Newly Diagnosed Marsh 3b Level

[KaCS]

Hi - Because of osteoporosis (considering use of Fosamax) & having had hiatal hernia surgery 8 years ago (I unwisely lifted a 40 lb. bird bath), an endocrinologist (via a consult request from my primary dr.) ordered tests related to Celiac.  On 1/20/26 my tTg-IgA result was >250 and a 24 hr. urine collection test identified malabsorption signs.  An EGD on 3/24/26 showed no esophagus or stomach disease but the small intestine biopsy resulted in an active Celiac Marsh 3b level based on tTg-IgA result, symptoms & biopsy findings.  I started a gluten free diet on 1/21/26, learning along the way.  Inadvertently ingested gluten a couple times by believing a restaurant & a grocery store.  I had another tTg-IgA test about 4 weeks ago & it was 218.  After going off gluten, bloating improved immensely but symptoms of fatigue, needles & pins, shooting nerves, numbness, nausea & stomach pain increased.  I don't have usual Celiac intestinal symptoms.  I meet with a dietician on 4/22/26.  I have read & researched a LOT.  I am trying to find out why symptoms are worse.  Before the diagnosis, I was off dairy for 18 mos., and I am a fairly "clean" eater related to the stomach surgery I had.  I am hoping that others may have experiences and/or information to share related to symptoms worsening after going gluten free.  I've had excellent medical care, but I am finding that the healing & management process is SO variable in actuality & on paper.  Thank you for sharing whatever you think might be helpful to me & others.  I realize I'm not a spring chicken at 67 but I pretty darn healthy otherwise.  KaCS  

[trents]

Welcome to the celiac.com community, @KaCS!

Do you still consume oats? I'm not asking if you are eating mainstream oat products vs. gluten free oats. I am asking if you are eating oats period.

[knitty kitty]

Welcome, @KaCS,

Talk to your dietician about supplementing with essential vitamins and minerals.  With such a severe Marsh score, it's important to supplement so that your damaged intestines can have the opportunity to absorb more essential nutrients needed to heal.  

Most of the essential B vitamins can't be stored for longer than a couple of months, but Thiamine can become depleted within three to eighteen days.  

Thiamine deficiency symptoms include fatigue, needles & pins, shooting nerves, numbness, nausea & abdominal pain.  Ask for an Erythrocyte Transketolace Activity Assay to check Thiamine level.  The increasingly used method to check for Thiamine deficiency is to take high doses (500 mg) of Thiamine Hydrochloride and look for health improvement in the doctor's office.  Some people have improvement within an hour.  I had improvement within twenty minutes.  Thiamine Hydrochloride can be taken in high doses because it is safe and nontoxic.  There's no upper limit.  If improvements are seen, continued 500 mg doses three times a day are recommended.  Doses can be gradually reduced as health improvement stabilizes. 

I took high doses of Thiamine Hydrochloride for several months before reducing doses.  I added other forms of Thiamine (Benfotiamine and Thiamine TTFD).  Benfotiamine has been shown to promote intestinal healing and neuropathy.  Thiamine TTFD (thiamine tetrahydrofurfuryl disulfide) is wonderful for neurological problems and has been shown to improve brain function.  It's important to take Magnesium Glycinate or Magnesium Threonate with Thiamine because they make life sustaining enzymes together.

Keep in mind that processed gluten free foods are not enriched with vitamins and minerals like gluten containing products are.  Taking supplements while on a gluten free diet has been shown to improve health and mood.

Keep us posted on your progress!

There's lots of information about vitamins in my blog.

 

[cristiana]

Welcome @KaCS!

Deficiencies can cause neurological symptoms including nerve pain.  I wonder if you have had any blood tests which show any vitamin (such as B12 and vitamin D) or mineral (such as iron) deficiencies?  Chances are, if you have borderline results or clear deficiencies, you will be deficient in other vitamins and minerals. 

Even before my diagnosis, my GP put me onto iron supplements as I was iron anemic, but it took a private nutritionist after my diagnosis to see that my D and B12 levels were causing me issues (they had been considered by the doctor GP as normal because they were borderline), and she put me onto a broad spectrum supplement which helped enormously. 

For some time after my diagnosis, and after adopting a strict gluten-free diet, I had what I would describe as a lot of 'buzzing' nerve sensations and numbness.  

For example, I remember for some months before and after adopting a gluten-free diet I would wake up with numb arms and hands, which would recover after a few seconds of waking. I was eventually diagnosed with ulnar nerve entrapment.

In addition, I had random widespread twitching such as under my eyes, or maybe a muscle in my leg - most odd.  At that time (2013) it seemed a lot of people on this forum had similar problems, so I took their advice and bought some Solgar sublingual B12 tablets and also started to take magnesium, and these issues slowly started to disappear.  

As for the nausea and stomach pain, I had the same at diagnosis and at various times it has been bad since, even after giving up gluten and following a strict gluten-free diet.  While I was still healing, certain foods were a temporary problem.   Initially I noticed that things like oats (see @trents's comment above) were an issue and in fact continued to be for several years.   I found this so odd as I ate a lot of them before my diagnosis without issue.  Thankfully, I can actually eat them again, but I think it wasn't until my TTG blood test came back as within normal levels that I could tolerate them. Lentils and peas were also painful to eat while my gut was healing, but again, no problems with them now.   If I were you, I'd keep a food diary to see if some sort of pattern is emerging.  If you find a certain food is an issue, keep away from it for a while, then reintroduce.  (NOTE: In the UK doctors recommend new coeliacs stay off oats for 6 months, and then introduce them - but make sure they are pure oats, certified gluten free, as any other type will likely contain gluten which can be acquired from other grains during the crop growing or processing)

Even now, I will still get gastritis type pain (a sore, gnawing pain in my stomach), feelings of nausea and reflux.   I have noticed that this can happen if I have consumed gluten (even small amounts due to cross-contamination) or after overindulging in rich, fatty food (particularly too much cake!). When that happens I put myself on a reflux/gastritis diet (i.e. low fat, avoid coffee/tea, citrus or tomatoes, no spicey food, no alcohol etc) and take a very short course of 20 mg omeprazole, perhaps no more than 2-3 days worth, which seems to just give my stomach a chance to recover.  You can google reflux/gastritis diets if interested.  

Lastly, just in case you have missed this, do read this thread - very useful:

 

 

[KaCS]

18 hours ago, trents said:

Welcome to the celiac.com community, @KaCS!

Do you still consume oats? I'm not asking if you are eating mainstream oat products vs. gluten free oats. I am asking if you are eating oats period.

I have intentionally consumed Purely Elizabeth. Classic Cinnamon instant oatmeal.  Probably once a week.  Other than this, I haven't intentionally consumed oats. 

[KaCS]

16 hours ago, cristiana said:

Welcome @KaCS!

Deficiencies can cause neurological symptoms including nerve pain.  I wonder if you have had any blood tests which show any vitamin (such as B12 and vitamin D) or mineral (such as iron) deficiencies?  Chances are, if you have borderline results or clear deficiencies, you will be deficient in other vitamins and minerals. 

Even before my diagnosis, my GP put me onto iron supplements as I was iron anemic, but it took a private nutritionist after my diagnosis to see that my D and B12 levels were causing me issues (they had been considered by the doctor GP as normal because they were borderline), and she put me onto a broad spectrum supplement which helped enormously. 

For some time after my diagnosis, and after adopting a strict gluten-free diet, I had what I would describe as a lot of 'buzzing' nerve sensations and numbness.  

For example, I remember for some months before and after adopting a gluten-free diet I would wake up with numb arms and hands, which would recover after a few seconds of waking. I was eventually diagnosed with ulnar nerve entrapment.

In addition, I had random widespread twitching such as under my eyes, or maybe a muscle in my leg - most odd.  At that time (2013) it seemed a lot of people on this forum had similar problems, so I took their advice and bought some Solgar sublingual B12 tablets and also started to take magnesium, and these issues slowly started to disappear.  

As for the nausea and stomach pain, I had the same at diagnosis and at various times it has been bad since, even after giving up gluten and following a strict gluten-free diet.  While I was still healing, certain foods were a temporary problem.   Initially I noticed that things like oats (see @trents's comment above) were an issue and in fact continued to be for several years.   I found this so odd as I ate a lot of them before my diagnosis without issue.  Thankfully, I can actually eat them again, but I think it wasn't until my TTG blood test came back as within normal levels that I could tolerate them. Lentils and peas were also painful to eat while my gut was healing, but again, no problems with them now.   If I were you, I'd keep a food diary to see if some sort of pattern is emerging.  If you find a certain food is an issue, keep away from it for a while, then reintroduce.  (NOTE: In the UK doctors recommend new coeliacs stay off oats for 6 months, and then introduce them - but make sure they are pure oats, certified gluten free, as any other type will likely contain gluten which can be acquired from other grains during the crop growing or processing)

Even now, I will still get gastritis type pain (a sore, gnawing pain in my stomach), feelings of nausea and reflux.   I have noticed that this can happen if I have consumed gluten (even small amounts due to cross-contamination) or after overindulging in rich, fatty food (particularly too much cake!). When that happens I put myself on a reflux/gastritis diet (i.e. low fat, avoid coffee/tea, citrus or tomatoes, no spicey food, no alcohol etc) and take a very short course of 20 mg omeprazole, perhaps no more than 2-3 days worth, which seems to just give my stomach a chance to recover.  You can google reflux/gastritis diets if interested.  

Lastly, just in case you have missed this, do read this thread - very useful:

 

 

Thank you so much for the detailed information!  I am seeing my doctor tomorrow and will discuss the vitamin / symptoms with her thoroughly.  I appreciate that you shared symptoms that you've had.  I will look at the Beginner's Guide.  This feels daunting right now and your response has lightened the load a bit.

[trents]

Some celiacs react to the oat protein "avenin" like they do the wheat protein gluten. It has a similar structure. On top of that, do you know if the Purely Elizabeth Classic Cinnamon product carries a gluten-free rating. Mainline oatmeal products can be heavily cross-contaminated with wheat/barley. 

[KaCS]

35 minutes ago, trents said:

Some celiacs react to the oat protein "avenin" like they do the wheat protein gluten. It has a similar structure. On top of that, do you know if the Purely Elizabeth Classic Cinnamon product carries a gluten-free rating. Mainline oatmeal products can be heavily cross-contaminated with wheat/barley. 

Purely Elizabeth carries a certified gluten free rating.  I think I'll take oats out of my diet and see if it helps.  

[KaCS]

16 hours ago, knitty kitty said:

Welcome, @KaCS,

Talk to your dietician about supplementing with essential vitamins and minerals.  With such a severe Marsh score, it's important to supplement so that your damaged intestines can have the opportunity to absorb more essential nutrients needed to heal.  

Most of the essential B vitamins can't be stored for longer than a couple of months, but Thiamine can become depleted within three to eighteen days.  

Thiamine deficiency symptoms include fatigue, needles & pins, shooting nerves, numbness, nausea & abdominal pain.  Ask for an Erythrocyte Transketolace Activity Assay to check Thiamine level.  The increasingly used method to check for Thiamine deficiency is to take high doses (500 mg) of Thiamine Hydrochloride and look for health improvement in the doctor's office.  Some people have improvement within an hour.  I had improvement within twenty minutes.  Thiamine Hydrochloride can be taken in high doses because it is safe and nontoxic.  There's no upper limit.  If improvements are seen, continued 500 mg doses three times a day are recommended.  Doses can be gradually reduced as health improvement stabilizes. 

I took high doses of Thiamine Hydrochloride for several months before reducing doses.  I added other forms of Thiamine (Benfotiamine and Thiamine TTFD).  Benfotiamine has been shown to promote intestinal healing and neuropathy.  Thiamine TTFD (thiamine tetrahydrofurfuryl disulfide) is wonderful for neurological problems and has been shown to improve brain function.  It's important to take Magnesium Glycinate or Magnesium Threonate with Thiamine because they make life sustaining enzymes together.

Keep in mind that processed gluten free foods are not enriched with vitamins and minerals like gluten containing products are.  Taking supplements while on a gluten free diet has been shown to improve health and mood.

Keep us posted on your progress!

There's lots of information about vitamins in my blog.

 

Thank you so much for all of this information.  I will pursue the Thiamine and vitamins conversation with my doctor tomorrow.  I really want to feel better!

[knitty kitty]

@KaCS,

Are you still avoiding dairy?  You may want to continue to eliminate it for several months until your intestinal villi  grow back.  Villi are the anemone like projections that absorb nutrients from food.  Villi also produce lactase, the enzyme that digests lactose, the sugar in dairy.  

About half of people with Celiac Disease react to Casein, the protein in dairy.  This hypersensitivity to Casein is different than milk allergy.  

Eliminating dairy and oats (and all other grains) in the beginning of the gluten free diet is beneficial.  

Keep us posted on your progress!

[cristiana]

2 hours ago, KaCS said:

Thank you so much for the detailed information!  I am seeing my doctor tomorrow and will discuss the vitamin / symptoms with her thoroughly.  I appreciate that you shared symptoms that you've had.  I will look at the Beginner's Guide.  This feels daunting right now and your response has lightened the load a bit.

I must admit I felt the same as you about the load being lightened when I came across people on this forum back in 2013 and saw that others had the same symptoms as me.  I had so many weird and wonderful symptoms that I thought something else other coeliac disease was going on.  Being a hypochondriac, I worried about them all!   It is incredible the damage that gluten and deficiencies can inflict, but also strange how symptoms vary from one coeliac to another.  Also, the speed of recovery.  Two friends that were diagnosed at the same time as me responded very quickly to the gluten-free diet, it took me longer, but I got there in the end, thankfully!

[Aretaeus Cappadocia]

23 hours ago, KaCS said:

On 1/20/26 my tTg-IgA result was >250 and a 24 hr. urine collection test identified malabsorption signs.  ...  I started a gluten free diet on 1/21/26, learning along the way.  Inadvertently ingested gluten a couple times by believing a restaurant & a grocery store.  I had another tTg-IgA test about 4 weeks ago & it was 218. 

Hi, I just wanted to comment on this aspect. If I understood correctly, your tTg-IgA went from >250 to 218 in about 7 weeks (Jan 21 to ~Mar 13) with known inadvertent gluten ingestions during that time. To my knowledge, clinicians usually wait until 3-6 months of true gluten free diet (no shade) before retesting for celiac IgA levels. I don't want to discount any of the symptoms you are seeing but it's possible that you haven't been truly gluten free long enough to start seeing real benefits. The biology of celiac is such that gluten acts less like a dose-response 1:1 situation and more like a flywheel that has momentum. It takes time for it to slow down and every glutening adds momentum to the celiac flywheel, that is, adds more time until it can slow down.

Also, much like is described in the Gluten-free 101 article, make sure you've gone through your kitchen and pantry to clean out all the leftover crumbs from your past life, rewash pans, etc, ziplock any risk items that you have to keep (eg wheat flour for the non-celiacs in your family). While doing it, maybe wear a particle mask and wash your hands for extra safety. Good luck to you!