Corinne D.

I suppose it has to do with how celiac specifically manifests in my body. If you browse this forum, you will notice that a lot of us have intolerances to various other foods apart from gluten - of course, not everyone has the same or as many intolerances as others. However, this it by no means a rule - there are certainly celiacs who can have all the foods in the world except for gluten. I see no reason why anyone should abstain from any food if they can have it with no issues.

When I was still able to have coconut milk, I would choose one with only coconut and water as ingredients and make sure there was no mention of gluten traces. Being very sensitive to all sorts of things, I would never buy one with additives like carrageenan or guar gum. None of the products I chose were certified gluten-free and I never had problems with those.

I am not sure what brands are available where you live. I'm in France and the brands I could find here were either Grace, Ayam or Thai Kitchen. Not all versions of these brands, however, have no additives so I'd make sure and check the ingredients.

For calories, you can up your fat intake - choose fattier cuts of meat. Also, olive oil, coconut oil, coconut milk and avocadoes are healthy and high calorie.

Yes, first I had to fast for at least six hours before the MRI. Some protocols may have you on a low-residue diet for a few days before. About one hour before I had to drink some laxative to completely empty the small bowel, but a lot less than the amount for a colonoscopy, maybe like half. They gave me an IV antispasmodic (glucagon) (to slow down the peristalsis caused by the laxative, so that they could actually see the intestine and take pictures) and halfway through the MRI the standard contrast agent, gadolinium. The MRI itself was OK, I was on my belly with my head outside of the tube, so no claustrophobia but the noise was still there alright. Just make sure your kidney tests are fine and drink lots of water afterwards to eliminate the IV products.

Hi blurryface, I had a small bowel MRI, because I had ulcerations in my duodenum and my doctors wanted to see if they were also present in the jejeunum - the part of the small bowel beyond the reach of endoscopy. It usually shows any structural abnormalities in the intestine, lesions, ulcerations, and yes, it is usually done to check for inflammatory diseases like Crohn's, but can also be used for celiac disease complications.

Hi JD, I did the videocapsule endoscopy. The advantange is that it is less invasive than the traditional version, there is no anesthesia and it goes through the whole length of the small intestine. With the traditional one they can only go as far as the duodenum. The downside is that they cannot take biopsies, unlike with the traditional one. So they can see if there is villous atrophy, but not if there is microscopic damage and they cannot quantify the lymphocytes infiltrating the lamina propria. Seeing the extent and type of damage one has is a good reference point to check how healing comes along in time. Another downside to the pill camera is that there is a more substantial preparation involved than mere fasting: you have to drink some laxative. But it's like half the amount you would drink for a colonoscopy. Protocols vary in terms of what they allow you to eat a few days/the day before.

The risk of the pill getting stuck is really minimal, I wouldn't worry about that.

Hi Stephanie. Dermatitis herpetiformis is a form of celiac disease. Apparently, celiacs with DH may not have elevated serum antibodies, but if the skin biopsy is positive, there is no room for doubt. You should most certainly go gluten free as soon as possible. And very strictly too, avoiding all cross-contamination. Be sure to check the DH section of this forum for tips on a strict gluten-free diet.

Hi Kate, I found a no-filler multi from Pure Vitamin Club. Contains most vitamins and minerals with the notable exception of iron (because it's generally poorly tolerated). However, the dosages may be rather low.

Hi Mary Jo,

It is great that your antibodies are decreasing. However, a still positive result after one year gluten free could indicate either that gluten is still sneaking into your diet, or that you have some other autoimmune issue brewing. I believe these antibodies can also be elevated in type I diabetes and inflammatory bowel diseases. However, they would not be so high as in celiac disease.

You didn't mention how you feel after one year into the diet. Do you have any lingering symptoms? Also, have you had a follow-up endoscopy? How are your villi, compared to this time last year?

Is your home gluten free? If you live with others who consume gluten, you might get cross-contamination from crumbs, shared utensils, worktops...

Another thought: make sure any cosmetics you use are gluten free, especially things you could accidentally ingest, like lipstick.

You could try to go on an even stricter gluten-free diet, to make sure you eliminate all possible sources of cross-contamination. A variant of this is the Fasano diet, after the famous celiac specialist. This diet has been quite successful in cases of refractory celiac.

You can do this by eating only whole foods and avoiding all processed foods, including those certified gluten free, like bread, cookies, ready-made meals, chips etc. and also canned and frozen foods and lunch meats etc. It is also recommended to avoid most gluten-free grains and flours while trying this diet, just to make sure there is no cross-contamination.

Basically, the foods allowed are fresh meat and fish, fresh vegetables and fruit, eggs, unseasoned nuts and seeds in the shell, rice, dried legumes, butter, plain yogurt, milk, aged cheeses (if you tolerate dairy) and things like oils, unflavoured vinegar, honey and salt. You can make your own sauces and dressings, that's no big deal if you already cook. But you would have to prepare all your meals from scratch.

I hope you figure this out soon and get those numbers down.

Hi Matt, have you tried eating only well-cooked fruits and vegetables? Raw stuff can be tough to digest for a while for a damaged gut. Hang in there.

knitty kitty, in February, when I stopped tolerating some of my vitamins and my medication, I took them all out for a week, then reintroduced them one by one. Vitamin C caused no issues, I only reacted to the steroids and the vitamins with fillers. But I can repeat the experiment, no problem, and will report next week. As a side note, I take 250mg of vitamin C daily, hardly an amount to overdose on.

Perhaps I have not been clear. I have no symptoms on a regular basis, when I eat beef and take vit. C, calcium and potassium. In fact, I feel great, all buzzing with energy and good mood. I work, exercise, do yoga, meditate, write poetry, cook, clean up, sleep well, make love and can't wait for this confinement to be over to go hiking in the mountains again

It is only if I try to ingest anything else but the above that I get symptoms: really bad abdominal pain with very small amounts, diarrhea too with bigger amounts. These symptoms occur 12 to 24 hours after ingestion and last for about 24 hours if I don't ingest the culprit again.

@knitty kitty, thanks for the warning. As I was saying I took a B50 complex daily for a few months with absolutely no issues, so I don't expect any with pure thiamine. I will start very low anyway, as I do with any food/supplement.

I gave up the B50 because I started having bad abdominal pain and diarrhea after a few months of taking it daily. When I took it out, the symptoms disappeared. I reintroduced it and the symptoms came back intensified. I took it out again, the symptoms disappeared again. I reintroduced it at a quarter dose, the symptoms came back intensified. I suspect the fillers, not the vitamins per se, because this has happened with other vitamins of different brands, but with the very same fillers: vitamin D, vitamin K, methylfolate.

@NNowak, thank you for your suggestions. Unfortunately, as I have been saying, I do not tolerate anything plant-based, even in tiny amounts. Along the years, I have amassed a whole cabinet of supplements, all high-quality, all hypoallergenic and free-from, all reputedly wonderfully tolerated by the most sensitive of people - yet none of which I have tolerated myself at a much lower than minimal dose. I will not go into how much they cost and how I am throwing them away as their best-before passes. You will understand my reluctance to add to this already spilling-out cabinet.

Naltrexone is approved, but only for alcohol withdrawal and only on prescription.

NNowak, thanks, I've had a look over Dr. Theoharides's research. I know MCAS is tough to diagnose and would be ready to believe I have it, even if a specialist would not diagnose me with it. It is just strange that I have no skin symptoms, no flushing, nothing obviously looking like a histamine reaction, and that my digestive symptoms happen with a long delay of 12 to 24 hours. I have been trying natural antihistamines but do not tolerate them. I can try the medical ones that are available over the counter, maybe I'll get lucky with those. I'm having some trouble finding LDN in France, where it is not approved.

knitty kitty, you may have a point and thank you for making it and supporting it with those articles. I do try to get as much nutrition as I can, although my diet is so limited. I am aware that vitamins get destroyed by cooking and this is why I try not to overcook my meat and will actually head towards eating it on the rare to raw side if I cannot manage to supplement. Until recently, I took a B50 complex daily. I have an order placed for thiamine in powder form with no fillers and should receive it in the next couple of weeks - hopefully I will tolerate that.

At the same time, I believe there must be more to my condition. For example, I was wondering if with a thiamine deficiency I shouldn't have symptoms all the time and not only when I try to eat any other food but beef. Also, it's not just carbs I do not tolerate. The fillers I was talking about are magnesium stearate, silicium dioxide and cellulose. And should I be in so much pain from a mere teaspoon of mashed vegetables - any vegetables, not only the high-carb ones? Why can I not add a bit of parsley or another herb to a meal? Why can't I have a sip of any herbal tea? And again, why can I not eat fish anymore, when six weeks ago it gave me no issues? Why can I not have one bite of chicken, duck, quail, lamb, pork or deer? I won't even bother wondering about eggs, nuts, legumes, dairy or grains...

Anyway, thank you for your support and pushing me to look further. It's good to have a different perspective on this.

@knitty kitty Thanks a lot for the info. There are many symptoms of sulfur intolerance that I don't have. I only get digestive symptoms (pain, diarrhea) when I eat a very small amount of anything else but beef.

I have a running prescription for monthly labs and so far I have been adjusting my supplementation based on those. I have never had any deficiencies so far. The only thing in the low normal range is ferritin, despite me eating about 2lbs of beef a day, including offal.

I've been supplementing with potassium because steroids deplete it. Now that I no longer take steroids I have lowered the dose and will adjust it further based on my labs. My magnesium levels have always been OK, and my vit. D levels always in the optimal range, as I live in a sunny area with very mild winters (roasting undressed in my balcony right now ).

With a diet rich in liver, it is practically impossible to become deficient in vitamin A, copper, zinc, molybdenum a.s.o.

Actually, the only vitamins I worry about in the long run, now that I no longer tolerate fillers, are vitamin K and folate. Beef is not a good source of either. There is folate in liver, but I must limit my liver intake (so as not to get hypervitaminosis A) so I don't know if I'll be getting enough folate.

As for the macrophages, they were very much clearing in January, either as a result of Entocort, or spontaneously. I'm just not getting any better as far as food intolerances and iron malabsorption are concerned. But thank you for those research articles, it's all very interesting and all connected indeed.

Have you tried cod liver oil? It's a pretty good source of vitamin D.

Thanks for the support, NNowak. I have seen a mast-cell specialist who has ruled out systemic mastocytosis and found my clinical and histological picture inconsistent with MCAS. Symptom-wise, among other things, I don't seem to have a problem with histamine. Although bone broth does not go down well (home-made), I can have meat cooked three days ago with no issues.

I will check out the doctor you recommended, thanks for the tip. I have been reading up on MCAS as this is where people get crazy reactions to all sorts of small things, but as far as I can see it is a syndrome, not a disease per se, and it is mostly secondary to something else. I may be wrong, but I am also under the impression that steroids and antihistamines only treat the symptoms, but do not actually cure it.

Thanks for the suggestion, Ennis. I have organ meats every day, heart, liver, tongue, bone marrow, anything I can get my hands on. I only skip kidneys, as I just cannot stand the taste. Otherwise, I literally eat nose to tail. I've been mostly boiling the meat in the pressure cooker as I don't much enjoy the texture, but I will move on to grilling and leaving it rare to raw - if I can stomach it, again literally

Another update to this post for whoever has the patience or curiosity to read it or finds themselves in a similar situation.

As of March, I cannot eat fish anymore. Through February, I tried eating smaller and smaller quantities, but I kept getting worse and worse from ridiculous amounts, so I just gave it up a short while ago. I currently eat only beef. I no longer tolerate vitamins with fillers. I only take vit. C, calcium citrate and potassium citrate in powder form with no fillers. By end February I had also stopped tolerating Entocort, I suppose because of the fillers too (a lot more and nastier than in my vitamins), so I had to stop it - I was on the minimal dose anyway. I have a prescription for hydrocortisone, but have no intention of trying it, considering the current situation.

My doctors and the university hospital they work at are very involved in the research for a vaccine and/or treatment for COVID-19. As such, they have been impossible to get a hold of, nor can I expect the results of the specialised tests they were planning on my duodenal biopsies anytime soon. So the only plan of action I have left is to just keep eating beef and hope that my immune system tolerates it in the long run and that I don't become deficient in anything.

Stay safe, everyone!

Hi Mike, sorry to hear you are struggling. Sometimes celiacs have additional intolerances apart from gluten. In many cases, these intolerances are temporary and resolve once healing has occurred. However, to speed healing and prevent symptoms, it is recommended to eliminate these additional foods and reintroduce them after a while, like six months, to see if they are better tolerated.

Common intolerances can include dairy (even lactose-free), soy, gluten-free grains like corn, quinoa or buckwheat, legumes, sugar, eggs, nightshades... and the examples can go on and on. Everyone is different and can have their own more or less severe intolerances.

To help identify possible intolerances, if you're not doing that already, you could start keeping a food diary, logging everything you eat and your symptoms, to see if any foods can be correlated with how you feel.

Also, you could look into an elimination diet that focuses on whole foods and eliminates processed foods. The Fasano diet for unresponsive celiacs is a good place to start: http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/

Then there is the Specific Carbohydrate Diet, which eliminates all grains and starchy vegetables: http://www.breakingtheviciouscycle.info/

As you may know, it has been used for SIBO in combination with low FODMAPs, notably by Dr. Allison Siebecker: https://www.siboinfo.com/diet.html

SCD is fairly similar to the Paleo diet - there is lots of information about this one, just google it. A quite restrictive, but very effective version of this is the Paleo Autoimmune Protocol: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

I hope this helps.

AuntieE, in Europe we have these protective masks called FPP2, which are typically designed as professional dust masks, but also protect both against transmitting and getting the virus. I got mine in a regular small-town pharmacy. Wearing such a mask and frequently rubbing hands with alcohol, which can be carried around in a small bottle, are quite effective measures against any germs.

As far as I can tell, the recommendations in the US for fragile people are to limit their outings as much as possible and avoid crowded places. Going out on short shopping trips once or twice a week outside the rush hours and with adequate protection should not pose such high risks.

Thanks for your support, AuntieE I'm actually not so worried about getting the virus itself, as I am about getting it with mild symptoms and being hospitalised anyway. In Italy, they leave people with mild symptoms (over 85%) ride it out at home because they clear it on their own anyway. But here in France there are not yet so many cases, so it still seems special enough to put them all in hospital. My food issues may be more difficult to tackle then. But most likely I don't have it

In your case, if you really get in a situation where you can't go out to shop, I was wondering if maybe you could appeal to your neighbours or your local church community to help you out with the groceries?

Also, I think you might actually be able to live on just sweet potatoes and apples for two weeks. I don't know of longer individual quarantines.

My diet is even more restricted than yours. I can only eat well-cooked beef and small amounts of fish - and that's it. I can have nothing canned, not even in salt and water, it has to be cooked from fresh or frozen.

However, I would not worry so much about being quarantined for very long. I live in France and was in Italy recently. Now I am required to stay in isolation for two weeks, but I am allowed to go out and get groceries if I wear a mask.

There are a few options if you would not be able to get out at all. You could ask someone to shop for you and leave the groceries on your doorstep for you to pick them up. Or you could order online and have stuff delivered.

As a general recommendation with a restricted diet, I strongly recommend investing in a freezer, it makes a world of difference.