Microscopic Lymphocytic Colitis

[Teresa Dean]

Does anyone have Celiac Disease with MLC also or MLC with Celiac Disease.  I have microscopic lymphocytic colitis…. Just this month after a LONG hard time of (for me and I know many others) unbelievable 24/7 symptoms of unbelievable diarrhea plus homebound I was finally diagnosed after 5 months of waiting and basically living on water, clear broth, rice and applesauce….with zero appetite along with thinking, looking, smelling and eating the best I could of these few things and weight was dropping fast and appointments were no rush (just hurry up & wait)….. so I waited. Initial appointment of Q & A and sent home with 6 bottles for stool samples and a colonoscopy scheduled for December 14, 2022 (the initial appointment was October 26, 2022). To get stool sample results was to call every day until Monday before Thanksgiving 2022 with the same response….. they were not able to give me the results because my GI had not signed off.  MY RESULTS….!!! I only hung up and I called right back but this time I asked for the office manager, transferred, no name asked or any questions.  The office manager answered maybe after only 2 rings. Tammy …. A real person that pulled up my patient information and gave me my results that no one else would.  All samples were negative for test ordered. I told Tammy I was desperate and I didn’t think it was going to be possible that I wait until December 14 for the colonoscopy. She said, I have a cancellation Wednesday (day before Thanksgiving)….. I said I’ll be there!!!  Finally the colonoscopy revealed Microscopic Lymphocytic Colitis.  I knew nothing of any kind of colitis but I had heard the word.  Yet ulcerative colitis and Crohns are the IBDs advertised on TV now ….. and both are (rightly so) well known because of cancer risk.  MLC and it’s partner  Microscopic Collagenous Colits are not known to cause cancer. But diarrhea can be more severe. It certainly was for me!!! Yet thankful to know it’s not known to cause cancer….. Nor are there any definitive causes for MC, only possible things that might cause it.  No one diet fits all so a few possible foods are a possible issue.  45 pounds less of me after 4 months and still loosing when diagnosed in December 2022, FINALLY!!!! The routine treatment was prescribed Budesonide and Cholestyromine powder packets for Bile Acid Malabsorption (BAM). Improvement was slow. But I slowly continued to be better. Finally July 2023 I was in remission…. November 2023 remission still continues (an occasional day of bathroom urgency). I weaned from Budesonide by May 2023. No GI follow ups were scheduled after May.  I eat with extreme caution…… weight is steady at 45 pounds less (120) fortunately I had gained a good 10 pounds before this condition hit out of the blue…… Just last month my nephew was (after 29 years) diagnosed with Celiac Disease.  I’m my research or MC I had read of Celiac Disease but it was never mentioned or tested for that I was told or have read in my notes. Yet. hearing of Celiac while doing my homework on MLC I C looked up Celiac again.   The main reason was that my nephew had as a boy and at his GP check up….. discovered he has Celiac Disease!!! I looked it up and now I wonder. Could I have Celiac and MLC orMLC and Celiac???? No one has said or tested for Celiac so after reading about it, I began to wonder…… 

Does anyone here have both, MLC  and Celiac?  What ‘flagged’ my nephews doctor was his skin. Face and  upper arms are red and have been for some time……symptoms but he was also tested for Celliac disease. Both a few skin issues and  such are symptoms and common with both.
I’d m like to be tested just so I know. Should  I be tested for Cdliac? MLC  is underrated  in severity.  I’ve  seen..,that was the  issue for my nephew (Celiac!?) is testing for Celiac advisable since I have MLC? Or is MLC is NO LONGER known to have a connection to MLC? 
 

[trents]

Welcome to the forum, Teresa!

What I can tell you is that the celiac population has a higher statistical chance to develop other intestinal diseases. I certainly think it would be wise to get tested for celiac disease. But for the testing to be valid you need to have been eating regular amounts of wheat for 6-8 weeks (for he blood antibody tests) and two weeks for the endoscopy/biopsy. I mention that because it sounds like you have been on a very restricted diet of late.

[knitty kitty]

@Teresa Dean,

Ask for a genetic test to see if you have any of the known genes for Celiac Disease.  Sounds like doing a gluten challenge could set back the progress you've made so far.  

Get checked for nutritional deficiencies!  

[Wheatwacked]

8 hours ago, Teresa Dean said:

may also be used to treat itching in people with too much bile acid caused by a certain type of liver/bile duct disease (partial biliary obstruction) packets for Bile Acid Malabsorption

This could be a misdiagnosis of Choline Deficiency. primary source is eggs, beef and liver.   Diahrrea will cause Potassium depletion.  Virtually everyone who is sick has low vitamin D.  NHANES study, vitamin C deficiency or depletion existed in 32% of women ages 25–44 in the US.
 

As knitty kitty said, it looks like a gluten challenge would do more harm at this point than good.  Are you consuming gluten now?  BRAT diet perhaps?

It seems your quickest solution would be gluten free diet and replenishing your vitamin and mineral deficiencies.  For me the ones that had the most benefit is 10,000 IU vitamin D3, 840 mg (up to 3500 mg) phosphatidyl Choline, 500 mg Thiamin, Iodine will accelerate your healing.  I eat 13 grams of dryed kelp several times a week. Or there is Lugol's Solution.

These are not "supplemental".  They are essential nutrients you should be eating, but if not we are lucky to have them in concentrated pill form.

Your doctor is unlikely to suggest them.  A goodly number of people, including doctors, believe that vitamins are quackery and following a gluten free diet is a psychologic problem.  It is not in your head.

8 hours ago, Teresa Dean said:

Just last month my nephew was (after 29 years) diagnosed with Celiac Disease.

Latest research is indicating that 40% of first degree relatives of a Celiac Disease patient has undiagnosed Celiac.  40% of the population has at least one gene for Celiac.

[Teresa Dean]

9 hours ago, trents said:

Welcome to the forum, Teresa!

What I can tell you is that the celiac population has a higher statistical chance to develop other intestinal diseases. I certainly think it would be wise to get tested for celiac disease. But for the testing to be valid you need to have been eating regular amounts of wheat for 6-8 weeks (for he blood antibody tests) and two weeks for the endoscopy/biopsy. I mention that because it sounds like you have been on a very restricted diet of late.

Thanks for the info!!!!!  Yes my diet is very restricted for over a year now.  Some things I KNOW I can’t eat and I don’t!!!!!! Some things I’m afraid to try again. Much just doesn’t appeal……  

oh mercy I’d sure hate to add foods that might cause a gut flare up!!!!! I will consider after the holidays.  I do not want to be racing to the bathroom all the holiday season…… Great information!!!!

 Thank you sooooo much 

Teresa 

[Teresa Dean]

8 hours ago, knitty kitty said:

@Teresa Dean,

Ask for a genetic test to see if you have any of the known genes for Celiac Disease.  Sounds like doing a gluten challenge could set back the progress you've made so far.  

Get checked for nutritional deficiencies!  

THANK YOU!!!!!! Yes if a genetic test can be done I’d prefer that…… I certainly DO NOT want to cause a flare up if eating gluten can cause issues……..plus I no way need to loose any more weight.  I have very little - none left to loose at age 65………

[trents]

@Teresa Dean, we want you to understand that genetic testing for celiac potential is just that. It can only establish the potential for celiac disease. About 40% of the population has one or more celiac genes but only about 1% of the population actually develops celiac disease. So, genetic testing serves the purpose of a rule out.

Edited November 9, 2023 by trents

[Teresa Dean]

2 hours ago, Wheatwacked said:

This could be a misdiagnosis of Choline Deficiency. primary source is eggs, beef and liver.   Diahrrea will cause Potassium depletion.  Virtually everyone who is sick has low vitamin D.  NHANES study, vitamin C deficiency or depletion existed in 32% of women ages 25–44 in the US.
 

As knitty kitty said, it looks like a gluten challenge would do more harm at this point than good.  Are you consuming gluten now?  BRAT diet perhaps?

It seems your quickest solution would be gluten free diet and replenishing your vitamin and mineral deficiencies.  For me the ones that had the most benefit is 10,000 IU vitamin D3, 840 mg (up to 3500 mg) phosphatidyl Choline, 500 mg Thiamin, Iodine will accelerate your healing.  I eat 13 grams of dryed kelp several times a week. Or there is Lugol's Solution.

These are not "supplemental".  They are essential nutrients you should be eating, but if not we are lucky to have them in concentrated pill form.

Your doctor is unlikely to suggest them.  A goodly number of people, including doctors, believe that vitamins are quackery and following a gluten free diet is a psychologic problem.  It is not in your head.

Latest research is indicating that 40% of first degree relatives of a Celiac Disease patient has undiagnosed Celiac.  40% of the population has at least one gene for Celiac.

 

Oh the microscopic colitis is not a misdiagnosis…. It is accurate…. But some of the articles I have read about Celiac Disease since my nephew was diagnosed at age 28 (about a month ago) yet he had been to Drs, dermatologist all his life and was treated for rosacea, acne and other conditions all those years. And his new primary care physician noticed the red rash on the backs and fronts of his upper arms…. Other areas too.  I was very impressed that she told him (he didn’t even ask) but she asked him about the rash (red, rough and little bumps to blisters)…… she said to him she wanted to test him for celiac disease…….. the test came back absolutely positive!!!!! He is of course gone gluten free…..since this showed up in him and some articles imply that celiac disease can cause MLC or MLC can cause celiac disease.  I feel I may have celiac and MLC.  My GI did not test for celiac.  
The MLC symptoms hit suddenly in August 2022.  It got bad be for me FAST!!! But no matter I had to wait, no available appointments…… Totally life changing!!!!!! My skin is a weird mess!!!!! 
That is the main reason I feel I need to be tested for celiac disease…….. Nothing helps.  I’ve tried everything.  Dermatologist I will see December 6. So thankful for the improved to remission (99% of the time so far) with the treatment available for Microscopic Colitis.   If testing for celiac disease is positive then I’ll never know which was first.  But some thing remains a major issue …..my skin….. so now what I know about MC and have learned about celiac disease and some people can have or develop celiac disease if they have microscopic colitis……. I would like to know if I’m positive for Celiac disease. 
To help my skin improve is a priority.  My areas are painful, no itching but pain and to feel alligator 🐊 skin and to see the redness and even sore like places I feel I need to know and be able to get an appropriate treatment to help my skin. 
No otc cortisone cream or ointment comes even close to helping.  The list of otc skin treatments are worthless and no ‘miracle creams’ with huge price tags even begin to help, Vaseline, mineral oil ….. I’ve tried EVERYTHING!  
So it seems to me (even though he’s my nephew) it could be possible I have celiac disease too as well as Microscopic L Colitis……????  

 

 

 

[Teresa Dean]

1 hour ago, trents said:

@Teresa Dean, we want you to understand that genetic testing for celiac potential is just that. It can only establish the potential for celiac disease. About 40% of the population has one or more celiac genes but only about 1% of the population actually develops celiac disease. So, genetic testing serves the purpose of a rule out.

Yes, that is my objective to rule out…….the fact that my nephew is now positive for celiac disease and I have learned MLC and Celiac Disease can both occur in a person. The fact that my skin is like a different persons skin (a major awful, that so far NOTHING has helped) I just hope to figure out IF I might have the genetic factor that might indicate Celiac Disease. I go to  my dermatologist December 6….. in the spring my husband went to our dermatologist and told him if my skin issues…… he said….. it’s likely the medication and to continue using cortisone cream. 1. The budesonide to treat the colitis didn’t cause my skin problems (I had weaned off for a month plus at that point) 2.  Microscopic Colitis is VERY UNDERRATED as it seems and little study is done for it.  
3. Apparently many go quickly into remission…… I was a year to be in remission. 
4.  To know if I have or have the genetic factor for celiac would help me to know and hopefully treat or go gluten free ti help my skin.

  It’s harder it seems by the day (it seem) that a day or night of sleep I have new places to appear and none of the rest ever truly heal.  They hurt and the patches on my face that I was so thankful for many months no places were on my face…… they are now……. And to disguise 🥸 with make up is a long process to go anywhere.  It’s become so normal to stay home 🏡 I only go when I have to🤷🏼‍♀️

[Scott Adams]

This is an older study, but relevant:

 

[Teresa Dean]

13 minutes ago, Scott Adams said:

This is an older study, but relevant:

 

BINGO!!!!  This type of article and studies are what I have read after my nephew was diagnosed with celiac disease about a month ago but no Dr since his EARLY childhood ever mentioned celiac disease but the GP he chose after moving to a new area….. saw his skin and recognized it might be celiac disease.  She was absolutely correct all his test were positive!  
Therefore I feel even though my relative with certain celiac being my nephew and me with certain microscopic lymphocytic colitis it made and makes me wonder….. do I have celiac disease too.  Does it matter??  I feel it does matter….. because of the continued skin issues I have…… if I test for whatever factor that could be a marker for celiac and I go gluten feee lije my nephew…… then hopefully my skin will eventually improve.  I’m now 65…. I was 64 when I suddenly could do nothing after only a week stay at home 🏡 to be sure a bathroom was close at all times (even then most times not even at home) was the bathroom close enough.  I had heard the word colitis but knew zero about any type of colitis …. The same with celiac disease. Yet I have MLC and my nephew has celiac disease….. I can’t help but to think that I might have a celiac disease genetic component now that I have been reading about celiac disease.  I hope I don’t have celiac disease but I feel it’s worth testing even it the test is negative, positive or a could be.  To try gluten free and that lead to skin that is less than a nightmare that mine has become…… I only feel it is worth the test…… I also cannot believe that GIs do not test for both when either is being tested for. I know that MC is treated and misunderstood even by all in the medical field and when your GI treats the symptoms that is all they know to do….. they are done and you have the budesonide when you have a flare up of 24/7 diarrhea.  Yet now that I know of celiac disease and the possible chance it or MC can be found in both conditions, it only seems logical that a GI would test for both.  MC is VERY UNDERRATED, the plus plus plus plus plus plus plus is that it is not known to cause cancer like ulcerative colitis and Crohns yet it is known that MC can cause more diarrhea that the cancer causing gut horrors (many I have no idea of I’m certain). But MC I know for an absolute fact is a life changer ( no matter what age too).  Yes I’m 65 but the issues I now have are not because I was 64 last year and I turned 65 a few weeks ago. The MLC caused the issues I now have that keep me from going anywhere aside from home 99% of  the time….. I’m not whining I’m just saying!   After this article (much like the ones I have read) I feel I must be tested for celiac disease.  If gluten free can improve the mess my skin is in now and has been for so long….. it’s worth a try.  
Im 65 now and not a raging beauty but I try and I plan to not grow old gracefully if I can help it.  The unbelievable 24/7 diarrhea and skimpy diet I have and works best have caused tremendous weight loss …… my daughters on 2 separate days in the past month asked me (both knowing full well my days and nights were constant bathroom dashes for so long), yet they asked me “Mama are you anorexic?”.  I couldn’t believe they asked that knowing what I had dealt with for a year plus.  I said no…and I’m not, but after asked the second time I looked in the mirror and I understood why they asked!  Weird I don’t look in the mirror. But when you go nowhere, why look in the mirror (that’s what anorexic people do, and still feel as they are too heavy 😳 )….. I saw in my mirror my mamas 80 year old body with zero butt and so tiny every where.   No wonder they asked…… but the answer is still No. I just have to use caution ⚠️ when I eat!!!  All foods are not created equal ….. no guts are the same either..
thank you so much 

teresa….😁😁😁

attached me and my granddaughter a recent photo of 65 year old me with MLC and celiac disease to be determined…….

[RMJ]

I was tested (biopsy) for microscopic colitis because of urgency issues.  It turned out that I don’t have it, but my gastroenterologist said that it is more common in people with celiac disease.

[Jujuconnor]

14 hours ago, Teresa Dean said:

Does anyone have Celiac Disease with MLC also or MLC with Celiac Disease.  I have microscopic lymphocytic colitis…. Just this month after a LONG hard time of (for me and I know many others) unbelievable 24/7 symptoms of unbelievable diarrhea plus homebound I was finally diagnosed after 5 months of waiting and basically living on water, clear broth, rice and applesauce….with zero appetite along with thinking, looking, smelling and eating the best I could of these few things and weight was dropping fast and appointments were no rush (just hurry up & wait)….. so I waited. Initial appointment of Q & A and sent home with 6 bottles for stool samples and a colonoscopy scheduled for December 14, 2022 (the initial appointment was October 26, 2022). To get stool sample results was to call every day until Monday before Thanksgiving 2022 with the same response….. they were not able to give me the results because my GI had not signed off.  MY RESULTS….!!! I only hung up and I called right back but this time I asked for the office manager, transferred, no name asked or any questions.  The office manager answered maybe after only 2 rings. Tammy …. A real person that pulled up my patient information and gave me my results that no one else would.  All samples were negative for test ordered. I told Tammy I was desperate and I didn’t think it was going to be possible that I wait until December 14 for the colonoscopy. She said, I have a cancellation Wednesday (day before Thanksgiving)….. I said I’ll be there!!!  Finally the colonoscopy revealed Microscopic Lymphocytic Colitis.  I knew nothing of any kind of colitis but I had heard the word.  Yet ulcerative colitis and Crohns are the IBDs advertised on TV now ….. and both are (rightly so) well known because of cancer risk.  MLC and it’s partner  Microscopic Collagenous Colits are not known to cause cancer. But diarrhea can be more severe. It certainly was for me!!! Yet thankful to know it’s not known to cause cancer….. Nor are there any definitive causes for MC, only possible things that might cause it.  No one diet fits all so a few possible foods are a possible issue.  45 pounds less of me after 4 months and still loosing when diagnosed in December 2022, FINALLY!!!! The routine treatment was prescribed Budesonide and Cholestyromine powder packets for Bile Acid Malabsorption (BAM). Improvement was slow. But I slowly continued to be better. Finally July 2023 I was in remission…. November 2023 remission still continues (an occasional day of bathroom urgency). I weaned from Budesonide by May 2023. No GI follow ups were scheduled after May.  I eat with extreme caution…… weight is steady at 45 pounds less (120) fortunately I had gained a good 10 pounds before this condition hit out of the blue…… Just last month my nephew was (after 29 years) diagnosed with Celiac Disease.  I’m my research or MC I had read of Celiac Disease but it was never mentioned or tested for that I was told or have read in my notes. Yet. hearing of Celiac while doing my homework on MLC I C looked up Celiac again.   The main reason was that my nephew had as a boy and at his GP check up….. discovered he has Celiac Disease!!! I looked it up and now I wonder. Could I have Celiac and MLC orMLC and Celiac???? No one has said or tested for Celiac so after reading about it, I began to wonder…… 

Does anyone here have both, MLC  and Celiac?  What ‘flagged’ my nephews doctor was his skin. Face and  upper arms are red and have been for some time……symptoms but he was also tested for Celliac disease. Both a few skin issues and  such are symptoms and common with both.
I’d m like to be tested just so I know. Should  I be tested for Cdliac? MLC  is underrated  in severity.  I’ve  seen..,that was the  issue for my nephew (Celiac!?) is testing for Celiac advisable since I have MLC? Or is MLC is NO LONGER known to have a connection to MLC? 
 

I have read that celiac is hereditary………….now you have me wondering about MLC!   It a merry go round…..I haven’t lost much weight, only since they put me on thyroid medication around the same time as my celiac disease.  Besides the blood test, I had the colonoscopy.  ❤️

[Jujuconnor]

1 minute ago, Jujuconnor said:

I have read that celiac is hereditary………….now you have me wondering about MLC!   It a merry go round…..I haven’t lost much weight, only a few lbs since they put me on thyroid medication a few weeks ago. I had the blood test and colonoscopy for the celiac disease .  

 

[Teresa Dean]

I have decided I need to be tested for celiac because if I have any possible genetic marker for celiac I certainly will try absolutely gluten free diet.  I have no thyroid issues, all test for thyroid problems has been done….. I have thyroid nodules but they are checked each year by scans.  None have changed. 
I really think the affects that MLC can cause for some with such unbelievable symptoms that all who have MLC should be tested for celiac…… 45 pounds I lost in 3 months, my hair that my hairdresser always said “you have great thick hair”….. it’s no longer thick but I still have hair!!!!! If I can get something to help my skin I will feel better about myself even when or if I have a flare up.  I now have the medication to treat my gut if it I have a flare up and that should be a GREAT help since I won’t have to wait for appointments and it take 5 months to get a diagnosis and the medication to treat the MLC……

Take care of you too!

[Wheatwacked]

2 hours ago, Teresa Dean said:

Oh the microscopic colitis is not a misdiagnosis

I did not mean to say you don't have MLC but that they are missing the cause: malnutrition due to (at this point )assumed) Celiac Disease caused malabsorption syndrome and food avoidance.

What I think is to start GFD and vitamin replenishment to start healing. When you are feeling better, then go back and do the Gluten Challenge to verify.  If you improve, it may indicate either Celiac Disease or Non Celiac Gluten Sensitivity, either of which means no gluten.  From your description and nephews results, I think Celiac with the autoimmune effects.

        Vitamins, Minerals and MC   "Why are they unable to heal? Good question. Medical science doesn't seem to know the answer. We may not be medical scientists, but we don't have to ponder this quandary very long to recognize that if we were able to promote healing, microscopic colitis would be little more than a temporary tummy ache. Interestingly, most MC patients either are, or soon become deficient in vitamin D and magnesium. So let's look at the effect that this might have on our immune system."

 

2 hours ago, Teresa Dean said:

It got bad be for me FAST

The B vitamins, iodine, vitamin A deficiency all can have side effects that affect skin.  Your skin problems could be of a combination of multiple deficiencies.   

          10 Signs and Symptoms of Iodine Deficiency  An iodine deficiency may prevent hair follicles from regenerating. Fortunately, getting sufficient iodine can help correct hair loss that occurs due to an iodine deficiency.

[Teresa Dean]

22 minutes ago, Wheatwacked said:

I did not mean to say you don't have MLC but that they are missing the cause: malnutrition due to (at this point )assumed) Celiac Disease caused malabsorption syndrome and food avoidance.

What I think is to start GFD and vitamin replenishment to start healing. When you are feeling better, then go back and do the Gluten Challenge to verify.  If you improve, it may indicate either Celiac Disease or Non Celiac Gluten Sensitivity, either of which means no gluten.  From your description and nephews results, I think Celiac with the autoimmune effects.

        Vitamins, Minerals and MC   "Why are they unable to heal? Good question. Medical science doesn't seem to know the answer. We may not be medical scientists, but we don't have to ponder this quandary very long to recognize that if we were able to promote healing, microscopic colitis would be little more than a temporary tummy ache. Interestingly, most MC patients either are, or soon become deficient in vitamin D and magnesium. So let's look at the effect that this might have on our immune system."

 

The B vitamins, iodine, vitamin A deficiency all can have side effects that affect skin.  Your skin problems could be of a combination of multiple deficiencies.   

          10 Signs and Symptoms of Iodine Deficiency  An iodine deficiency may prevent hair follicles from regenerating. Fortunately, getting sufficient iodine can help correct hair loss that occurs due to an iodine deficiency.

You are very smart in the subject!!!!!!!!  I see no good reason that MC should be as bad as it can be!!!!  Yes the hair ….another issue for me!!!!!!!  My hair dresser used to tell me Wow…. You have great thick hair!  Not now….. I’m sooooo thankful it is not coming out like it was for months else I’d be bald or close to it….. MC if studied better I feel more medical knowledge would lead to cure rather than flare ups….. so thankful they have learned to treat it to vault or slow the symptoms until remission occurs.  
MC us definitely not a priority.  A few GIs get it then possibly more studies would be done…..

Great knowledge and advice 

Teresa

[Teresa Dean]

1 hour ago, RMJ said:

I was tested (biopsy) for microscopic colitis because of urgency issues.  It turned out that I don’t have it, but my gastroenterologist said that it is more common in people with celiac disease.

I now definitely think most with one if the two diagnosis that one diagnosis is highly likely to find out (if you are tested) that you will have both conditions!!!!!!

[Wheatwacked]

Are you on other meds, like blood pressure, cholesterol, or diabetes.  They can have debilitating effects on us.  Talk to your doctor about them.

[Teresa Dean]

35 minutes ago, Wheatwacked said:

Are you on other meds, like blood pressure, cholesterol, or diabetes.  They can have debilitating effects on us.  Talk to your doctor about them.

I am on no meds for any of these conditions.  My cholesterol is a o k, blood pressure is never high…. Usually low or a good low. I don’t have diabetes….. I’m a mystery but many mysteries exist!!!! 😁 in 2012 after a 3 year span of nobody knows until someone mebody knew!!!!! I was diagnosed with the rarely known yet now more known condition that now is easier to tell but hardly necessary most of the time as those symptoms are well managed now but a LONG journey to get to that diagnosis and longer still to be able to  get from point A to point B.  So few even drs and neurologists rarely recognized the condition…….  If I could only sing and if I were famous….. the 3 years to diagnose and even begin to have any kind of normal life……I finally was referred to 2 more neurologist…. Pick 1 or the other…… I picked Dr Jonathan Pearlstein…. Jasper, GA.  Two office visits and the symptoms plus his observation and a blood test …… visit 2 he said have you ever heard of stiff man’s syndrome….? No….  To be politically correct he said…. It is now called stiff person’s syndrome…. This is a rare condition he said , 1 in a million. The blood test wil show results of an antibody that will determine if you have SPS. He said after my first visit he thought about my symptoms and the ones I told him of (stiff and totally rigid like a board I’d just fall. No warning just body locked up and I’d fall). Backwards like a plank falls were the worse!!!!  None were good and the stiffness that would occur was time or some one especially my son to get behind me and quickly get me upright so I could, when home…. Be helped to bed with legs that were locked and stiff body being helped to lay down in bed.  At work was pathetic and sooo embarrassing…… I thought I was crazy!!! The call came in a week from Dr Pearlstein’s nurse…. The gad antibody test was positive…… the number was off the charts!!!! Appointment was scheduled….. treatment was clonazpam….plus a referral to Emory Neurology in Atlanta for second opinion as I was Dr Ps first SPS.  He is TOPS… he said this…. “The best thing I learned in medical school is, ‘if you will listen to your patients they can usually tell you what is wrong with them’.   The only dr I’ve EVER heard utter anything close to so real and true.  Little relief was the clonazepam….. he prescribed diazepam and Gabapentin. I went to Emory and the nurtologist confirmed SPS diagnosis….. he said your dr did his homework. He walked me & husband down the hallway and he said “where is your walker?”  And was sick but I knew he was likely right….. he doubled the doseage of diazepam and said take 2 when you get to your car and when you get home 🏡 you will feel better and relaxed. SPS is autoimmune and the recognition is now more known ….. If you know one of the best singers alive today ‘Celine Deon’ she was diagnosed I think 🤔 maybe about a year ago with SPS.  It’s real and it’s crazy (it’s real crazy) but it’s not because the few who have it are truly crazy (I’m questionable😂) but my first big life changer …. Until the microscopic lymphocytic colitis….. the SPS after I retired early from work in 2013 age 54….. it was an adjustment to retire but  the symptoms were much improved with less stress.  The colitis gave me no option but to basically forget the SPS …  I had to dash to the bathroom 🚽 walking or crawling…… I fell one fay after I got in the bathroom and broke a rib.  So yes to one comment 2 autoimmune disorders adds more fuel to the fire.  I’m soooooooo Thankful to be improved and now so accustomed to being home it doesn’t bother me one bit to be at home. I feel best at home. Yet when I do land in a social setting I tend to talk a good bit …… maybe from lack of communication most days.  2 siblings died 6 months apart from leukemia and my friends list is short and my sister was my best friend aside my own family, who work and time to talk is limited. My brother had issues that required he have extra care before he was diagnosed with leukemia and he was in assisted living.   I was his every thing after our mother died in 2015 …… leukemia. Where leukemia came from ???????  3 in a row was too much but we do what we have to….. even when our best feels it’s not enough!   October 1, 2021 brother age 69 died leukemia I was right with him. April 8, 2022 after a 3 month clinical trial (failed terribly)….. home with no other options January 27, 2022…. 2 weeks was all myself and my son expected my sister to live….. but she lived until April 8, 2022. She secluded, her choice. Food left on her porch …… she lived next to our baby sister and her husband who became primary caregivers…… but only to check in.  Sister wanted no one hovering …… she had her space…. She did what she could and it was a miracle what she did…… I saw her shortly 2 x before she died……to die was to go to the ER by 911 and to admit but once given pain and agitation meds she died….. my sister & brother n law holding her hands….the toughest to think about because I didn’t see but I see anyway …… she was 65.  So I’m in GREAT health…!!!! I am soooo serious.  I like all of you know SICK and likely all have see SOOOOO SICK!!!!!! I’m thin but thinner is way more than me!!!!

 

[Wheatwacked]

Quite the journey.  I emphasize with you and am sorry for your losses.

The key to recovery has to start by fixing your nutritional deficiencies.  Since you are on a very restricted diet, and I truly understand your hesitation to change anything you need to fortify your diet.  Perhaps a doctor who specializes in malnutrition can help you.  But find someone who is sympathetic to Celiac Disease.

I started GFD at 63, Thanksgiving 2014  These are the vitamins I take.  Each showed improvement then I would hit a plateau.

• 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder).
• 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism.
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenouslybut not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine).
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp.  For some people with DH, iodine can exasperate the rash.

Edited November 10, 2023 by Wheatwacked

[Teresa Dean]

29 minutes ago, Wheatwacked said:

Quite the journey.  I emphasize with you and am sorry for your losses.

The key to recovery has to start by fixing your nutritional deficiencies.  Since you are on a very restricted diet, and I truly understand your hesitation to change anything you need to fortify your diet.  Perhaps a doctor who specializes in malnutrition can help you.  But find someone who is sympathetic to Celiac Disease.

I started GFD at 63, Thanksgiving 2014  These are the vitamins I take.  Each showed improvement then I would hit a plateau.

• 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder).
• 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism.
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenouslybut not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine).
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp.  For some people with DH, iodine can exasperate the rash.

I truly appreciate the information you have shared.  I am going to screen shot all the vitamins you take….. I feel you unlike any dr (GI most definitely, numb attitude about MLC)….. I’ve gathered from several articles I’ve read that once a GI has treated you for MC (any type) and you respond and wean they have feel they have done their part and tell you without saying it (good bye and good luck)…… so I have very little respect for a specialist that says see you in 10 years for a colonoscopy and seems to feel good that you are better but no need to even follow up in 2 or 3 years to at least see how you are doing.  
Had my issues with MC not have been what I felt were to me and my husband and family basically unbelievable I doubt I’d feel this way.  But now I do and I feel like I’m one less patient that he’s done all he knows to do for and he really hopes to not see me or anyone with MC when their symptoms are headed in the direction of remission because he knows nothing else to do for MC (which is what any article says about MC…..rare but likely more common than known, because many GIs never check for MC). So I am be Thankful and Grateful that he did biopsies when I finally was scheduled for my colonoscopy. Had I gone to a GI that did not check for MC …. I feel I’d have eventually landed in an ER because of definite dehydration and/or malnutrition.  Possibly close to death even.   This may sound outrageous but this time last year i had had my initial appointment on October 26 and the next scheduled appointment was December 14 for the colonoscopy. My husband took me to an urgent care the Saturday evening before the week of Thanksgiving 2022 and all the PA could do was prescribe a medication for stomach pain and told me to call my GI Monday because like the old saying says, the squeaky wheel gets the grease! I had called every single day after I suppose was a week and a half after the October 26 appointment because I was given 6 bottles for stool samples (no ‘stools’) but plenty of liquid samples were taken back to the office but never a call….. so I started calling….. but every call, every day was the same answer…… I can’t give you the results because the dr hasn’t signed off yet… I told the person who answered one day…. I want my results ….. they are MY RESULTS….. no matter I was not getting my results because the GI had not signed off.  I asked another day can I be put on a cancellation list….. told, we don’t have a cancellation list.  This is a GI group that from the area I live I don’t know anyone that I know who goes to any other group or GI.  It’s over an hour to the office….. we live in Gods Country of NE GA but the best drs in our area that are closest are in Gainesville, GA. I rocked on as best as I could until the Saturday evening at the quick care. I did what he said (although I had been squeaking every day just to hope to get my stool sample results). Had the distance and my 24/7 urgency for the need of a toilet 🚽 not been so major I would have gone and made myself known at the checkin desk.  I just wasn’t able…… Monday I called, no different than all the other calls and explanations, questions with the same nothing answers…..we said our good byes. I was stewing mad …… but “the light 💡 “ went off ….. straight from heaven…… call back and ask for the office manager…. I did just that. The one who answered did not ask my name or any questions…… my call was ringing the extension of the office manager…… she answered.  She was my golden ticket …. She pulled up my patient info.  The sample results were told to me, no questions asked….. all the test were negative for what they were tested for! Well???? I now know the office managers name and I told Tammy ….. I don’t know how I can wait until December 14 for the colonoscopy. Tammy says I have a cancellation Wednesday (day before Thanksgiving).  Oh what a wonderful Thanksgiving I told her….. I’ll be there!   I prepped and I was there….. a different Dr she had told me but that was a definite non issue!!!!!!! It was still weeks as in December 9th before I called the office because my drugstore text me that I had a prescription to pick up.  I assumed a possible refill (that maybe I’d forgotten???). Husband picked it up and I took it out of the bag and it was Budesonide???? Never heard of it and prescribed by the GI.   I look up the Rx and it’s a corticosteroid….. I don’t like such but what and why. I called Tammy. She said yes after looking at my records. She said apparently the prescription was filled before the staff had time to call. The instructions were so vague “take 3 a day”…. Morning , Noon and Night????? When I looked it up I read it is taken 3 at one time every morning before breakfast.  Tammy said the Dr wants you to take the med and schedule a follow up to see if the medication is helping…… ok I say…. But Tammy how do I take it and what is it for. She had me to hold to ask a nurse for the correct answers.  I told her what I looked up said take all at one time each morning. She was 30 seconds and back on saying your research is correct …..take all 3 every morning because you have colitis and she scheduled me for January 3, 2023 for the follow up.  I told her I wasn’t a fan of steroids but she said you really need to take the med so he can see if it is helping at the follow up. I agree and I do what I do….. I look up colitis….. I find 3 that I had no idea there was more than 1.  I read them all…. Ulcerative, MLC & MCC….. I narrowed down to MLC it seemed to fit me….. but the word Lymphocytic was troubling to me plus other words that one word led to.  Words I had heard and knew to not like them, the words were words I had heard with caring for and appointments, and clinical trials for leukemia.  Oh well ….. I don’t know???? Leukemia I don’t see as a word BUT????? So I finally go to the follow up.  Much better but no where near to what I had read was the goal “remission”.  The GI with his blank personality and I wonder….. does he have a clue or just doesn’t care?????  He asked how I was and if my symptoms were improving…… yes, but still going a good bit and quickly.  He says you have microscopic lymphocytic colitis….. I say …. Uhhh stop right there …. I need to know if this is any sign of leukemia….. he said no, not related. A relief…….little more was said and a month come back continuing med as I was….. plus added cholestyramine powder for BAM (Bile Acid Malabsorption) I bet you know this! 
My daughter had suspected BAM and I asked him about it…… very likely he said…… and he can prescribe the prescription for that. Had I not mentioned BAM….. he would not have mentioned it I’m certain.  No point I tell you any more details of why my daughter suspected BAM….. but I’m thankful again for my family who cares, the internet and the office manager Tammy…… AND the GI too for taking biopsies to check for MC.  I have learned regarding MC….. it’s rare and not enough studies .  Treatment is all you get and that it works is the goal.  After taking until follow up 3 he wanted me to wean and be off the med if possible by appointment follow up May 8. I weaned .  I did good but true remission was in July. I have an occasional day of off and 3 - 4 bathroom runs…… and cautiously continue to eat what works best….. not much…… I don’t even get hungry much at all. But June 2023 my blood work with my GP was per the results EVERYTHING absolutely normal and he said it just that way because I had insisted check my blood for deficiencies and anything you can.  
So I’m a very thin statistic with MLC that is said to be for life but I’ve done well since remission (as I call it) came at some point in July…….. I am returning to my GP I had seen after the one we had for YEARS retired.  I don’t even know why I changed….. the GP that did the blood work I had decided I’d go to because he was my brothers GP and so kind and good to my brother.   But I wasn’t pleased with his kind but arrogant seeming attitude about my “absolutely normal” blood work and suggested I take an anxiety med.  I’ve taken anxiety meds…. But MC has one and a few more possible but uncertain causes…… one is certain meds and 1 suspected is such meds for anxiety, etc. No thank you!!!!!  My gut needs to heal doc!!! So again ……. Thank you ……. I will be seeking celiac disease testing and a Dr who knows and cares (if there is one) and I will look over the vitamins you take. I am a part of the MC Foundation too…… few are involved aside the founder …… Wayne Persky.  He’s not a Dr but like the gentleman that started this celiac disease website, etc. Mr Persky started his own research because when he had MC the GI at that time told him he was fine and nothing was found to be wrong at all and he needed to find a good psychiatrist. Mr. Persky responds personally to every email from the first one I sent and his story is just unbelievable…… the last time he saw that GI and I don’t think he sees one since????? But he said he told the GI….. my issue is coming out of my butt, not my brain!!!!!!  He has I know 2 books ….. this gut stuff affects EVERYTHING about a person’s health is my conclusion.  Again I say I’m thankful!!!!  As MC is not known to cause cancer….. BUT do I have celiac disease too???? I will find out…..

Thank you sooo much…..

 

 

 

 

 

 

[Wheatwacked]

5 hours ago, Teresa Dean said:

Bile Acid Malabsorption

work on increasing choline.

Quote

 

Diet & Bile Acid  Malabsorption  "Bile acid sequestrants can interfere with your absorption of fat soluble vitamins (vitamins A, D, E & K). If you are taking these medications it is recommended that you should also take a daily multivitamin and mineral supplement, ensuring it is either an A-Z supplement or 100% complete. You may also find it helpful to eat smaller, more frequent meals and avoid long periods without eating.

 

5 hours ago, Teresa Dean said:

suggested I take an anxiety med

very common response.

[Wheatwacked]

Budesonide is a corticosteroid that like prednisone.  It's advantage is that is doesn't seem to cause Secondary Adrenal Insufficiency.  If it helps, take it.  As you heal from the Gluten Free Diet and replete your vitamins and minerals and start to store some, your need for the Budesonide will go down.  Not remission, but healing.

I needed 30 mg and even more of prednisone daily to function at first.  As I healed after starting GFD it has gone down. Because of adrenal cortex atrophy causing Adrenal Insufficiency from the prednisone I require a maintenance dose.  Some recommend double dose every other day most recommend the whole days amount one time in the morning.  For me, I do best on 5 mg at 6 am and 5 mg at 6 pm.  Stressful situations I need more because I don't make my own steroids. Normally the adrenal cortex releases from 5 to 100 mg of cortisol. There doesn't seem to be much difference other than school of thought.

              A Comparison of Budesonide and Prednisone for the Treatment of Active Pediatric Crohn Disease   "These properties suggest that oral budesonide would be ideally suited for diseases characterized by intestinal inflammation."

[Katerific]

I am a 64 year old woman.  1 year ago, I was diagnosed with both Microscopic Collagenous Colitis and Celiac Disease after having a colonoscopy and an endoscopy.  I took Budesonide for 2 months, got better and then relapsed shortly thereafter, as do many people.  I followed Wayne Persky's advice for several months and didn't do well at all.  I signed up for online coaching with a group of registered dietitians that specialize in IBD.  It really helped me understand the need to nourish the gut biome to put the MC into remission.  For the last 9 months, I haven't had anywhere near problems.  Prior to that, I was having diarrhea up to 20 times a day and in the night, even while being strictly gluten free.  I am eating gluten free of course, plus minimizing raw vegetables, but eat a variety of cooked vegetables and non-gluten grains (quinoa, millet - both certified gluten free).  Excessive amounts of nuts (more than 1 oz a day) seems to kick up my MC symptoms.  I follow a plant based diet and I feel well nourished.  It is a difficult journey putting MC into remission.