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I was diagnosed with celiac and have been gluten free since 2012.  It took a year or two to figure out what that really meant. Then another couple of years to figure out no restaurants, no gluten in the house, etc, as I am extremely sensitive.  Now, I only occasionally have issues if I have to travel, especially if I cannot take my RV or if I am around the grandkids who are young and very gluten covered.  After continued problems, I had allergy blood work over a year ago and found I am allergic to avocados, lemons, tomatoes, shrimp, and eggs.  So more creative cooking and dietary restrictions.  It seems I also have mast cell issues, which contribute to inflammation and reactions.  My problem is this - despite careful dietary planning, I continue to struggle with vitamin and electrolyte deficiencies.  My potassium drops low and this makes me feel like I am going to die.  After 6-9 month of terrible joint and muscle pain, we discovered I am very deficient in Vitamin D.  Here is my question - is it possible that the small intestine was damaged to the point where I just can no longer absorb vitamins?  Could the years of undiagnosed celiac have created vitamin absorption issues long after I have been gluten free and even though I am almost 100% certain I get zero explosure?  I was diagnosed late - for many years my only symptoms were odd blood work, neurological and psychiatric symptoms, and pernicious anemia.  Only for about a year prior to diagnosis did I have any symptoms that involved gastro systems.  Anyone else have continued issues absorbing nutrients even after years of being gluten free?

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We seem to have similar stories.  I was having lingering issues after a hidden gluten exposure, the flu, a cold and a tooth infection.  I developed chronic hives that finally ended after six months.  I had new GERD-like symptoms that did not resolve. My GI kept suggesting a repeat endoscopy, but I resisted.  I even went on the Fasano diet.  I was going crazy trying to figure out how gluten was getting into my diet.  Like you, I travel in an RV, do not eat out except at 100% gluten free restaurants and eat very few processed foods.  

Finally, I had the endoscopy done.  My villi had healed, but I had a new diagnosis, Chronic Autoimmune Gastritis.  It is not treatable until I become deficient in B-12 or iron.  I am hoping an autoimmune diet might help it.  

I would encourage a repeat endoscopy.  What I learned is not everything is due to a gluten exposure.  I was in fact doing a great job at avoiding gluten.  

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4 hours ago, mcbphd1 said:

I was diagnosed with celiac and have been gluten free since 2012.  It took a year or two to figure out what that really meant. Then another couple of years to figure out no restaurants, no gluten in the house, etc, as I am extremely sensitive.  Now, I only occasionally have issues if I have to travel, especially if I cannot take my RV or if I am around the grandkids who are young and very gluten covered.  After continued problems, I had allergy blood work over a year ago and found I am allergic to avocados, lemons, tomatoes, shrimp, and eggs.  So more creative cooking and dietary restrictions.  It seems I also have mast cell issues, which contribute to inflammation and reactions.  My problem is this - despite careful dietary planning, I continue to struggle with vitamin and electrolyte deficiencies.  My potassium drops low and this makes me feel like I am going to die.  After 6-9 month of terrible joint and muscle pain, we discovered I am very deficient in Vitamin D.  Here is my question - is it possible that the small intestine was damaged to the point where I just can no longer absorb vitamins?  Could the years of undiagnosed celiac have created vitamin absorption issues long after I have been gluten free and even though I am almost 100% certain I get zero explosure?  I was diagnosed late - for many years my only symptoms were odd blood work, neurological and psychiatric symptoms, and pernicious anemia.  Only for about a year prior to diagnosis did I have any symptoms that involved gastro systems.  Anyone else have continued issues absorbing nutrients even after years of being gluten free?

Hello, sorry to hear you're having ongoing challenges.  

Some Celiacs do take longer to heal and because you're having problems with mast cell activation syndrome, you may not be recovering as quickly as you would like.

Correcting your vitamin D deficiency will help stabilize those pesky mast cells.  Do get your vitamin D level up to 75 nmol/l or above. 

Stick to a low histamine diet.... no fermented or pickled foods, no vinegar, no sulfites or sulfur rich foods (wines, shellfish and shrimp, eggs, and preservatives), no cured meats, no dairy, and no citrus.  These are all things that trigger those mast cells.

Keeping a food journal is really helpful in identifying problematic foods.  

Try the Autoimmune Paleo Protocol diet.  It is wonderful in calming down your over reacting system.  It may sound extremely restrictive, but you won't stay on it forever.  Just meat and vegetables.  No legumes, no dairy, no nightshades, no processed foods. After a few months on the AIP diet you can try expanding your diet one food at a time once a week.  Keep that food journal! 

Do consider vitamin and mineral supplementation while you're still healing.  Celiacs often have problems absorbing fat based vitamins (vitamins A, D, E and K).  While you're healing, you need extra B vitamins. The nine B vitamins are water soluble and so are lost quickly if you have digestive upsets.  Some Celiacs have a Mthfr genetic mutation and need to take the methylated versions of the B vitamins.  I take Thorne Research - Methyl-Guard Plus.  

I understand what you're going through.  I've been through it myself, the vitamin D deficiency, the mast cell activation syndrome, the Mthfr gene mutation requiring methylated B vitamins.  I found the AIP diet and the low histamine diet to be tremendously helpful.  

Do talk to your doctor and nutritionist about diet changes and vitamin supplementation.  (And to rule out physical problems like Cycling Lady's.)

Hope this helps!

 

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Yes, I've had problems with vitamin D levels for 10 years.  My doctor just recently told me they are finally up to 58 so I can stop taking the 50K pills every week.  But I will continue the 1000 IU pills daily.

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18 hours ago, mcbphd1 said:

I was diagnosed late - for many years my only symptoms were odd blood work, neurological and psychiatric symptoms, and pernicious anemia

18 hours ago, mcbphd1 said:

 My potassium drops low and this makes me feel like I am going to die.  After 6-9 month of terrible joint and muscle pain, we discovered I am very deficient in Vitamin D.

mcphd1,

Let me first say I agree with what Knitty Kitty said....

This is about your pernicious anemia ...it is a clue.

Here is a nice overview on the history of PA ...I learned a few things myself.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2376267/

PA can develop when our body can no longer make Intrinsic Factor or IF.

I want to quote from their history of PA recently learned.

quoting

"Understanding of the pathogenesis of pernicious anaemia increased over subsequent decades. It had long been known that the disease was associated with defects in the gastrointestinal tract: patients suffered from chronic gastritis and lack of acid secretion (achlorhydria). Indeed, dilute hydrochloric acid was at one time used in the management of pernicious anaemia. It is now known that transport of physiological amounts of vitamin B12 depends on the combined actions of gastric, ileal and pancreatic components."

because our bodies ability to make stomach acid and IF has been impaired our IF is limiting our ability to convert B-12 into an absorbable form.

And why taking a Methy form or as sublingual is important for those who might have low stomach acid ...going un/misdiagnosed.

see also this newer research on current perspectives in PA research/treatment entitled

"Pernicious anemia: New insights from a gastroenterological point of view".

Here is the link to the abstract https://www.ncbi.nlm.nih.gov/pubmed/19891010

It is traditionally treated as "chicken and egg" scenario ...meaning which one came first ...low B-12 levels or atrophic gastritis or gastritis's etc...which can effect IF production.

but newer research confirms the atropic gastritis happens first and thus low stomach acid limits our ability to absorb B-12 properly....remember our bodies IF responsible for B-12 absorption happens in the stomach.

quoting the abstract

"Pernicious anemia (PA) is a macrocytic anemia that is caused by vitamin B(12) deficiency, as a result of intrinsic factor deficiency. PA is associated with atrophic body gastritis (ABG), whose diagnosis is based on histological confirmation of gastric body atrophy. ...(but) PA is the end-stage of ABG."

Meaning the atrophic gastritis comes first then then the deficiency of IF/B-12 results from the atrophic gastritis.

this can also explain your low Vitamin D levels.  For the Potassium deficiency take some Magnesium Glycinate ....Magnesium and Potassium are twin deficiencies like IF/B-12 they are commonly low together.

I hope this is not too long but I had a lot to explain in a few paragraphs.

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

Posterboy,

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4 hours ago, mcbphd1 said:

It is such a difficult risk/benefit for me to have medical procedures like an endoscopy.  I have so much trouble with anesthesia of any kind. 

Anesthesia used during endoscopy, surgery or dental procedures contains nitrous oxide.  Nitrous oxide combines with the cobalt in B12 (Cobalamin) in a way that's irreversible.  The nitrous oxide combines permanently, leaving you deficient in B12.  If you have low stores of B12, deficiency symptoms may not appear for days to weeks later when the B12 stores are exhausted.  This time delay can prevent recognition of the actual cause and delay the remedy.  

Be sure to tell your anesthesiologist and doctor you're prone to B12 deficiency and request vitamin B12 shots before and after procedures involving anesthesia.  

This has happened to me! It's very scary to be severely deficient in B12 and suffer B12 deficiency related problems such as psychiatric problems (B12 deficiency dementia, depression) and physical problems (fatigue, anemia, nerve damage pain). 

Here's some articles from National Institute of Health about it....

https://www.ncbi.nlm.nih.gov/pubmed/8250714

https://www.ncbi.nlm.nih.gov/pubmed/10584542

https://www.ncbi.nlm.nih.gov/pubmed/3374544

With Intrinsic Factor problems like PosterBoy mentioned,  low dose B12 supplementation all the time might be a good idea.  

Hope this helps connect the dots

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Based on when I had weird symptoms in my first year at college at age 17, I could have had Celiac's since then. I was not diagnosed until age 58.  And I do have some ongoing issues that one by one we are figuring out they are mostly related to vitamin deficiencies.  Although I am taking several thousand IU of D3 supplements, my D was still on the low end of the range.  The lastest greatest discovery as of March of this year was that adding K2 did wonders for me.  K2 helps you absorb the D3.  In 2 weeks of adding the K2, by chronic asthma that no specialist could help after years of going to them, suddenly disappeared. The only time now that I have have had to take my albuterol inhaler was after trimming some big pine trees and I got huge lung fulls of the pollen and dust.  But every night, no asthma. I also feel more energy and surprise myself and others with how much longer I can keep going as compared to before.  So you want the D3 form for the D, and K2 MK7 is what I take.

Another consideration is low stomach acid.  Stomach acid is necessary to absorb several vitamins, D and Calcium for example. As we age, our stomach acid goes down.  Many older people find themselves with acid reflux or scratchy throat, when it is NOT due to too much stomach acid, but most always from TOO LITTLE.  Prior to discovering the K2 connection, I had been sipping a teaspoon of apple cider vinegar (organic unfiltered) just prior to meals with protein (the acid is not as necessary for a meal of veggies/salad for example), and did notice some improvement on the acid reflux.  I may have also been getting improvement on the D absorbtion, but I added the K2 right after that, and that is when things really seemed to kick in.

Good luck.

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On 6/6/2019 at 10:54 PM, mcbphd1 said:

Anyone else have continued issues absorbing nutrients even after years of being gluten free? 

mcbphd1,

B-Vitamins can be low for several years if you don't supplement I have found.

see this research about this topic entitled "Evidence of poor vitamin status in coeliac patients on a gluten‐free diet for 10 years"

Here is the link to the research

https://onlinelibrary.wiley.com/doi/full/10.1046/j.1365-2036.2002.01283.x

I found taking B-complex and Magnesium Citrate with meals and Magnesium Glycinate at night and catching up on my Vitamin D  helped me tremendously.

I wrote a posterboy blog post about why supplementing made sense to me  ....maybe it will help you.

Good luck on your continued  journey but I found supplementing helped me....

I also find that what Beverage said makes sense to me ...when we get low in stomach acid ...we often get low in Vitamins and Minerals....it is not the only cause ...other things can cause villous atrophy and vitamin deficiencies but I found it helped me.

Here are other things that might help you to look into sometime.

https://www.verywellhealth.com/villous-atrophy-562583

I also had trouble taking Losartan causing villous atrophy. ..I believe in my case at least.

And if that isn't bad enough for Losartan there is current recall on Losartan ...I was lucky to get off it when I did.

https://www.usatoday.com/story/news/health/2019/06/13/losartan-recalled-teva-removes-41-lots-blood-pressure-drug/1446724001/

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

Posterboy,

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