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Marsh 1

Scarletgrrrl

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Scarletgrrrl Rookie
Scarletgrrrl
Posted

I got my results from my endoscopy a month ago now and I am still trying to work things out. I have duodenitis (inflamed duodenum) with increased intraepithelial lymphocytes. My villous crypt ratio is 2:1. (I have read the normal ratio is 4-5:1).

From my research this is called mild enteropathy celiac disease (one article even calls it a wolf in sheep's clothing). They also call it potential celiac disase or someone likely to develop it down the track. I have been virtually gluten free for about 5 years prior to the gluten challenge just having the odd thing occasionally. I struggled with the gluten challenge as my body has become so sensitive to gluten now. I am not sure if I didn't consume enough for the challenge or the disease is yet to develop.
Since the endoscopy and going gluten free, I have been diagnosed with iron deficiency anaemia. I accidentally had some gluten 3 weeks ago and since then I have had rhinitis (my nose is permanently blocked with green snot!). This was a symptom that I had during my gluten challenge. I have also started to develop an itchy rash on my knee.

S

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nvsmom Community Regular
nvsmom
Posted

You probably know more than I do about this.  :)  It looks like you have some damage, often seen as early damage in celiac disease, but not enough for the doctor to dclare it (diagnose you) celiac disease.  With the flare up of your symptoms, and signs of damage, are you planning on remaining strictly gluten-free?

psawyer Proficient
psawyer
Posted

To me, ANY amount of detectable damage to the villi is a huge red flag. I am not a doctor of anything, but I would interpret that to say that something is damaging your villi, and the most likely suspect by far is celiac disease. Celiac disease is like diabetes and pregnancy. There is no "little bit," or "mild." You are or you aren't. My two cents for what it's worth.

I was advanced Marsh 3 when diagnosed in 2000. Normal villi biopsied on a retest five years later after strictly following the gluten-free diet.

nvsmom Community Regular
nvsmom
Posted

Peter put it better than I did!  :)

Scarletgrrrl Rookie
Scarletgrrrl
Posted
  • Author

You probably know more than I do about this.   :)  It looks like you have some damage, often seen as early damage in celiac disease, but not enough for the doctor to dclare it (diagnose you) celiac disease.  With the flare up of your symptoms, and signs of damage, are you planning on remaining strictly gluten-free?

Yes I am planning on remaining strictly gluten free. I am now so sensitive to gluten and have had my share of horrible symptoms: abdominal pain, breast and back pain, hair loss, tingling in the hands and feet, the list goes on...

Scarletgrrrl Rookie
Scarletgrrrl
Posted
  • Author

To me, ANY amount of detectable damage to the villi is a huge red flag. I am not a doctor of anything, but I would interpret that to say that something is damaging your villi, and the most likely suspect by far is celiac disease. Celiac disease is like diabetes and pregnancy. There is no "little bit," or "mild." You are or you aren't. My two cents for what it's worth.

I was advanced Marsh 3 when diagnosed in 2000. Normal villi biopsied on a retest five years later after strictly following the gluten-free diet.

Thanks for your post Peter. I suspect this is celiac disease too. A friend was diagnosed in her 50s and her villi will never fully recover. I don't want that to happen to me and am taking this very seriously. I also suspect my dad and my son have it too. My dad is now in a nursing home with dementia and we are awaiting the blood results for my 4 yr old son (whose eczema is starting to look like dermatitis herpetiformis.)

  • 8 months later...
Cboogy Newbie
Cboogy
Posted

Hm, but what if all you have is elevated lymphocytes in the colon and small intestine? No anemia, no deficiencies, no villous atrophy, normal architechtural as they say, negative bloodwork on every possible antibody test, and no response after years of being gluten free ... then what? That's where I'm stuck right now. 

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Gemini Experienced
Gemini
Posted

Thanks for your post Peter. I suspect this is celiac disease too. A friend was diagnosed in her 50s and her villi will never fully recover. I don't want that to happen to me and am taking this very seriously. I also suspect my dad and my son have it too. My dad is now in a nursing home with dementia and we are awaiting the blood results for my 4 yr old son (whose eczema is starting to look like dermatitis herpetiformis.)

In reality, a person does not have to have 100% functioning,healed villi to be healthy.  There is overlap in the small intestine of areas that absorb different nutrients, meaning that if there is damage to one area that absorbs iron, there are other areas that absorb iron also. Is it optimal that you have the whole thing working well?  Sure...but it isn't necessary for health.  I was diagnosed in my mid 40's, after a whole lifetime of symptoms and I have healed well and am healthy now, with no deficiencies.

 

For the record, I would consider you a bonified Celiac.  Marsh 1 is the first stage of damage from Celiac. Having elevated lymphocytes is another big, red flag.......even though the medical profession usually won't give their blessing until you reach almost maximum damage   It's about as silly a logic as one can have.  No other disease state requires you to become that sick before they call it what it is.  Do they wait until a diabetic is in a coma before they acknowledge they have diabetes?  A big, fat no to that one!  You were lucky to catch the damage early before you go any further with it and I would stay on a strict gluten-free diet for life and stay healthy.  The anemia will go away once you do that.

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