No intestinal healing and still anaemic/low iron 3 years after diagnosis

[Juca]

Hi everyone, 

I am doing great on the gluten-free diet and my antibody tests finally normalized after 3 years. However, my repeat biopsy revealed that I am still a Marsh 3C and I am still unable to absorb any iron. Specialists assume I might never heal or, at best, might need quite a few years more for the situation to improve. 

I have tried both supplements and eating iron rich foods (even accompanied with vit.C rich foods and no dairy in the same meal). So, I am still reliant on iron infusions, which are very expensive. Frequent blood testing is expensive as well.

Is there anyone out there in the same position? Have you figured out how often you need to get the extra iron? Did it get better at a point? 

 

 

[trents]

Three things:

1. Recent studies, and there have been a number of them, show that most people who report being diligent about avoiding gluten in their diets are not as successful as they imagine. They are actually practicing a "low gluten" diet rather than a "gluten free" one. This is due to a number of factors including misleading and erroneous labeling by food and drug companies , inconsistent or uninformed food handling practice by eateries, and  inconsistencies by the Celiac Disease individual themselves. One such recent study showed that most breeches in the gluten-free diet occur on weekends when people tend to relax their standards and/or eat out more often. 

2. It may take many years for substantial villi healing to take place. I have been making a diligent effort to eat gluten-free since being diagnosed as a Celiac almost 20 years ago. But a followup endoscopy several years after initial diagnosis showed no substantial healing. Another endoscopy done less than two years ago did show that the villi were healed. This most recent endoscopy was 15-16 years after my original diagnosis and after I had been retired for about 5 years. My suspicion is that during my working years I was getting gluten contamination from the company cafeteria and from restaurants despite playing the food detective. There are always those work-related meetings that happen in restaurants or catered affairs where you do the best you can to check on things but . . . when you eat outside of your own house, you are at the mercy of others and I think that's when a lot of cross contamination happens.

3. You do not mention your age but I'm sure it takes considerably longer for villi healing to happen for those who are not young anymore, as it does for most medical problems. Have you had a followup endoscopy to check the status of your villi?

4. Have you been checked for pernicious anemia? This is a condition where B12 absorption fails because of a missing enzyme called "intrinsic factor". B12 is necessary for iron absorption by the body.

[cyclinglady]

I completely agree with Trents.  Either you are still getting gluten exposures in your diet, or you have refractory celiac disease which is very rare and I hope you do not have.  

I have healed, but I started at a Marsh Stage 3B.  I follow a pretty strict diet.  That includes NEVER eating out unless it is a dedicated 100% gluten free restaurant.  If I need to eat away from home  (and I did not bring food with me),  I shop for food at a grocery store.  A cheese stick, banana, certified gluten-free chips, and plain yogurt are my normal purchases when I am desperate.  I consume a mostly real food diet (minimal processed, like yogurt).  I am not Vegan or Vegetarian.  I consume meat, fish, eggs, and poultry at every meal.   I consume many vegetables and a little fruit.  I limit my grains not because of celiac disease, but because I am insulin resistant (I eat to my glucose meter).  

I had severe anemia when I was diagnosed.  I genetically have Thalassemia and when I developed iron-deficiency anemia and went through menopause, my body simply could not keep up with my iron needs or even supplementation.    My anemia, with iron supplements, resolved within months on the gluten-free diet.  After a few months, I ceased taking iron supplements as they were no longer necessary.  My ferritin levels increased from a 2 to 25 within two months of the gluten free diet.   Now, my ferritin is always around 55.  My hemoglobin is slightly under range, but that is due to Thalassemia.  I refused blood transfusions when my hemoglobin was below 7 prior to my diagnosis.   I was determined to find the root cause.  It was my consulting GI who caught my celiac disease diagnosis when I went for a cancer screening colonoscopy which was ordered because I had hit 50 years old.  My GP checks me for deficiencies each year.  I keep in touch with my current GI.  I do not use celiac antibodies testing anymore, because frankly, my DGP IgA was highly elevated when my repeat biopsies came back showing no active celiac disease.   Those tests were only designed to help diagnose, but not monitor celiac disease.  They can give you a false sense of how you are managing your diet.  But I understand that repeated endoscopies are invasive and costly.  

I hope that your case is not refractory.  Consider working with a GI specialist who can and does treat refractory celiac disease.  Consider consulting with a dietician who also specializes in celiac disease.  Maybe he or she can help you find the offending gluten.  Sometimes it takes a team to help you heal. 

 

 

[Jpate]

On 5/22/2020 at 12:43 PM, Juca said:

Hi everyone, 

I am doing great on the gluten-free diet and my antibody tests finally normalized after 3 years. However, my repeat biopsy revealed that I am still a Marsh 3C and I am still unable to absorb any iron. Specialists assume I might never heal or, at best, might need quite a few years more for the situation to improve. 

I have tried both supplements and eating iron rich foods (even accompanied with vit.C rich foods and no dairy in the same meal). So, I am still reliant on iron infusions, which are very expensive. Frequent blood testing is expensive as well.

Is there anyone out there in the same position? Have you figured out how often you need to get the extra iron? Did it get better at a point? 

 

 

Welcome to the club I have been in the same situation for the last 5 years. I am lucky living in the UK I have been having my treatment with the NHS and it's free. I am still having treatment after all these years and I was diagnosed with marsh 3c. Ask your doctor about B12 injection that may help you. I'm having B12 injection every 3 months for the rest of my life. Hope this will help you. 

Regards 

John 

[knitty kitty]

Hi!  Have you been checked for vitamin and mineral deficiencies?  Sometimes iron deficiency anemia is unresponsive if there is an underlying copper deficiency as well. Riboflavin, folate, B12, and pyridoxine (B6) are also needed in blood production.

Here's an article on copper deficiency symptoms....

https://www.healthline.com/nutrition/copper-deficiency-symptoms

Hope this helps!

Eat more Liver!

On 5/22/2020 at 6:43 AM, Juca said:

Hi everyone, 

I am doing great on the gluten-free diet and my antibody tests finally normalized after 3 years. However, my repeat biopsy revealed that I am still a Marsh 3C and I am still unable to absorb any iron. Specialists assume I might never heal or, at best, might need quite a few years more for the situation to improve. 

I have tried both supplements and eating iron rich foods (even accompanied with vit.C rich foods and no dairy in the same meal). So, I am still reliant on iron infusions, which are very expensive. Frequent blood testing is expensive as well.

Is there anyone out there in the same position? Have you figured out how often you need to get the extra iron? Did it get better at a point?