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Still experiencing pain on my gut after 2.8 years on the gluten free diet


Raquel2021
Go to solution Solved by Wheatwacked,

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Raquel2021 Collaborator

Hello all,

I experienced horrendous pain on the left side of my abdomen for years before being diagnosed with celiac disease.  Stabbing, sharp pain. Once I adopted the gluten-free diet my pain improved but it has never completely gone away.  I suspect I had this disease for at least a decade before diagnosis as my Dr was clueless.  My question for you is, is this normal? Are you pain free? I recently visited a neurologist for neurolical  symptoms and she told me to recheck my diet as she thought my symptoms could be due to still ingesting traces of gluten.  I have not been able to raise my iron levels even though I take a strong iron supplement.  My b12 is on the low end . This tells me I am still having issues with absorption. My vitamin D is good. Thanks for reading.  Hoping to find an answer in regards to the pain. Thanks


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Nick Cheruka Contributor

It could be something other than Celiacs! Maybe IBS/BD you should consult your GI or primary care Dr! See if they will do an Ultra sound or what they think it may be! I have a  dull to sharp pain on my left lower abdomen but no Dr has been able to determine what other than guessing and I have had all scans I was diagnosed over 20yrs ago with Celiacs and have been strictly gluten-free since! All I here is it could be scar tissue build up from 2-Hernia ops and 2-Spinal Fusions one thru the back one thru the front! Good Luck☘️I hope you get an answer! 

Just now, Nick Cheruka said:

It could be something other than Celiacs! Maybe IBS/BD you should consult your GI or primary care Dr! See if they will do an Ultra sound or what they think it may be! I have a  dull to sharp pain on my left lower abdomen but no Dr has been able to determine what other than guessing and I have had all scans I was diagnosed over 20yrs ago with Celiacs and have been strictly gluten-free since! All I here is it could be scar tissue build up from 2-Hernia ops and 2-Spinal Fusions one thru the back one thru the front! Good Luck☘️I hope you get an answer! 

Irritable Bowel Syndrome, Irritable Bowel Disease!!

Raquel2021 Collaborator
4 hours ago, Nick Cheruka said:

It could be something other than Celiacs! Maybe IBS/BD you should consult your GI or primary care Dr! See if they will do an Ultra sound or what they think it may be! I have a  dull to sharp pain on my left lower abdomen but no Dr has been able to determine what other than guessing and I have had all scans I was diagnosed over 20yrs ago with Celiacs and have been strictly gluten-free since! All I here is it could be scar tissue build up from 2-Hernia ops and 2-Spinal Fusions one thru the back one thru the front! Good Luck☘️I hope you get an answer! 

Irritable Bowel Syndrome, Irritable Bowel Disease!!

Thanks. Even if it was IBS I think there is no treatment other than gluten-free diet. I have told my Dr but she is not very helpful.  It is also possible that because we had undiagnosed celiac for soo long the gut never fully heal

Nick Cheruka Contributor
16 minutes ago, Raquel2021 said:

Thanks. Even if it was IBS I think there is no treatment other than gluten-free diet. I have told my Dr but she is not very helpful.  It is also possible that because we had undiagnosed celiac for soo long the gut never fully heal

Hi, Raquel2021 If it is IBS/IBD a Low Fodmap diet is what should be recommended to follow it is also called a Mediterranean Diet as well if I am not mistaken you can google a list of Low Fodmap foods as well as foods to avoid going on it! As far a Celiacs is concerned if you are diagnosed it can take months to or longer at times depending how much damage was done also you need to make sure your not ingesting gluten unknowingly! Also there is a form of Celiacs called Refractory Celiacs where even being gluten free your autoimmune system does not respond to a gluten-free diet and like Celiacs there is no cure for this as well! Refractory Celiacs do not respond to the gluten-free diet and can continue to have Villous Atrophy even while on a gluten-free diet which can and has led to a form of Cancer called Enteropathy T-Cell Lymphoma! One of many reasons why getting a concrete diagnosis regarding Celiacs or Refractory Celiacs is Extremely Important! I’m not a Dr. nor do I work or Volunteer for this site in anyway, I am a Celiac of over 20+yrs that has educated myself on Celiacs and Refractory Sprue/Refractory Celiacs so I know what I have and how to deal with it best as well as help educate anyone with Celiacs or Refractory Sprue the non-responsive form of Celiacs! I hope this info helps you in some way? I know how frustrating it can be especially if your not informed or informed correctly! Prior to my diagnosis over 20yrs ago I personally had never heard of Gluten, so when my then GI Dr. that did the endoscopy with biopsy called me to tell me the pathologist report came back Celiacs and to go Gluten Free, I responded ok what the heck is gluten! His response then was wheat, barley and Rye! Then said avoid it for life and see a dietician! Never saw the dietician I started researching what I could find back then and also linked up with a Celiac GI group in UVA in Va. to get educated the best I could but 90% of what I know about Celiacs and Celiac Sprue I have done the research myself then asked GI Dr’s what they new and found out they new very little! Some have come a long way, others have little to say!

Nick Cheruka Contributor
1 minute ago, Nick Cheruka said:

Hi, Raquel2021 If it is IBS/IBD a Low Fodmap diet is what should be recommended to follow it is also called a Mediterranean Diet as well if I am not mistaken you can google a list of Low Fodmap foods as well as foods to avoid going on it! As far a Celiacs is concerned if you are diagnosed it can take months to or longer at times depending how much damage was done also you need to make sure your not ingesting gluten unknowingly! Also there is a form of Celiacs called Refractory Celiacs where even being gluten free your autoimmune system does not respond to a gluten-free diet and like Celiacs there is no cure for this as well! Refractory Celiacs do not respond to the gluten-free diet and can continue to have Villous Atrophy even while on a gluten-free diet which can and has led to a form of Cancer called Enteropathy T-Cell Lymphoma! One of many reasons why getting a concrete diagnosis regarding Celiacs or Refractory Celiacs is Extremely Important! I’m not a Dr. nor do I work or Volunteer for this site in anyway, I am a Celiac of over 20+yrs that has educated myself on Celiacs and Refractory Sprue/Refractory Celiacs so I know what I have and how to deal with it best as well as help educate anyone with Celiacs or Refractory Sprue the non-responsive form of Celiacs! I hope this info helps you in some way? I know how frustrating it can be especially if your not informed or informed correctly! Prior to my diagnosis over 20yrs ago I personally had never heard of Gluten, so when my then GI Dr. that did the endoscopy with biopsy called me to tell me the pathologist report came back Celiacs and to go Gluten Free, I responded ok what the heck is gluten! His response then was wheat, barley and Rye! Then said avoid it for life and see a dietician! Never saw the dietician I started researching what I could find back then and also linked up with a Celiac GI group in UVA in Va. to get educated the best I could but 90% of what I know about Celiacs and Celiac Sprue I have done the research myself then asked GI Dr’s what they new and found out they new very little! Some have come a long way, others have little to say!

That upper comment should have said informed incorrectly! Sorry!

Nick Cheruka Contributor
8 hours ago, Nick Cheruka said:

That upper comment should have said informed incorrectly! Sorry!

Also with your vitamin B12 being low that may not be an absorption issue, that may be your not getting enough foods containing B12 or consuming enough if you are! I would say if it were because of your villi not absorbing you would have issues across the board with vitamins, mineral and nutrients all together! I was low in B12 approx 3 months ago and all other levels were fine so I started taking 1000mcg’s of B12 with an added B-complex and that brought my levels up from under 200 to well over 750 in less than 2 months and I see a big change in my energy levels! It has helped immensely! My low count level prior to that was from not getting enough from what I may have or may not have been eating to get the needed amount so supplementing with both of these B12-B-Complex did the trick! Good Luck☘️with your issues I hope I was of some kind of help!

  • Solution
Wheatwacked Veteran
On 10/1/2023 at 2:34 PM, Raquel2021 said:

My question for you is, is this normal? Are you pain free?

Not normal,  That's what doctors say when the drugs don't work.  Low vitamin D and low Choline can cause gastroparesis.  Choline is the major salt found in Bile, so low choline can cause symptoms similar or leading to gallbladder disease, poor fat digestion.  Also, brain fog, low energy and more.  The RDA is 550 mg a day.  Less than 10% eat enough.

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

If you are low on B12, there is a good chance you are low on the other B vitamins.

On 10/1/2023 at 2:34 PM, Raquel2021 said:

My vitamin D is good.

What do you consicer good?  I maintain mine at 80 ng/ml (200 nmol/L) by daily taking 10,000 IU (250 mcg).  That is the level we store up to in summer (with enough sunlight) to make it through the winter.  One symptom of not enough is Seasonal Affective Disorder.  Winter Doldrums.

Quote

 

“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy, “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them".... According to McCarthy, his target range is based upon several factors:

  • A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL [80 ng/ml is equivelent to 200 nmol/L]  (nature’s level) were associated with no adverse effects;
  • Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
  • Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL   benefits of vitamin D

 


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Raquel2021 Collaborator
11 hours ago, Wheatwacked said:

Not normal,  That's what doctors say when the drugs don't work.  Low vitamin D and low Choline can cause gastroparesis.  Choline is the major salt found in Bile, so low choline can cause symptoms similar or leading to gallbladder disease, poor fat digestion.  Also, brain fog, low energy and more.  The RDA is 550 mg a day.  Less than 10% eat enough.

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

If you are low on B12, there is a good chance you are low on the other B vitamins.

What do you consicer good?  I maintain mine at 80 ng/ml (200 nmol/L) by daily taking 10,000 IU (250 mcg).  That is the level we store up to in summer (with enough sunlight) to make it through the winter.  One symptom of not enough is Seasonal Affective Disorder.  Winter Doldrums.

Thank you. My vitamin D is 96 ng/ml. I just had it tested. I also don't have a gallbladder after the surgery my celiac symptoms really got 10 times worse. So you experience no gut pain? My celiac antibodies are normal but I am beginning to think my symptoms could be caused by the gluten free bread I eat everyday day or rice. 

Raquel2021 Collaborator
On 10/1/2023 at 9:21 PM, Nick Cheruka said:

Hi, Raquel2021 If it is IBS/IBD a Low Fodmap diet is what should be recommended to follow it is also called a Mediterranean Diet as well if I am not mistaken you can google a list of Low Fodmap foods as well as foods to avoid going on it! As far a Celiacs is concerned if you are diagnosed it can take months to or longer at times depending how much damage was done also you need to make sure your not ingesting gluten unknowingly! Also there is a form of Celiacs called Refractory Celiacs where even being gluten free your autoimmune system does not respond to a gluten-free diet and like Celiacs there is no cure for this as well! Refractory Celiacs do not respond to the gluten-free diet and can continue to have Villous Atrophy even while on a gluten-free diet which can and has led to a form of Cancer called Enteropathy T-Cell Lymphoma! One of many reasons why getting a concrete diagnosis regarding Celiacs or Refractory Celiacs is Extremely Important! I’m not a Dr. nor do I work or Volunteer for this site in anyway, I am a Celiac of over 20+yrs that has educated myself on Celiacs and Refractory Sprue/Refractory Celiacs so I know what I have and how to deal with it best as well as help educate anyone with Celiacs or Refractory Sprue the non-responsive form of Celiacs! I hope this info helps you in some way? I know how frustrating it can be especially if your not informed or informed correctly! Prior to my diagnosis over 20yrs ago I personally had never heard of Gluten, so when my then GI Dr. that did the endoscopy with biopsy called me to tell me the pathologist report came back Celiacs and to go Gluten Free, I responded ok what the heck is gluten! His response then was wheat, barley and Rye! Then said avoid it for life and see a dietician! Never saw the dietician I started researching what I could find back then and also linked up with a Celiac GI group in UVA in Va. to get educated the best I could but 90% of what I know about Celiacs and Celiac Sprue I have done the research myself then asked GI Dr’s what they new and found out they new very little! Some have come a long way, others have little to say!

Thank you. I have also done my own research.  This forum has been more helpful than any doctor. My celiac antibodies are normal now, so I think that might rule out refractory celiac disease. 

Nick Cheruka Contributor
1 hour ago, Raquel2021 said:

Thank you. I have also done my own research.  This forum has been more helpful than any doctor. My celiac antibodies are normal now, so I think that might rule out refractory celiac disease. 

Raquel2021, Your more than welcome and yes I would agree this site and others are very helpful with the helpful people on it and yes Dr’s need to get up to date with Celiacs but they can and do make $$$ without having to do that so needless to say they are not much help if any at all! I did find a Celiac Group of GI Dr’s at UVA when I was back in Va same place I got my diagnosis over 20+yrs ago and they were way more advanced than anyone GI Dr or GI Dr group I’ve seen since! I however have been in SW Florida almost 12yrs now and Celiacs here with PCP and GI Dr’s act like you just mentioned the devil himself when asking if they have info or can answer questions or know about Celiacs other than the name and going gluten-free they are clueless. Like I said on here and to other Celiacs I meet off here, we are not in this alone as we are all in it together and together we can and will find a quality of life with Celiacs we all can live happily by!🙂Good Luck☘️Stay Strong💪

Blue-Sky Enthusiast

You could have:

https://en.wikipedia.org/wiki/Duodenitis

H. Plyori bacteria causes stomach ulcers and it reduces stomach acid production. Reduced stomach acid production allows for H. Plyori colonies to survive in the stomach.

https://biologydictionary.net/pyloric-sphincter/

In celiac disease (it may get better on completely gluten free diet) there tends to be delayed stomach emptying. This is caused by reduced muscle contractions in the stomach, which are caused by reduced hormone signalling.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8135131/

Cholecystokinin is reduced in active celiac disease, and other hormones might also be reduced.

If the pyloric sphincter is not working correctly this could cause a lot of IBS related symptoms and inflammation.

https://www.naturalmedicinejournal.com/journal/successful-eradication-helicobacter-pylori-over-counter-products

In the link above they used mastic gum 3x daily which is a soluble fiber. It would for a gel which may help the pyloric sphincter close all the way.

This might aggravate stomach ulcers in the short term, but maybe helpful overall.  Also tryptophan or melatonin powder may be helpful.

scarlett23 Newbie
On 10/1/2023 at 2:34 PM, Raquel2021 said:

Hello all,

I experienced horrendous pain on the left side of my abdomen for years before being diagnosed with celiac disease.  Stabbing, sharp pain. Once I adopted the gluten-free diet my pain improved but it has never completely gone away.  I suspect I had this disease for at least a decade before diagnosis as my Dr was clueless.  My question for you is, is this normal? Are you pain free? I recently visited a neurologist for neurolical  symptoms and she told me to recheck my diet as she thought my symptoms could be due to still ingesting traces of gluten.  I have not been able to raise my iron levels even though I take a strong iron supplement.  My b12 is on the low end . This tells me I am still having issues with absorption. My vitamin D is good. Thanks for reading.  Hoping to find an answer in regards to the pain. Thanks

I also have celiac but even on gluten free diet have problems with stomach pain diarrhea and vitamin malabsorption.  I just found out I have bile malabsorption syndrome. So maybe u could get tested for this.  U have to take medicine for this and low fat diet 

Raquel2021 Collaborator
10 hours ago, scarlett23 said:

I also have celiac but even on gluten free diet have problems with stomach pain diarrhea and vitamin malabsorption.  I just found out I have bile malabsorption syndrome. So maybe u could get tested for this.  U have to take medicine for this and low fat diet 

Thank you. Did you have your gallbladder removed? I had mine taken out and that I'd when the nightmare really began. I was diagnosed with celiac after that. Thanks again for your reply 

Beverage Rising Star
On 10/1/2023 at 11:34 AM, Raquel2021 said:

Hello all,

I experienced horrendous pain on the left side of my abdomen for years before being diagnosed with celiac disease.  Stabbing, sharp pain. Once I adopted the gluten-free diet my pain improved but it has never completely gone away.  I suspect I had this disease for at least a decade before diagnosis as my Dr was clueless.  My question for you is, is this normal? Are you pain free? I recently visited a neurologist for neurolical  symptoms and she told me to recheck my diet as she thought my symptoms could be due to still ingesting traces of gluten.  I have not been able to raise my iron levels even though I take a strong iron supplement.  My b12 is on the low end . This tells me I am still having issues with absorption. My vitamin D is good. Thanks for reading.  Hoping to find an answer in regards to the pain. Thanks

My sister has diverticulitis, and it's usually a severe pain in lower left intestinal area. Has that possibility been explored?

Raquel2021 Collaborator

Thank you. My pain is in the upper left abdomen. I call it the gluten pain. Now that I am gluten free it did improve considerably but has not gone away completely. 

Nick Cheruka Contributor
1 hour ago, Raquel2021 said:

Thank you. My pain is in the upper left abdomen. I call it the gluten pain. Now that I am gluten free it did improve considerably but has not gone away completely. 

Hi Raquel2021, I to have the same pain lower to middle left abdominal area! I have mentioned it to my GP and GI which neither were any help! I have noticed it increases more prior to a bowel movement then once I use the bathroom it lessens but does not go away! I’m going to my new GP in January and I am going to ask for an Ultra-sound of that area to see if that detects anything abnormal! I was told prior it could be IBS/IBD! Good Luck☘️I know it can be frustrating to say the least!

Nick Cheruka Contributor
Just now, Nick Cheruka said:

Hi Raquel2021, I to have the same pain lower to middle left abdominal area! I have mentioned it to my GP and GI which neither were any help! I have noticed it increases more prior to a bowel movement then once I use the bathroom it lessens but does not go away! I’m going to my new GP in January and I am going to ask for an Ultra-sound of that area to see if that detects anything abnormal! I was told prior it could be IBS/IBD! Good Luck☘️I know it can be frustrating to say the least!

Also I was diagnosed with Celiacs well over 20+yrs ago and this pain has been there for approx 3-4yrs now and no one can say what it is just guess’s so thats why I am going to ask for the ultra sound as it could be a number of things!

Eldene Contributor
On 10/2/2023 at 11:53 AM, Nick Cheruka said:

Also with your vitamin B12 being low that may not be an absorption issue, that may be your not getting enough foods containing B12 or consuming enough if you are! I would say if it were because of your villi not absorbing you would have issues across the board with vitamins, mineral and nutrients all together! I was low in B12 approx 3 months ago and all other levels were fine so I started taking 1000mcg’s of B12 with an added B-complex and that brought my levels up from under 200 to well over 750 in less than 2 months and I see a big change in my energy levels! It has helped immensely! My low count level prior to that was from not getting enough from what I may have or may not have been eating to get the needed amount so supplementing with both of these B12-B-Complex did the trick! Good Luck☘️with your issues I hope I was of some kind of help!

How often should we have a full blood count for malabsorption of nutrients? Tx!

trents Grand Master

About every 6 months I would say until you start to see them normalize.

Scott Adams Grand Master

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

Wheatwacked Veteran

Not being impertinent but are you sure it is ng/ml. 96 is higher than normally seen. Canada uses nmol/L.

96 nmol/L = 39 ng/ml.  It took me years at 10,000 IU a day to get to 80 ng/ml (200 nmol/L).  A lifeguard in summer measures 70 to 90 ng/ml.  My son is a county ocean guard in South Florida and last year his D was low enough for his doctor to recommend supplementing.  It is because of all the sunscreen and protective gear they use on the beach.  20 minutes in summer unprotected sunlight creates 10,000 IU.

On 10/3/2023 at 2:46 PM, Raquel2021 said:

My celiac antibodies are normal but I am beginning to think my symptoms could be caused by the gluten free bread I eat everyday

That is quite possible.

Yes when I am taking the choline - no gut issues.  Made the mistake of stopping it in early September and the gut issues came back a few weeks ago.  Started the choline on monday, today no problem.  I take phosphatidyl choline because it is the form we get in food and doesn't need to be processed by the liver.  840 mg pcholine = 500 mg choline.  Safe upper limit is 3500 mg.

On 10/10/2023 at 4:10 PM, Beverage said:

My sister has diverticulitis, and it's usually a severe pain in lower left intestinal area.

Low choline can cause divericulitis.

On 10/4/2023 at 10:55 PM, scarlett23 said:

I also have celiac but even on gluten free diet have problems with stomach pain diarrhea and vitamin malabsorption.  I just found out I have bile malabsorption syndrome. So maybe u could get tested for this.  U have to take medicine for this and low fat diet 

Try the Choline.  Sorry to be a pessimist but they will take out your gallbladder first.  I use Phosphatidyl Choline 840 mg = 500 mg choline because it is the form we get in food (eggs, liver, beef steak) and doesn't need to be processed by the liver first.  You should target about 1000 mg choline a day for quickest results.

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

          NIH Choline Fact Sheet for Consumers  The diets of most people in the United States provide less than the recommended amounts of choline. Even when choline intakes from both food and dietary supplements are combined, total choline intakes for most people are below recommended amounts.

Raquel2021 Collaborator
On 10/11/2023 at 6:56 PM, Wheatwacked said:

Not being impertinent but are you sure it is ng/ml. 96 is higher than normally seen. Canada uses nmol/L.

96 nmol/L = 39 ng/ml.  It took me years at 10,000 IU a day to get to 80 ng/ml (200 nmol/L).  A lifeguard in summer measures 70 to 90 ng/ml.  My son is a county ocean guard in South Florida and last year his D was low enough for his doctor to recommend supplementing.  It is because of all the sunscreen and protective gear they use on the beach.  20 minutes in summer unprotected sunlight creates 10,000 IU.

That is quite possible.

Yes when I am taking the choline - no gut issues.  Made the mistake of stopping it in early September and the gut issues came back a few weeks ago.  Started the choline on monday, today no problem.  I take phosphatidyl choline because it is the form we get in food and doesn't need to be processed by the liver.  840 mg pcholine = 500 mg choline.  Safe upper limit is 3500 mg.

Low choline can cause divericulitis.

Try the Choline.  Sorry to be a pessimist but they will take out your gallbladder first.  I use Phosphatidyl Choline 840 mg = 500 mg choline because it is the form we get in food (eggs, liver, beef steak) and doesn't need to be processed by the liver first.  You should target about 1000 mg choline a day for quickest results.

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

          NIH Choline Fact Sheet for Consumers  The diets of most people in the United States provide less than the recommended amounts of choline. Even when choline intakes from both food and dietary supplements are combined, total choline intakes for most people are below recommended amounts.

My Vitamin D level is 96nmol/L (range is 70 to 250) 

How did you find that formula to covert it to ngml? Thanks

Wheatwacked Veteran

Google but simplest one is gone.  That's 38 ng/ml.  Good enough for the doctors and insurance but not really for you.

nMol/L to ng/ml Calculator

 

Raquel2021 Collaborator
16 hours ago, Wheatwacked said:

Google but simplest one is gone.  That's 38 ng/ml.  Good enough for the doctors and insurance but not really for you.

nMol/L to ng/ml Calculator

 

Thank you. I just figured I had it at 60 before and now is 96 and above normal low. I basically spent the whole summer May till Sept outside with no sunscreen.  Just had a hat and sunglasses and made my vitamin  D go up. Supplements make me feel sick. I tried a few. 

Wheatwacked Veteran
(edited)

 

Pure D or a multi?

Ypur success in raising to 96 nmol/L better than most.  Find a way to maintain through the winter an bring it up another 36 nmol next summer?  200 nmol/L is where our bodies naturally set the upper limit.  

Quote

Surge of information on benefits of vitamin D   

According to McCarthy, his target range is based upon several factors:

  • A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
  • Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
  • Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

           Vitamin D deficiency 2.0: an update on the current status worldwide "For example, consumption of vitamin D-enriched eggs from hens fed with additional vitamin D3 resulted in a zero prevalence <25 nmol/L, while the control group showed an usual seasonal decline in winter with 22% being <25 nmol/L"... A safe and commonly available dose of 25 μg of vitamin D3 (1000 IU) raises 25-hydroxyvitamin D [25(OH)D] serum level by 15–25 nmol/L on average (over weeks/months)...  In general, a daily vitamin D of 800 IU appears to be sufficient to achieve a target 25(OH)D level of at least 50 nmol/L (or 20 ng/mL) in most healthy individuals, whereas 2000 IU is sufficient to achieve a level of at least 75 nmol/L (or 30 ng/mL)...  there was an increased incidence of hypercalcemia due to massive intakes of vitamin D from various food fortifications. In some cases, hypercalcemia was associated with drinking vitamin D-fortified milk, revealing a fortification of up to 232,565 IU instead of standard 400 IU/quart, and consequently, prohibition of milk fortification 

        

Vitamin D deficiency in critical illness  Chicken or the Egg?

Quote

      Vitamin D deficiency 2.0: an update on the current status worldwide  Similarly, critically ill patients have a very high prevalence of vitamin D deficiency, and low vitamin D levels are clearly associated with greater illness severity, morbidity, and mortality in both adult and pediatric intensive care unit (ICU) patients, as well as medical and surgical ICUs [23]. However, as in most other populations, the most important question remains unanswered: whether low vitamin D is an innocent bystander, simply reflecting greater disease severity, or represents an independent and modifiable risk factor amenable to rapid normalization through loading dose supplementation [24, 25].

 In general, a daily vitamin D of 800 IU appears to be sufficient to achieve a target 25(OH)D level of at least 50 nmol/L (or 20 ng/mL) in most healthy individuals, whereas 2000 IU is sufficient to achieve a level of at least 75 nmol/L (or 30 ng/mL).

Edited by Wheatwacked

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    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
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