Nutrient deficiencies despite normal MARSH and strict gluten-free diet

[Natalia Revelo]

TLDR: Despite following a very strict gluten-free diet for 15 years, I have dealt with multiple physical and mental health issues for years, which improved with supplements. My gastro doesn't provide any solution on how to improve nutrient absorption because my MARSH is normal.

Dear all,

Sorry for the long post but I really need help.

I was diagnosed 15 years ago with very severe symptoms (weight loss, tiredness, diarrhea, fainting, hair loss, numbness in hands and feet, anxiety). Since then I have followed a very strict gluten free diet. With time I became extremely sensitive and just a few normal bread crumbs laying on the table while I eat can make me sick if I visit someone. At home my husband and child eat gluten free because I can definitely not have gluten at home. Despite physical improvements after going gluten free, my life as training as a scientist was marked by panic attacks, severe anxiety and depression while trying to obtain my PhD and working as a postdoc. 7 years ago I started to have mini burnouts, fibromyalgia-like symptoms (e.g. unbearable pain in joints and muscles) and not being able to perform at my job. 5 years ago while being pregnant my ferritin levels were practically zero and after delivering my child, my body completely collapsed. I could not walk for the first 2 years postpartum due to severe pelvic floor issues, diastasis, bladder pain and fatigue, which led to me not able to work and getting a massive burnout. Unfortunately my GP was very dismissive of all my symptoms. Eventually I was diagnosed with osteoporosis and this led me to conclude that I have been going through nutrient deficiencies for years, if not decades. With the help of an orthomolecular dietitian I started taking supplements and my pelvic floor and diastasis improved a lot (I think my body was unable to produce collagen for tissue strength) and my burnout started to improve (it seems my brain could not work due to lack of nutrients). My gastroenterologist is too busy to take me seriously, and he doesn't believe my deficiencies are real because he doesn't see it on paper (despite me having low erythrocyte counts and low ferritin). I ended up visiting a functional doctors and she could see deficiencies in magnesium, copper, omega-3, iodine, sodium and markers of inflammation and my microbiota is very imbalanced. She also found that I am allergic to milk protein and eggs and those were giving me IBS symptoms, plus there is a FODMAP group making me sick but haven't found out which. The costs of the supplements I get from the functional doctor and the tests she does are very expensive and I have to pay out of my own pocket. It's very expensive but I'm finally getting stronger and I feel like I have a completely different brain, no anxiety or depression, which is amazing after decades of feeling miserable. I convinced the gastro to check my MARSH score and while in the gastroscopy they did see scar tissue in my duodenum, the histological exam shows no damage in the MARSH score. Therefore, my gastro says I'm fine, but I'm obviously not fine. My question is if anyone has been in this situation, and how can I move forward. I suspect that the inflammation caused by milk and egg could have contributed to poor absortion. The functional doctor gave me iron infusions and my ferritine levels went up and I felt amazing, but after a few months the levels go down again. Somehow I cannot keep the iron in my body. I want to know if there is any possibility of healing my gut. The functional doctor is giving me herb supplements that heal the gut, and I tried taking glutamine but it burns my bladder (I have intersticial cystitis). I really need to go back to work, but first I need my body to have steady health and anergy. 

Thanks for any help! 

[knitty kitty]

Welcome to the forum, @Natalia Revelo!

Yes, I've been in a similar situation.  You can read about my journey in my blog here.

I found most doctors and others do not pay much attention to vitamins.  Herbal supplements can be helpful, but they can't help as much as supplementing with vitamins.  You're not deficient in herbs, you're deficient in essential nutrients.

Vitamins are chemical compounds that our bodies cannot make.  The body must absorb theses essential vitamins from what we consume.  The Gluten Free diet can be low in these vitamins.  Gluten free processed facsimile foods are usually not fortified nor enriched with vitamins to replace those lost in processing like gluten containing foods are required to do.  Malabsorption of celiac disease can cause deficiencies in these essential vitamins as well.  Correction of nutritional deficiencies is essential.  Doctors are not required to complete many hours of nutritional education (twenty hours compared to seven years in medical schools funded by big pharma companies).  

There are nine water soluble vitamins, the eight B vitamins and Vitamin C, four fat soluble vitamins, A, D, E and K.  There are about a dozen trace minerals heeded, too.  Without these, our bodies' health slowly deteriorates.  

Iron deficiency requires not only iron, but the eight essential B vitamins, and Vitamin C to make red blood cells.  The B vitamins and magnesium and other trace minerals like boron are needed to build the bone matrix.  Vitamin D is needed to regulate the immune system, make hormones and build bones and healthy joints.  Vitamin D helps with depression.

The eight essential B vitamins are needed for brain function.  Deficiency in Thiamine B 1 and the other B vitamins can cause weight loss, anorexia, depression, as well as anxiety and panic attacks.  

I suffered through the same symptoms because my doctors did not recognize nutritional deficiencies.  I had studied nutrition before switching to Microbiology at university, because I wanted to find out what those vitamins were doing inside the body.  They are instrumental in repairing and healing our bodies.  They are necessary for proper brain function.  Nutritional deficiencies develop over time and our health declines on a sliding scale as our vitamin stores are depleted and not restocked.  Nutritional deficiencies can drag on for years.  

Blood tests for nutritional deficiencies in the B vitamins are notoriously inaccurate.  The best way to see if you're deficient is to take B vitamins and look for health improvements.  High dose thiamine can help immensely.  Mitochondria die if there's insufficient thiamine, adding to poor health.  Thiamine Mononitrate is frequently used in vitamin supplements because it won't deteriorate in a jar on a shelf, Thiamine Mononitrate is shelf stable, and is as unreactive in the body as in a jar on a shelf.  Other forms of thiamine are easier for our bodies to utilize.  Benfotiamine promotes intestinal healing.  The form of thiamine called TTFD (tetrahydrofurfuryl disulfide) improves brain function, mental health problems, and therefore body function.  

Celiac disease greatly affects ones ability to absorb essential nutrients.  Correction of nutritional deficiencies quickly is important because, well, we've seen how bad our health can get if deficiencies are allowed to drag on for years.  We cannot eat sufficient food to correct  nutritional deficiencies.  Supplementation with essential vitamins and minerals is required.    

[Scott Adams]

Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.