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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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Hello again, fellow celiacs, I thought I should post an update of my status quo.

After almost two months of eating only fish, it is a wonder, but I still tolerate it. Also, my immune system has decided to give me a break and let me have beef! This is a great surprise, as I still cannot tolerate chicken, duck or lamb.

I had not retried meat since two years ago, but have decided to do it now seeing how sick I can get from just a sip of herbal tea or a teaspoon of mashed carrots. I have two hypotheses why I can tolerate beef:
1. Two years ago, my villi were not healed, hence my ability to digest meat was greatly impaired. But then isn't chicken more digestible?
2. Entocort is finally doing something. Why can I have no plants then? And why do the other meats not agree with me? As with all other foods, I reacted pretty badly from one bite of each.

Anyway, beef is good news and I am a little relieved. I was rather panicked as I had not found any references to people living exclusively on fish, but there are plenty of meat-only, and even beef-only dieters who, on top of it, claim no need to take any supplements.

I am suspicious of this. I have been tracking my nutrients with an app, which tells me I might have several deficiencies. I will rely on that, blood tests and symptoms to see what I should supplement with. I really do hope my anemia will improve - I tolerate not only beef per se, but also organ meats.

As supplements, for now I take only vitamin C, calcium and potassium, but plan on expanding pending some test results. I can take the non-toxic vitamins anytime, but would prefer not to tax my liver and kidneys unnecessarily. I am still taking Entocort, though I have to lower the dose in a few days, from 9 mg to 6 mg a day.

My weight has increased slightly, at just below 52 kg (114 lb).

My latest blood tests:
- hemoglobin 11.3, microcytic anemia still there;
- WBC, platelets, CRP, electrolytes normal;
- urea a bit high 0.59 g/l (ref. 0.19-0.49) - most likely because of the high protein diet, not much I can do about it;
- total bilirubin low 1.9 mg/l (3.0-12.0) - can't be correlated with anything else to make sense of it;
- alkaline phosphatase a bit low 39 UI/l (45-129) - maybe some deficiency, possibly zinc; will have it tested, should get better anyway after having introduced beef;
- other kidney, liver and pancreas tests OK.
These were just simple monthly tests to see how I do with the steroid. I will do some follow-up nutritional labs next week.

I hope I can at least maintain, if not add to, my current diet until the results are in from my upper and lower endoscopy scheduled in January. My GI doctor has told me they will run some more in-depth tests on my biopsies, like another intestinal lymphocyte phenotyping and a single-cell analysis on those PAS-positive macrophages in my duodenum. This may give them some leads for diagnosis and possible treatment, though after so long I find it hard to believe they will ever figure it out.

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Sounds like you have been put through the wringer! I’m sorry you haven’t felt well for so long. I had similar symptoms to yours and found I have pernicious anemia (B12).  After the third injection of B12 the stomach pain and watery stool normalized. I am unable to take vitamins because of the fiery pain in my stomach, which often results in chest pain. When I’ve been put on prednisone I feel so much better. I’m still on a primarily liquid diet of bone broth and collagen shakes, super greens and kombucha. Fish, eggs and potatoes are fine in small quantities.

My sister dealt with refractory sprue and deals with chronic pancreatitis. She  also survives on bone broth, super greens and kombucha. There are other organic ingredients that help, such as turmeric (reduces pain and inflammation), coconut oil, cloves, etc. It took my sister two years to heal from refractory sprue once she was on bone broth. My father has Crohns.......just a word of caution, every med has side affects, some are permanent. He lost 90% of his hearing on one of the meds talked about. 
 

Have you considered SIBO or gastroparesis?  I hope you get answers and you feel better soon. 

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My thoughts,  I recently had a really bad issue with my Ulcerative Colitis flaring. I could not tolerate any veggies without gas, bloat and pain for weeks, chicken was noticeably harder to digest and passed sometimes in stool.
Fish was my primary food source for a few weeks it is a softer protein and easy to break down. Beef...it had to be crockpot or preasure cooked and only certain cuts. I also found eggs to be tolerable as long as they were soft cooked with no crispy edges IE softboiled eggs, cooked low and slow in a skillet so they were still soft or my new favorite of just using egg whites and cream of tartar whipped up and baked into a meringue pie, recently started adding stevia or Swerve to it to make desserts. >.< basically a carnivore keto diet.

I honestly was blessed to make some homemade barbacoa like my grandmother used to and it sit really good. But it was made traditionally with trimmed red meat from beef cheeks, seasoned in only salt wrapped in a foil pouch and slow cooked in a crockpot with 500ml of water for 8 hours then drained the juices from the pouch and shredded. The meat has a really nice flavor with only salt and was easy to digest as long as I trimmed it and only had red meat. On a note it really depends on where you get it, my local stores had high fat versions that took hours to trim, while going to the city and buying from a supplier up there.

Now almost 2 months later I can have SMOOTH nut butters, Canned Spinach Puree, Soft Nut Cheese, Beef, Chicken, Fish, Eggs, Pork rinds without any issues. I still found other veggies, nut flours, seed flours all give me more gas/bloat and other issues. But my doctor also put me on some some medications to help with my intestinal inflammation.

Also to note, I have been on a paleo diet with low carbs, and high fat/protein for years due to me finding my intestines and specifically my Ulcerative colitis would cause issues with carbs/sugars. I later ended up with pancreas issues and had to completely avoid carbs.

To note another issue, the pancreas thing caused me to have to take digestive enzymes in ratio to what I eat before I eat it or I would be dealing with vomiting or undigested food in stool. Somethings have to be avoided like fried foods, added oils in excess, and certain oils all together IE canola, vegetable, animal based, grape seed make me vomit, and sometimes olive. Coconut and avocado are the only safe ones most of the time. Sorta found I also had to only eat food that sank in water...or it would float and vomit up later. Found many other circumstances that affected a foods edibility.

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NNowak and Ennis, thank you both for sharing your experiences and for your suggestions. You two are not having it easy either, struggling with such symptoms and figuring out what to eat to minimise them. I hope it won't take too long until you get better and can lay off the nasty meds.

I wish it were that simple as a nutritional deficiency. So far, the only nutrient I have trouble absorbing seems to be iron. According to my doctor, this is very likely because iron is absorbed in the duodenum, where I have those large ulcerations and that mysterious infiltrate of PAS+ macrophages. Finding their cause seems to be the key, but it's been very complicated, as the most common diseases where they appear have been excluded. I'm not sure SIBO or gastroparesis would cause such anomalies in the gut or such severe food intolerances. Also, my villi are completely healed, so this does not look like refractory sprue at all.

As for meds, I've been trying to avoid them as much as possible, but as I am currently down to two foods, I don't have much choice. I'm not sure I would take prednisone though, I've been hearing such horror stories about it, nor if my doctors would actually put me on it without at least knowing what I have or if my life were not in immediate ar at least more obvious danger.

The weird thing is that I have no digestive symptoms if I only eat what I tolerate, which right now is fish and beef. I'm not sure it's an issue of digestibility, I'm fine if I don't boil beef to oblivion and I can have it roasted too. I have no issues with digesting fat. On the contrary, I choose the fattiest cuts and can have tallow by the spoonful.

It seems clear to me that when I get symptoms it is my immune system reacting to foods, because I get those reactions from very very small quantities, like a teaspoon, always with a delay of 12-24 hours. Among the foods that are simply the devil for me: vegetable oils, rice, eggs including the yolk (soft or hard-boiled, hen or quail), dairy (ghee too, goat too), bananas, avocadoes, coconut. All are foods I had in large quantities a few months before and after going gluten free.

Unfortunately, natural anti-inflammatories like turmeric, ginger, cloves, nigella, quercetin are out of the question, as they cause very bad reactions, as do all fermented foods and probiotics. I tried betaine Hcl and digestive enzymes, but was doubled up in pain even at a quarter dose...

Hopefully some answers will come next year. Thanks again for your support and have a good week ahead.

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Hi Corrine,

They make these iron fish to put in cooking water.  It's a way to add a small amount of iron to your diet without taking a pill.  Maybe it would work for you and not make you sick.

https://www.amazon.com/Lucky-Iron-Fish-Natural-Source/dp/B01LX5S5FP/ref=cm_cr_arp_d_product_top?ie=UTF8

I don't eat canola oil or regular vegetable oils myself.  Most vegetable oils are blends that include soy oil.  And soy is not my friend.  Canola oil is just plain nasty stuff.

I hope you feel better soon.

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That's a great suggestion, GFinDC! I was thinking of buying an iron skillet now that I can eat meat, but the lucky fish would actually work better for making broth.

As for oils, I have always tried organic and extra-virgin versions, not mixed with anything else. Have tried so far olive, coconut, avocado, sunflower, rapeseed, linseed, camelina, hemp seed and the more exotic nigella and perilla. I suppose there are the nut oils plus some other seed oils left, but I'm not keen on trying them soon.

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An update to this post. I passed an upper and lower endoscopy in January. All clear in the colon. There is very good news regarding my duodenum. Apparently the ulcerations I had have mostly healed, only one is left. Microscopically, those strange PAS+ macrophages are significantly fewer too. My doctors' conclusion is that Entocort works. They want me to continue taking it at low dose until July, then switch to hydrocortisone for another 6 months.

I am reluctant to do this, take steroids for such a long time. I might take the Entocort since it does not give me any side effects, but hydrocortisone does have systemic effects. Moreover, I am not so sure my healing is due to the steroid. This is because I still cannot eat any other foods but fish and beef and my reactions to plants are really very bad. Also, I am still borderline anemic and in order to keep my ferritin in the low normal range I have to eat like 2 pounds of beef a day. I have organ meats every day for breakfast. I believe if someone with no iron-metabolism issues had so much meat as I do, they would have iron overload. My doctors say there may be a lag between the mucosa healing and clinical improvement and in time I may get back some foods and my ability to absorb iron. However, this is only speculation on their part; they are not certain at all what is going on.

I have no deficiencies based on regular bloodwork, but I have been supplementing, mostly preventatively. The trouble is that I have started developing intolerances to some of my vitamins - I believe it's not to the vitamins per se but to the fillers, although they are minimal and among the most benign (microcrystalline cellulose, silicon dioxide, magnesium stearate). All my vitamins are certified gluten free and also dairy, soy, egg, nut and yeast free.

For some time I have developed an extra-digestive symptom. It is mild, it comes and goes, but it's there all right. The left side of my body goes a little numb, as if I lost feeling in the skin - my face, my shoulder, arm and hand, my leg, even the left side of my belly. I suspected a vitamin or mineral deficiency, but after extensive bloodwork, all my levels are either fine or excellent. My only issue seems to be with iron, but I've been severely anemic and never had this numbness. I'm starting to fear it is the beginning of MS or something. I'll monitor it to see if it seems triggered by anything, but so far it has seemed random to me.

In short, things seem at the same time better and worse.

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This us a really long thread so forgive me if I missed it but have you been seen by a neurologist?

There are neurological disorders that sometimes have more prominent GI symptoms when the neurological issues are the primary issue. Also, do you have anxiety or other psychological issues? 

Also it sounds like they ruled out whipple disease, did they actually do the PCR test to confirm that?

Generally speaking if you have PAS+ Macrophages a PCR blood test should be done as a confirmation. If you have whipple's disease you would need antibiotic treatment for a year or more to fix the problem. 

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Thanks for your reply, Fenrir. No, I haven't been seen by a neurologist, that's an interesting thought. So far I have seen many gastroenterologists and internists specialized in infectiology, immunology, mast-cell disorders, hematology and cancer, but no neurologists. I have never had any neurological symptoms until recently. Nor anxiety nor other psychological issues. On the contrary, everyone says I'm doing really well morale-wise, considering.

Could you please specify what neurological diseases could give more prominent GI issues than anything else?

Re: Whipple's disease, it was definitely ruled out by negative PCR tests on: blood, saliva, stool and duodenal biopsies. These tests were repeated at several months interval and came back still negative. I tried taking the antibiotic anyway, but got immensely sick from only half a pill.

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Ataxia,  I ended up with gluten ataxia and for me it exposures caused numbing of the extremities, damaged the nerves to my pancreas and digestive system, some brain damage and would have other motor control issues randomly after a exposure.

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Corinne,

That’s great about your scopes!  Play it by ear with the steroids - they can be incredibly effective. As far as the vitamins and labs, vitamins can be exceptionally irritating for someone with GI issues and the labs measure only the levels in your blood, rather than the levels available to your body. Methylation is required to absorb vitamins and nutrients (research MTHFR). To measure our iron, we get tested for ferritin, iron, TS%, and transferrin. To correctly measure B12 and Folate levels you need your MMA, homocysteine, and sometimes reticulocyte levels run at the same time - after no supplements for 2 weeks. A deficiency in the B’s will cause neurological symptoms. 
 

Do you have any functional medicine practitioners near you?  You must get to the bottom of this, and that is their specialty. A stool test will be very helpful and give many clues that can be used alongside existing tests. They steer toward natural healing, but can also prescribe drugs if necessary. Have you tried bone broth?  It WILL heal your guts. Look at histamine intolerance to see if that correlates with any of the foods that bother you. Oftentimes when our digestive system if off, it’s because the bacteria for digestion isn’t balanced or is nonexistent. This will cause intolerances. Another one is lectin. Restrictive diets are meant to be very temporary while we heal, but you need to know what you’re healing and how to heal. Long term avoidance of foods and extreme restrictions are not healthy and we become orthorexic. This is why it’s important for you to get answers and move forward toward health. 
 

In my case, it took my functional medicine doctor less than 2 months to diagnose me when 2 internists and 2 GI’s in 3 years failed. I’ll know the plan of care next week. 
 

Thanks for the update!! Feel better soon. 

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Ennis, thanks for replying. It is rather unlikely that I get any gluten exposures. My home is gluten free. I only eat fresh fish and fresh beef, which I cook myself with only unrefined sea salt (no additives). My cosmetics are gluten free. I do not lick stamps or envelopes and stay well away from bakeries and pizza places :)

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Thank you for your advice, NNowak. I have consulted a few local functional medicine practitioners, but they were unable to help me, mostly because I could not tolerate any of the classic supplements they recommended. They did not really know what I had despite running some tests and frankly my doctors did a lot more in-depth tests, including for nutritional markers and other possible infections. I am sure my flora is out of whack, but I think this would sort itself out if the root cause were found and treated.

Unfortunately, I do not tolerate bone broth. It is not an issue of histamine, because I can have leftover mackerel and sardines in great quantities with absolutely no symptoms. I tolerate beef stock just fine though, so I load up on that. No lectins in my fish-and-beef-only diet :)

I know it is not healthy to be on a restrictive diet for a long time. I will be trying to explore what options I have left, but they are getting rather sparse to be frank. Well, as one of my less empathetic doctors was saying, even if there is nothing to be done, scientifically it will be interesting to see how my condition evolves :) (I did retort that it may be interesting to him, but I'm sure he wouldn't want to trade places with me.)

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On 10/20/2019 at 12:08 PM, Corinne D. said:

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?

 

I had the same thing happen to me. I literally ate 5 things for 4 years. Plain chicken, beef, potatoes, rice and avocado.  No seasonings except salt and butter. Every time I tried to eat anything else I reacted badly..with oil I could only eat animal based oil.

Turned out I had lyme disease and I think what's called mast cell activation syndrome.  Also am low thyroid and take dessicated thyroid.  I also needed weekly b12 injections 

Took 4 years of antibiotics and 18 months of herbals to get better. My youngest sister still has an active lyme infection and eats low FODMAP.  I can eat a lot more things now but anything acidic and most fruit I still cannot tolerate. 

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Hi Sue, thanks a lot for your reply. My tests were negative for Spirochetes and any other infection. I've been wondering if they could possibly have missed Borrelia or another intracellular pathogen that may be colonizing those PAS+ macrophages - that's what Whipple's bacteria does. But I am reluctant to do a long-term empirical trial of the antibiotic, as it makes me so very ill. I know there's supposed to be a die-off period or whatever, but without a control marker or something, I would not know how I stand.

Also, the ulcerations and macrophages in my duodenum seem to be clearing. Shouldn't the bacteria thrive and my condition worsen on steroids, which suppress my immune system? Plus, would the bacteria be so keen on certain foods? I never have symptoms when I eat just fish and beef, on the contrary, I am doing rather well.

The only ray of hope I have in this infection hypothesis is that I have been reading about people who put their Lyme into remission with a meat-only diet. I haven't read of any who got plants back :(, though that may be their choice, I'm not sure. I certainly would not want to keep my current diet forever, I don't even like fish and beef! I want my broccoli back! :) Actually, when my doctor told me my duodenum seems to be healing, my gut feeling was that it's not because of the steroids, but because I don't eat plants anymore. But, of course, I have no science to back up this intuition.

Sue, could you please tell me if antibiotics made you ill in the beginning, how ill and for how long? Thanks a lot for your input.

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I actually didn't know I had lyme for 2 years while I ate that very simple diet..it just kept me very symptom free. I kept looking for answers and very luckily tested positive for lyme. The standard tests are not accurate.  My sister did armin labs to get positive results (sent to Germany) and many people I know from a lyme group send samples there due to the unreliability of the standard tests. It's not just one strain of borriela..it could be a few plus coinfections such as babeisa, rikasetta etc. They do love certain food for sure. Steroids are definitely contraindicated. 

Taking antibiotics can cause what's called a "herxaheimer reaction " it's where the bacteria die off and you can feel pretty crappy.

In 2011 I started taking biaxin and doxycycline.  I don't remember feeling too terrible.  I had to see a lyme literate medical dr. ((Llmd) treatment went on for 3-4 years and switched out different antibiotics.  Then I started taking different herbals for about 18 months. Everyone is different and not the same thing works on everyone Bacteria can change and hide in different parts of the body. In my and my sister's case we've had it for 25+ years before it started causing problems.  

There is a particular tick that bites you I believe it's the lone star tick and can give you a red meat allergy. 

Honestly I grew up a vegetarian and had only eaten chicken but with so few options I started eating beef. 

Thankfully things worked and in 2016 I finally felt normal again...I can't say the same for my sister, she is still getting treatment but does feel much better.

They call lyme the great imitator because it can mimic so many diseases

The problem with not treating it at all is it crosses the blood brain barrier and can cause neuro lyme or neurological symptoms. 

Here is  a checklist 

https://lymediseaseassociation.org     PDF Web results This list is provided by Joseph Burrascano, MD .

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Thank you so much for all this info, Sue. I had negative PCR tests (bacterial DNA search) on duodenal biopsies. Also, on a blood immunophenotyping my NK CD57 lymphocytes were in the normal range, not depressed at all. Although I react badly to antibiotics, steroids cause me no issues whatsoever, if anything they may actually help.

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Interesting. ..and puzzling..I asked my sister if she has any ideas. She is  a medical transcriptionist for a hospital here in Canada and sees alot of interesting diagnosis.  Will let you know if she comes up with anything 

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