan and an MRI does not catch everything.  My niece was diagnosed with Crohn’s with a pill camera and after seeing four GIs and had almost every test under the sun, except that pill camera.   As far as your symptoms improving, celiac disease is like a chameleon.  Symptoms ebb and flow.  Long term you could be doing damage by going back on gluten.  

Good point! I will see if I can undergo that test. Thank you for the response!

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6 hours ago, celiachaver said:

In July of 2019, I was diagnosed with celiac disease, confirmed later by TTG and endoscopic results. Immediately, I went completely gluten free. As soon as I did so, I started getting chronic, severe pain during digestion, accompanied by copious gas and 3-4 bms a day. Each time I went to a doctor (and I went to many!), they told me to continue the diet, so I did so. Each day, the pain got worse. I did a CT scan and MRI to see if there could be some other cause of my abdominal pain, but the doctors found nothing. After about 4 months of this hell, I went in to see if perhaps I had that form of celiac which does not improve with the gluten-free diet (I cannot remember the medical term), and it turned out that, on the contrary, both my ttg levels and general intestinal health had improved! It seemed, therefore, that the more my intestines healed, the more excruciating my abdominal pain had become. I tried all sorts of elimination diets and vitamin regimens, and none of them helped at all. I tried dicyclomine and other pills, and they were unhelpful as well. However, per the doctor's orders, I maintained a strict gluten free diet for an entire year. The pain worsened day by day. About a month ago, I decided to introduce gluten into my diet once again. Since doing so, my symptoms have improved drastically. I still have some pain, but much less than before. I have asked every doctor about why this might be happening, and the universal response has been some form of "huh, that's weird." I am wondering if you fellow celiacs might have similar stories or might understand what I'm going through, because I feel very alone sometimes and I don't know whether I should just bear the pain in the service of some distant, imagined outcome, or just trust my senses. After all, a life in unending pain is barely a life worth living and I can't imagine continuing to bear that pain every day. Thanks

 

Have a look at this. I know it was a while ago your post but this might help.

https://theceliacmd.com/top-5-reasons-for-persistent-symptoms-after-going-gluten-free/

FODMAP intolerance can create persistent digestive symptoms such as bloating, gas and diarrhea even after gluten is eliminated. This is because many other foods beyond wheat contain FODMAP sugars.

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I had a really great reaction by following knitty kitty's advice and adding extra B5 Thiamine in the form of Benfotiamine. 

I go to a naturopath and have resolved most of my issues from all the years of not being diagnosed with Celiac's, but the asthma was hanging on and getting worse each year.  I turned blue regularly, albuterol inhaler almost hourly, all things the pulmonologist tried gave me severe reactions like super high blood stroke-level pressure, as I cannot tolerate any form of steroids.  The pulmonologist even said we cannot help you any further.  My future was to walk around with an oxygen tank.  Then I found KNITTY KITTY's response to someone else about Thiamine and Sailor's(?) Asthma.

I started with it April 2020, saw slight improvement almost immediately, and now I take my inhaler only once a day, usually after doing my 20 push ups, but now not even after walking or other exercise like I used to.  Earlier this month, we had the big unhealthy smoke in the northwest from the west coast fires, and I was pretty worried it would all come back.  But even when it got to extreme levels, no increase in need for the inhaler.   So big thanks to Knitty Kitty!!!

Here's the one I take, 300mg, 1 capsule 2 times a day:     https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Anyway, you don't mention asthma, but maybe that was my reaction to being low in B5 because that's my weak spot.  And often doctors don't make connections between things that they should. 

I also stay away from processed foods, but when I do take in less fiber, I get some sharp intestinal pains just like my sister describes that has bad diverticulitis and refuses to follow up with doc about possible Celiac's...  The pains resolve by much more water and adding some ground psyllium husk to everything.  But if I make sure I eat mostly or all whole foods, I'm great.

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Beverage, 

Thank you so much for posting about the improvement in your asthma by taking Vitamin B1 Thiamine in the Benfotiamine form! 

I'm so very happy you are experiencing better health!  I'm doing a happy cat dance!

I'm so thankful that my experience with thiamine (Vitamin B1) can be useful to others!

Here's the form of Vitamin B1 Thiamine I take....

https://www.amazon.com/Cardiovascular-Research-Lipothiamine-White-Count/dp/B002GODI7U/ref=sr_1_1?dchild=1&keywords=Lipothiamine&qid=1601532948&sr=8-1

Yes, Sailor's asthma is one historical term used to describe thiamine deficiency.

And this article explains how the term "sailor's asthma" became used....

https://academic.oup.com/nutritionreviews/advance-article/doi/10.1093/nutrit/nuaa004/5835520

Thank you for posting your results, Beverage!

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9 hours ago, knitty kitty said:

And this article explains how the term "sailor's asthma" became used....

https://academic.oup.com/nutritionreviews/advance-article/doi/10.1093/nutrit/nuaa004/5835520

In re-reading this article, it says  "Thiamine deficiency leads to impaired glucose metabolism, decreased delivery of oxygen by red blood cells, ... "   I just had a wow moment.  I also have Thalassemia, which is a genetic anemia where the red blood cells are small and have less hemoglobin, and thus carry less oxygen.  Since taking the thamine,  I have had huge improvement in my energy and it's almost like I don't have thalassemia at all.  My boyfriend has remarked several times that I'm like the energizer bunny!  That's not at all a thing that someone would notice about me, especially at age 64.  Awesome stuff!  And thank you again.

22 hours ago, Beverage said:

I had a really great reaction by following knitty kitty's advice and adding extra B5 Thiamine in the form of Benfotiamine. 

I go to a naturopath and have resolved most of my issues from all the years of not being diagnosed with Celiac's, but the asthma was hanging on and getting worse each year.  I turned blue regularly, albuterol inhaler almost hourly, all things the pulmonologist tried gave me severe reactions like super high blood stroke-level pressure, as I cannot tolerate any form of steroids.  The pulmonologist even said we cannot help you any further.  My future was to walk around with an oxygen tank.  Then I found KNITTY KITTY's response to someone else about Thiamine and Sailor's(?) Asthma.

I started with it April 2020, saw slight improvement almost immediately, and now I take my inhaler only once a day, usually after doing my 20 push ups, but now not even after walking or other exercise like I used to.  Earlier this month, we had the big unhealthy smoke in the northwest from the west coast fires, and I was pretty worried it would all come back.  But even when it got to extreme levels, no increase in need for the inhaler.   So big thanks to Knitty Kitty!!!

Here's the one I take, 300mg, 1 capsule 2 times a day:     https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Anyway, you don't mention asthma, but maybe that was my reaction to being low in B5 because that's my weak spot.  And often doctors don't make connections between things that they should. 

I also stay away from processed foods, but when I do take in less fiber, I get some sharp intestinal pains just like my sister describes that has bad diverticulitis and refuses to follow up with doc about possible Celiac's...  The pains resolve by much more water and adding some ground psyllium husk to everything.  But if I make sure I eat mostly or all whole foods, I'm great.

I don't know why I typed B5 2 times in here, I meant B1 thamine...  Whicht B vitamin can fix that? lol

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Beverage,

I had donated blood during the time I was suffering from progressively worsening thiamine and other vitamin deficiencies caused by undiagnosed Celiac Disease.  The nurse that checked my blood before the donation remarked that it looked like I had thalassemia (small immature red blood cells).  She allowed me to donate blood anyway.  Afterwards, I had no energy at all.  I had never felt so bad after donating previously.  I told this to my doctor who refused to check with a simple blood test because my prior blood tests had been normal.  This doctor dismissed what he didn't understand.

Thiamine is required for hematopoiesis (making red blood cells) along with Riboflavin and Folate...and Niacin and Pyridoxine (B6) and B12 (Cobalamine).  The B vitamins all work together.  Some need Vitamin C to work properly.  Since they are all water soluble the whole collection of B vitamins and Vitamin C may not be properly absorbed in Celiac Disease.  Taking high dose Thiamine (>300 mg/day) along with a B100 Complex (containing about 100 mg of each of the eight B vitamins) will ensure all the B vitamins are available.  Adding Vitamin C and magnesium will help the B's work together.  Thiamine, Vitamin C and magnesium are being used to help Covid patients recover in hospitals.

About the typo.....😸 yes, there is a vitamin for that.  Thiamine in the form of thiamine tetrahydrofurfuryl disulfide (TTFD).  It's a form of thiamine (Lipothiamine) that easily crosses the blood brain barrier so your brain cells can function better.   (It's recommended for professional athletes.  It's being used in dementia and Parkinson's patients, too.) Before I started taking TTFD, I felt foggy and slow.  But after switching to lipothiamine, my memory has improved, I have more energy, and my mood has improved.  The Lipothiamine I take.....

https://www.amazon.com/Cardiovascular-Research-Lipothiamine-White-Count/dp/B002GODI7U

Dr. Lonsdale explains how lipothiamine aka TTFD works by crossing the blood brain barrier....

https://www.hormonesmatter.com/ttfd-thiamine-derivative/

And here's a neat link.....watch the embedded niacin video! .......

https://med.libretexts.org/Courses/Sierra_College/Sierra%3A_NUTF10_(Teh)/12%3A_Nutrients_Important_for_Metabolism_and_Blood_Function/12.04%3A_Vitamins_Important_for_Metabolism_and_for_Blood_Function_and_Renewal

Hope this helps!

Thanks again, Beverage!  I appreciate you becoming a Celiac Guinea Pig and giving thiamine a try!

 

1 hour ago, Beverage said:

In re-reading this article, it says  "Thiamine deficiency leads to impaired glucose metabolism, decreased delivery of oxygen by red blood cells, ... "   I just had a wow moment.  I also have Thalassemia, which is a genetic anemia where the red blood cells are small and have less hemoglobin, and thus carry less oxygen.  Since taking the thamine,  I have had huge improvement in my energy and it's almost like I don't have thalassemia at all.  My boyfriend has remarked several times that I'm like the energizer bunny!  That's not at all a thing that someone would notice about me, especially at age 64.  Awesome stuff!  And thank you again.

I don't know why I typed B5 2 times in here, I meant B1 thamine...  Whicht B vitamin can fix that? lol

 

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@knitty kitty

I am diagnosed with Thalassemia.  Besides all the bloodwork, you can have a genetic test.  This is critical information to know.  The Thalassemia trait can be passed on to your children.  Screening should be done prior to having children.  A severe version (traits from both parents) can cause death or life long blood transfusions for  infants.  

I am not aware that anything can be done to improve Thalassemia symptoms other than blood transfusions.  I do know that I am less likely to get Malaria!  Researchers think this is the reason Thalassemia evolved  in the Mediterranean and Southern Asia regions where Malaria has historically been a huge problem.  
 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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Wow, I am just hearing about this and did not know that this was a problem people have. I know that with Celiac Disease you can be deficient in B vitamins and I know started taking them again because I was getting soar muscles in my neck and shoulder. I want to see if it makes a difference. I am glad I found this site.

Thank you for all who contribute information.

Sharon.

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10 hours ago, cyclinglady said:

@knitty kitty

I am diagnosed with Thalassemia.  Besides all the bloodwork, you can have a genetic test.  This is critical information to know.  The Thalassemia trait can be passed on to your children.  Screening should be done prior to having children.  A severe version (traits from both parents) can cause death or life long blood transfusions for  infants.  

I am not aware that anything can be done to improve Thalassemia symptoms other than blood transfusions.  I do know that I am less likely to get Malaria!  Researchers think this is the reason Thalassemia evolved  in the Mediterranean and Southern Asia regions where Malaria has historically been a huge problem.  
 

Good to know, Cycling Lady!  

I believe what I had was due to thiamine deficiency (and probably increasing deficiencies in other vitamins needed to make red blood cells like  pyridoxine (B6), niacin (B3), folate(B9), cobalamine (B12) and riboflavin (B2) deficiencies as well.)

Iron deficiency can cause microcytic (small sized) red blood cells, but they are usually hypochromic (pale in color because there's not enough iron to give it that red color) and there's a lower total number of red blood cells (low blood cell count=anemia).  Thalassemia is usually microcytic and hypochromic because of the problem with heme production but can have either a low count or a high red blood cell count.

If my blood was hypochromic as well as microcytic with a low blood cell count,  I would not have been allowed to donate blood. 

 I was told my blood cells were microcytic, normochromic (red enough so plenty of iron and heme), but I had a higher than normal red blood cell count.  That means I was making lots of little tiny immature red blood cells to carry more oxygen and that points to thiamine deficiency.  

I was making lots of little red blood cells because oxygen wasn't being utilized properly.  The body uses oxygen to help make energy (ATP), but thiamine is also required.  My body was making more red blood cells to carry more oxygen. But I couldn't make enough energy (ATP) even with more oxygen because I was thiamine deficient.   

It's in one of my university textbooks at the back of my closet....

Same thing happens to athletes who train at high altitudes (Colorado Springs' Olympic Training Center for example).  They need more oxygen at high altitudes where the air is thinner.  So their bodies make a whole bunch of new red blood cells.  When they come down off the mountains, they have a higher capacity to carry oxygen because of this extra blood production.  But they have adequate thiamine and normocytic normochromic red blood cells.

And without enough thiamine.....

"Lack of adequate thiamine results in the failure of pyruvate to enter the Krebs Cycle, thus preventing aerobic metabolism. The resulting decrease in aerobic metabolism and increase in anaerobic metabolism leads to decreased oxygen consumption by the tissues and increased lactic acid production. "

Effect of Thiamine on Oxygen Utilization (VO2) in Critical Illness (VO2)

https://clinicaltrials.gov/ct2/show/NCT01462279

.....which is why doctors are using thiamine to treat Covid patients.

Simpler explanation....thiamine is like a spark plug needed to produce energy....

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

I've not had another blood test  result like that since I corrected my thiamine deficiency.  

I am continually amazed at how the body tries to compensate when things go wrong and how quickly the body can heal itself given the proper building blocks and fuel.  

Apologies for going down that rabbit hole. 

😸

 

 

Edited by knitty kitty
Typo correction

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