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Hello all,

 

I’m afraid I have a long tale, so please bear with me. I am female, 39 and I live in France. I was diagnosed with celiac disease in July 2017. My symptoms were iron-deficiency anemia (ferritin constantly at 7), chronic diarrhea with undigested food, bad abdominal pain. I had a very high anti-Ttg antibodies value, 2185.7 U/ml, positive anti-endomysium antibodies and my duodenal biopsies showed Marsh 3 villous atrophy.

 

I immediately went gluten free (very strictly, my partner did too, we replaced dishes, colander etc., cosmetics, you name it). As a result, the diarrhea was gone in 48 hours. However, this lasted for about one month, after which it came back with a vengeance. I soon realized I had other intolerances. I did an elimination diet and after about 3 months I came to the conclusion that the only foods I could eat were: most fish and 8 vegetables.

 

For the past 2 years, I have tried and tried to introduce other foods, with no success whatsoever. On the contrary, I seem to react more and more violently to smaller and smaller quantities of any type of food (meats, other vegetables, fruits, nuts, eggs, dairy, legumes, gluten-free grains etc.). Notably, I cannot tolerate oils at all, I react to 1-2 drops. It’s not an issue of fat, as I can eat large quantities of fatty fish with no problem. My reactions (horrible burning abdominal pain, diarrhea, undigested food in stool) occur 12 to 24 hours after ingestion. Intensity depends on quantity and type of food. I don’t have any other symptoms, no skin issues, no joint pains, nothing.

 

Meanwhile, 6 months after going gluten free, my antibodies had become negative (and have stayed this way ever since) and my ferritin was at 40. But my anemia was back after another 6 months. At the endoscopy I did then, after 1 year gluten-free, my villous atrophy had healed (and has not come back).

 

However, they found ulcerations in my duodenum and a weird infiltrate of PAS+ macrophages. I was suspected of Whipple’s disease (and never having had celiac in the first place), but all PCR tests came back negative. I was referred to the national center for rare diseases, where I consult with the most important immunologist in the country and another professor specialized in refractory celiac and IBDs.

 

They’ve done a zillion tests on me, repeat endoscopies etc. My blood tests are usually all OK, except for iron-deficiency anemia. They have ruled out:

- Whipple’s disease and any other infection - they did PCR tests for thousands of pathogens at a university hospital’s research center; I tried to take antibiotics anyway, but do not tolerate them at all;

- refractory celiac type 1 or 2; they did, however, do a genetic test and I do have gene HLA DQ 2.5, one copy;

- any type of cancer;

- any type of IBD;

- autoimmune enteropathy, CVID, mast-cell disorders, many weird and rare genetic diseases.

As a result, they have declared themselves “at the limits of knowledge”. They will continue to look, but they are not hopeful they will figure out what I have.

 

Meanwhile, I have been bringing my ferritin levels back up with IV iron (Venofer, then Ferinject). It works, but the problem is I react very violently to it, as if it were chemo (throwing up all night, then liquid diarrhea all day, then horrible burning pain for a week). These symptoms occur with a delay, just like with foods, after about 12 hours. I only do it when my hemoglobin goes below 10 and I feel like the living dead, about once a year.

 

I have consulted some naturopaths with no result, mainly because I cannot tolerate any of the supplements they propose, like glutamine, probiotics, digestive enzymes, herbal stuff, CBD, the usual. I have always made certain that all supplements I have tried are certified gluten-free. It is not an issue of fillers, as I have tried many supplements in pure form. Also, I actually seem to tolerate things like magnesium stearate, silicium dioxide - as well as vitamins and minerals (except for iron).

 

A few months ago, I started developing intolerances to the 8 vegetables I was still eating. As of September, the only thing I can eat is fish. Literally. Fish, unrefined sea salt and water. I have no idea how much longer I will tolerate fish for, nor if one can survive by eating only fish.

 

Seeing this, my doctors have suggested we try the treatment for refractory celiac type 1, to see what happens. We’re talking Entocort, a corticosteroid that acts locally in the gut. It’s normally for IBDs in the colon, so the capsules are gastro-resistant, which is why I open them and crunch them to get the effect in my duodenum. Unfortunately, there is no effect whatsoever so far, and they should have kicked in by now.

 

Thanks a lot for reading this - sorry it turned out such a novel. Any thoughts and replies you may have would be greatly appreciated. Especially - has anybody had or heard of a similar experience or of PAS+ macrophages detected in their duodenum?

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Hello, Corinne, welcome to the forum.  You are suffering and my heart goes out to you.  

I suggest you talk to your doctor about "refeeding syndrome".  Here's an article about it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Basically, refeeding syndrome occurs when a person tries to go back to eating carbohydrates after a period where they were not eating carbs and the body has been utilizing fat for fuel. 

In order to burn carbs for fuel, the body needs certain minerals and vitamins.  Thiamine is needed especially.  Thiamine is a water soluble B vitamin that your body can not store for very long.  Your body runs out of thiamine in 14 to 18 days without replacement.  

Since you had such severe villus atrophy, malabsorption may have been preventing thiamine absorption and contributing to a thiamine deficiency.  

You need thiamine to turn carbs into fuel.  The more carbs you eat, the more thiamine is needed.  You can quickly run out of thiamine if you're not replacing it.  The symptoms you mentioned after after the IV iron seem similar to the symptoms of insufficient thiamine mentioned in the article.

Both of the IV iron (Venofer and Ferinject) are iron containing carbohydrates, (Iron sucrose and ferric carboxymaltose). These would need thiamine to process those iron-carrying carbohydrates.   

In some diseases associated with thiamine deficiency, increased macrophage infiltration is seen (pancreas, heart, brain). 

I was very ill before diagnosis and went through this myself.  My doctors were really stupid and missed it completely.  I got a new doctor.  Thankfully, he got it right.  

Discuss this "refeeding syndrome" with your doctor.  Take a copy of the article with you (and your food journal so you can show exactly what and how much you've been eating and symptoms afterwards if you've kept one). 

Discuss this with your doctor.  I am not a doctor.  I am not diagnosing.  This is something I know about first hand. 

 I hope this helps.  Please keep us posted on your progress.  

Best wishes,

knittykitty

 

 

 

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Hello knitty kitty,

Thanks a lot for this info. I have carefully read the article, but I honestly do not think I have refeeding syndrome. When I still tolerated my 8 vegetables, in order to have a normal caloric intake, I would eat up to 2 kg of veggies a day (and about 600 g of fatty fish). That included e.g. carrots, squashes, fennel, so I could get anywhere between 30 g and 100 g of carbs per day. It is only recently that I've gone without carbs. My reactions to IV iron long pre-date my new penguin diet, as I call it.

Also, if I had thiamine malabsorption when I had villous atrophy, that was 2 years ago. Since then, my villi have healed. I periodically supplement with B vitamins and my very regular bloodwork has never showed a problem with electrolytes. My weight has been low normal but stable since my diagnosis.

But thank you anyway, your reply means a lot. I've been going out of my mind scouring the internet. I guess I do have some very rare and bizarre condition, as my doctors tell me that "c'est du jamais vu" and they are experts in their respective fields.

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Hello cyclinglady,

Thanks for the suggestion, I've been reading up on biologics myself, though I must admit the idea terrifies me.

Before Entocort, I was never on any immunosuppressive medication, because I could control my symptoms with diet only. As long as I stuck to fish + 8 veggies, I was fine, I would get symptoms only if I tried a bite of whatever other food. (Now I'm fine if I eat only fish, while even an eskimo gets the occasional handful of berries!) Plus my doctors would have preferred to diagnose me first, and then treat me :)

Foamy macrophages can show up in cases of infection. Immunosuppressors + infection = not a very good idea. It is only recently that they have completely excluded an infection and started me on Entocort as an experiment - which, apparently, is failing.

I don't know if they have a plan B. I am scheduled for a repeat upper and lower endoscopy in January, but I'm afraid my immune system will have had enough of fish by then...

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Hi knitty kitty,

I could eat: carrots, spinach, all squashes and pumpkins, zucchini, fennel, chard, celeriac and arugula. All had to be well cooked, I could have nothing raw. I usually boiled them, because I needed such large quantities. I tried steaming them, but with large batches not all would cook well and I would get sick. All veggies were cooked from fresh or frozen with no other ingredients or traces of anything (plain frozen carrots, plain frozen spinach etc.)

I've been supplementing with vitamin C because I cannot have anything raw. But since eating so many veggies, my folate levels have been through the roof. I imagine they will go down now and I will have to supplement. I tried to rotate these veggies as best I could, but it was rather difficult.

To simplify things in my first post, I did not mention that I also tolerated fairly many herbs, fresh or dried (like basil, oregano, thyme, parsley and others), as well as two herbal infusions (nettle and rooibos). I eliminated them with the rest of the plants when I was very sick at the beginning of September and felt better. I have to try to reintroduce them one by one, just in case they work, as they could help me get some vitamins and minerals, be they in small quantities. So far, I've been busy retrying the veggies, but no luck.

I've been eating mostly fatty fish, both for the calories and to balance the large amount of protein - I wouldn't want to get "lean fish starvation". I rotate mackerel, sardines and salmon. I get the occasional trout, sea bass and rarely tuna. I cannot have anything canned, even in just salt and water, it's only fresh or frozen fish with no other ingredients or traces.

Unfortunately, I do not tolerate anchovies, which are a very good source of iron. Nor can I have any shellfish or cuttlefish etc. I try to eat raw trout roes as often as I can - the only ones I can find with no other ingredient but salt. When I visit my mom in Eastern Europe I feast on carp, which I cannot find here, but that's only two weeks a year.

I either poach or roast all fish. I do not tolerate fish broth, made out of heads and all and simmered longer, though I can eat fish soup, i.e. the liquid in which the fish has simmered for a short while. It's not an issue of histamine, as I can eat lots of leftover mackerel and sardines and be just fine.

I eat the same fish now, cooked in the same ways. I just try to eat more of it now, though it's very difficult. Strangely enough, I haven't been losing weight, though on paper I get a lot less calories since no veggies.

It's been a rough few years, I've been mostly stuck at home cooking and eating and experimenting foods on myself like a mad scientist. But well, there are other things which make up for it to a certain extent. I'm self-employed, I'm a professional translator, and work from home, which makes things easier. When I was healthy, I loved travelling, which is nearly impossible to do now. But fortunately, I live in southern France, so it can often feel like being on holiday :) Also, I've been blessed with a wonderful relationship. And I do daily mindfulness meditation to try to stay sane.

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